tag:blogger.com,1999:blog-60791983853276327552024-03-14T02:12:45.612-06:00Blessed By DOur Journey to a new life with Baby DShorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.comBlogger106125tag:blogger.com,1999:blog-6079198385327632755.post-16156407612616059742018-01-16T12:44:00.001-06:002018-01-16T12:44:26.205-06:00The terrible cost of becoming littleIf you all had ESP, you would have known about all of the mental posts I have written you in my head. And not to toot my own horn, but the ones written in my mind that never touch paper seem to be the best. Of course, I'm the only critic, so I suppose that assessment may be biased. <br />
<br />
Really though, it just seems like too much. How many times can I talk about the same thing? I bore myself with my circular thoughts so it seems silly to write them down. But then another mom who I presume has a child with Dominic's condition asked how he was. It's for you Bonni I'm writing this update.<br />
<br />
This may sound terrible and morbid, but I spent much of the first 3 years of Dominic's life waiting for his death. With the prognosis he had, it's really all I could do. I prepared, and waited, and prepared, and got angry. I yelled at God, I cried at him. But nothing. Those years were such a powerful growing period for me, where God gently led me to accept His will, not what I thought His will was, or should be, but what it actually is. I realized that I put my trust in the doctors, the grim prognosis, the worlds whisper that he's not fit to live, the allure of the "easy life" I secretly coveted. Oh, to go camping like my friends! <br />
<br />
But somewhere in these years I finally was able to see that despite my thrashing and planning and torment, I do not decide God's will. He gave me a fiery spirit that needed to be cultivated to bear the fruit he meant for me to bear. Still, that process continues, and I suppose it will until my last breath, but he has softened my heart and helped me to accept his will, however it comes.<br />
<br />
Over a year ago Dominic had his third bowel obstruction that required emergency surgery. This surely was it. The time had come for him to die. But to my surprise the robust and beautifully honest Greek surgeon met me in the waiting room that early Christmas morning, flailing him arms in frustration, to tell me how scarred up his insides were from the repeated surgeries. But, to my happy surprise, he made it through, once again. <br />
<br />
Three weeks later, after another brush with death when his body wouldn't accept food, Mike and I, along with our palliative care team, explored all the terrible possible ways he could die and decide what measures we would accept and which ones we wouldn't. But once again, His will. He lived. At discharge, the same surgeon told me to watch Dominic close, because the obstruction will happen again. I appreciated his honesty.<br />
<br />
This past Christmas Eve marks one year since his last obstruction. The first six months after surgery Dominic was tormented with horrendous pain from the scarring in his abdomen. With the help of an amazing pain doctor, and an obstruction that untwisted on its own, his pain ceased almost six months to date after the surgery. Those six months through were some of the hardest days we've had. He would have happy days, and then without warning would begin screaming this terrible, tormented scream that could only be alleviated by heavy narcotics. He would arch back, tears streaming down his red cheek, his neck in full extension so that the trach would be coming out. He would scream those terrible silent screams until his lip were blue, the ones where you brace yourself for the piercing noise to start again, and would gasp and it would all start again. I balanced between wanting him to be happy and alert and pain free, medicated, and praying for his death so the pain would end.<br />
<br />
From pure grace, I was spared from ever getting angry with God about his pain, but the questions of why a child who can't understand what is happening to him mounted. Again and again, I was reassured in various ways that this is Dominic's way and to accept. I must believe that somehow Dominic has consented, as I know he is being used for the glory of God. It was difficult to maintain relationships with friends, and even hard to talk with my family at times. I felt a constant void and nauseated feeling in my gut. The constant threat of sudden profound pain and screaming seemed to lurk like a demon and rest was elusive.<br />
<br />
Just as suddenly as it began, the pain stopped. We seemed to have gotten our happy, silly boy back. We had a good six months of calmness. We all recovered from the anxious feelings the time of pain seeded in us, and we were able to return to some sort of normalcy. In October, we were granted a Make a Wish trip that changed our hearts. I'll write more about that another time.<br />
<br />
Recently, Dominic was diagnosed with a growth in his middle ear called a Cholesteatoma. Its a growth of skin cells that though it's not a tumor, is aggressive like a tumor. It produces an enzyme that dissolves bone. So far, the growth has encapsulated two of the three hearing bones in the middle ear and it seems to have traveled up into the air pockets in the skull. He will have a surgery to remove the growth and with it will have his hearing destroyed in that ear. Incidentally, the imaging we needed prior to surgery also showed he will continue to loose hearing in both ears until complete deafness.<br />
<br />
During a recent hospitalization, we also discovered that Dominic needs home urine catheterization. We've had to add this to his already long list of daily duties. <br />
<br />
Though Dominic has started at a disadvantaged state as far as his capabilities, it seems he is slowly loosing what he does have. This can be looked at in two ways it seems. First, we can look at it with pity. We can say "what a shame" or perhaps "how could God?" Alternatively, we can attempt to look at it through the eyes of God. Being unable to sin, baptized, and confirmed, Dominic has a pure soul that pleases God very much. As his little abilities begin to diminish, it doesn't affect his pristine soul. We however, have a chance to grow in love and holiness by happily, or willfully at lest, serving the least among us. Because of my proud and rebellious heart, God is showing me great mercy in giving me an opportunity to become little, like Dominic. <br />
<br />
Remember Dominic when the little ones around you demand more than you have. The least tear at your sanity and threaten to destroy you. I feel God inviting me to become little, and through Hope, I know he's inviting you all to the same.<br />
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In all things, beautiful and terrible, God be praised now and forever.<br />
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com7tag:blogger.com,1999:blog-6079198385327632755.post-5608172051353627022017-01-11T23:04:00.001-06:002017-01-11T23:04:11.597-06:00Keeping vigilThe past few weeks have consisted of something we've grown accustomed to, namely sitting and waiting. <br />
<br />
On Christmas eve at 6:30 in the morning Dominic began vomiting and got the look I dread and always keep vigilant eye for- that one that lets me know he has a bowel obstruction. I woke my mom and asked her to come right over so I could have a second hand when bringing him to the ER while Mike stayed home with the other kids. Good thing I did, some fancy acrobatics were required to stand and clean up messes as he continued to struggle during the car ride. <br />
<br />
The next 9 hours consisted of Dominic slipping in and out of consciousness, as is his normal extreme pain response, mixed with cries and screams on his part while the staff ordered tests and gave meds to determine the cause. My mom and I took turns comforting him, holding him and praying. <br />
<br />
Mike and I made the difficult decision for him to go on to his family's Christmas celebration to keep some sense of normalcy for our children that Christmas Eve. Before leaving for his parents house, he and the kids came up to see Dominic. He prayed over him, gave him a blessing and what he thought may be his last kiss. The pain of leaving Dominic's side was painted on his face as he turned to walk out of the door. I smiled at the kids and told them everything would be just fine, Bubba just had a little tummy ache and needed "a little surgery." <br />
<br />
We both felt that deep hole in our soul from being separated and Mike felt numb as he went through the motions to give the children the life they deserve on Christmas Eve. What a selfless gift he gave the other kids that night, one they won't understand for many years. <br />
<br />
We've learned that during times of great stress with Dominic we must keep a calm demeanor for the kids, no matter how dire the situation appears to us. Their life is one full of happiness but also the stresses of watching their parents deal with emergencies with their brother. They needed, we needed, for them to feel that this was just no big deal and Christmas could continue as planned. <br />
<br />
Twelve hours after I first noticed he was ill, we were sitting in pre-op, alone except for one pre-op nurse due to it being the evening of Christmas Eve. At this point his little body had enough. That morning I had placed him on the vent to keep his oxygen levels up due to the stress his body was under. All day I had removed it for various imaging tests and repositioning without problem. But now, after 12 hours of this excruciating pain, when I removed the vent due to a dying battery he didn't breathe. Immediately the monitor started alarming and the color drained from his face to a pale pink, then gray, then blue. He was unconscious and completely still. <br />
<br />
I yelled for the nurse to grab the ambu bag on the bottom of the bed and began to breathe life back into him. I was panicked and struggling due to an awkward position since I was holding him. At that moment the room flooded with staff who were more level headed than myself and took over. I stood by helplessly, shaking and watched as he pinked back up. I remember the nurse at his head telling me over and over "it's ok mom, he's ok, you did good" though his only movement was the rising and falling of his chest as she gave him breathe. <br />
<br />
I gave him one last kiss and blessing as they wisked him back, still using the bag to breathe for him. I believe it was at this point that his body would have had enough if we hadn't forced him to hold on a little longer.<br />
<br />
Then we sat. And waited. And cried. That evening he was in surgery once more to correct a complete obstruction (his third obstruction in his 5 short years). And once again the surgeon told us afterwards just a little longer and it could have been a different story, his bowel had begun to split <br />
open.<br />
<br />
As terribly stressful and frightening as surgery is, the real test begins afterwards. Everyone leaves and you're left there to stare at your very sick, very pale child who is writhing in pain. As much as the doctors try, getting his pain under control always takes a few day. Dominic is just built different and what normally works for other kids just doesn't with him.<br />
<br />
With the help of our family, we've kept vigil with Dominic this whole time, 19 days now. We've had times of success, like when his bowel sounds started, and times of agony like when he had a bad drug reaction that left him jerking and crying for 2 hours during a failed PICC line placement. And again, sadness when his gut went into shock and we lost all ground with the day of feedings we had started after 9 long days without food.<br />
<br />
It was at this point we thought his time had come. His tummy stopped accepting food and went back to sleep. Our hearts were wrenched knowing obstructions are something that ultimately ends the life of kids with Dominic's syndrome. We met with a doctor to discuss options and possible courses of action.<br />
<br />
Another week of not eating, another week of holding his hands so he doesn't open up the incision site from him telling us he's hungry with the flicks he gives to his g-button to communicate that desire. There were many nights we kept vigil with him in agony without a wink of sleep. All we could do is stand there, hold his hand, or rock him, telling him it's all going to be okay. Other nights we got to sleep but were continuously startled by beeping or the sound of his changing breathing pattern. It is then that our night vigil would begin.<br />
<br />
Though I've lost the ability to pray during this admission, I do look up to Heaven occasionally. I have no words to say. I'm not angry, I'm just... broken. During this time I went to mass, purely out of my Sunday obligation, and I remember saying during my attempted prayer time "what do you want me to say to You?" There just was nothing left in me to give. I don't have eloquent prayers, I don't have enraged cries. I'm just dry, like a desert. Parched, lifeless. <br />
<br />
But then someone who has been through the hell of loosing a spouse told me that it's okay to have no words. She said I didn't need to rush out of that place or force conversation. Just be where I am, content with what I have for now. She made me realize the vigil we keep is our prayer. The hours of sitting at the bedside with an aching head and back or the hours of singing when there is no moisture left in your mouth is all an offering to God. It is all a prayer, the only way during these times we can offer any praise to God at all.<br />
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We all have different ways we keep vigil. For some it may be rocking a sick child for hours in the middle of the night. For others, it's waiting up for a spouse to get home from work to make them feel important. And for some of us, it's sitting in hospital rooms, waiting and watching. <br />
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Whatever our vigil is, I find peace and joy in thinking I am sitting with Christ. Didn't he ask His disciples to keep watch during His agony? And they were overcome with sleep. Maybe the vigil we keep can be an atonement to His Sacred Heart. However weak I am, however easily it is for me to slip into despair, there remains an underlying hope in knowing I don't need to say fancy prayers, or anything at all for that matter. All that matters is fulfilling God's will with the inactivity of sitting and keeping vigil.<br />
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<tr><td class="tr-caption" style="text-align: center;">Dominic this summer enjoying his swing</td></tr>
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<br />
Praise be to God Dominic is doing great. He overcame our big scare and his gut has begun accepting food again. We are thrilled that he could come home very soon. I wanted to write this to all of you earlier, but as I said before, I had no words. I would sit with my hands on the keyboard, wanting you to walk with us, but nothing came out. So here it is. Not eloquent (I'll blame that on my extreme tiredness), but here none the less so you all can share in his journey. <br />
<br />
We feel almost certain this will happen again. We never know which time will claim his life, but we are committed due to the passing of two sweet children of God whom we met only briefly<br />
but loved just the same, to cherish each moment we have with him. I promise this to the mothers of these baby-saints. One woman who just buried her child wrote me this days ago: <br />
<br />
"Remember not to live each day in waiting for him to die, momma!! Live each day enjoying and cherishing the LIFE that he has and will continue to have beyond this earth! I know it is almost impossible to enjoy those tough times, days, weeks... but enjoy it because when he is gone you will wish for those times too."<br />
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I will. Promise.Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com7tag:blogger.com,1999:blog-6079198385327632755.post-13677694012972236942016-09-13T14:21:00.000-05:002016-09-13T14:21:01.406-05:00"Should-have-been"It's easy to say during certain times that you're going to be an open book, that you'll share your life with abandonment, but then that time comes when you are too vulnerable to expose yourself. Writing for me feels more humiliating than that dream where you go to school naked. It's not just your flesh that is exposed, it's your soul, with all the dirt, the marks, the darkness. <br />
<br />
During a crisis, it has always been easy for me to write. I want you there with me dear friend. I want to share these times with you- to let you live through Dominic a very special, called life. During times of great joy I want to share the happiness with you, to let you feel that joy bubble up at the moment of triumph. But it's during the ordinary, everyday tornado of happiness and grief that I become paralyzed. In that paralysis I want to protect you. And me too.<br />
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There's a fine line on which I teeter between the real, honest truth about the joy and pain of having a child with special needs and the desire to protect myself and all of you from the brutality of it all. And it is brutal. This life, this calling, pounds on your soul in a way I could have never imagined. You are in an almost constant state of laughter and sorrow, acceptance and forsakenness. So, in the meantime, I've chosen to hide, I've become a coward.<br />
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But then God spoke, as he always does, through someone I would not have been listening for Him. And I heard Him loud and clear. This is Dominic's vocation- do not let your pride and fear get in the way of his work. So with that, here I am. I can't hide who I've become though, and I hope that's okay with you. <br />
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No longer am I the she-hulk who runs into the clinic fighting. No longer am I the loud advocate prideful in proclaiming the truth and forcing all to see his dignity. I've been broken down a bit, in a way. I'm gentler, quieter. I do fight when needed and I still fiercely protect him, but I can listen now. I cry more. I laugh with greater understanding of true joy. I'm more private in my friendships. I'm tired. I well up with tears at the drop of a hat. I celebrate and mourn all at the same time. In all, I've become more human.<br />
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I've always been able to see the "should-have-been" when I've treated children with profound disabilities in my work. I've always felt great sadness when I would catch that look, the angle I would see that child's face and know what he "should-have" looked like, if only. If only he had muscle tone. If only his jaw had been developed by being able to chew. If only the facial muscles were formed as they were intended. I see their little frail bodies and think of what their arms and legs would have looked like if only they could walk, run, jump, and play.<br />
<br />
And now, I too have a "should-have-been." There is a sadness when I see Dominic's little deformed foot with the curved bottom; it should be developed and flat from walking. Or his little hip bones that stick out way too far- they should be deeply seated in the pelvis from running. Or his little hands and bony fingers atrophied from lack of use; they should be supple, covered still with a bit of baby fat. No longer is he the little chubby baby that may develop into what he should. He is now the 5 year old that hasn't.<br />
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And through all this, the weight of my heart when I ponder these truths, the holding back of sorrow so as to not allow it to overtake me like a tidal wave, I now see the truth. He is not a "should-have-been" at all. None of them are. He's made perfectly, in the image of God, just as he was meant to be made. He is a pilgrim, just like the rest of us, on our way to the Promised Land, where his soul will shine with the perfection he was gifted from his conception. I believe it assaults the dignity of each of the "should-have-been" children to look for the way they would have been "if only." It is them who will be the happiest to reach the Kingdom, and it is them with their purity, who are more alive than all of us.<br />
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This is a reality I know and believe with every ounce of my being. I know God is good. I know He is all-knowing and I know He could make Dominic into the boy he "would-have-been" prior to The Fall, and yet He doesn't. He chooses to let Dominic live like this. The allows the deformities to continue to grow with Dominic. I trust Him, hiding myself in His Sacred Heart and say "yes," as long as He desires. <br />
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I've learned that it's okay to hurt, okay to say "no" sometimes, begging for mercy; okay to yell and scream and wish for the life you planned. But we can't live there. We have to allow ourselves to have our feelings but then we've got to stand back up and let the joy overwhelm us that comes along with this great life. Sorrow? Yes. <br />
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But also joy.Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com4tag:blogger.com,1999:blog-6079198385327632755.post-48869577745071153052016-01-23T21:52:00.000-06:002016-01-23T22:07:15.153-06:00He is our teachable moment<div class="separator" style="clear: both; text-align: center;">
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There is an article circulating out there on the blog-o-sphere which in so many words patronizes its readers, and all of humanity for that matter, for being drawn to people whom look different. It asserts the notion that we as individuals are not connected and thus have no responsibility towards one another's formation. The synopsis of the article is "I'm not interested in teaching you why I'm the way I am... so move on." Though I understand the writer's desire for autonomy, I found the general theme of having no responsibility for our neighbor absurd and sad. From people with different lifestyle choices, to people with green hair, to people with disability, the author wanted the reader to know it is not their responsibility to teach others about themselves. Look away and carry on.<br />
<br />
My mind has been swimming with the ideas this article puts forth for several days and I've come to the conclusion that if this writer is correct, that we exist only for ourselves without going out to others, then Dominic's life, and those like him, are worthless. I mean really, what is the point of someone who can not speak or "do" much of anything in this author's view of reality? Clearly, they burden society with their substantial medical costs and inconvenience. And let's face it, it's unpleasant to see a contorted "should-have" of a person. So, what's the point really of their existence if they are looked at through this lens?<br />
<br />
But that author is wrong. Thank God, she is very wrong. Who are we if not one body, placed here on this earth to teach, love, and build up others? What would our life look like if we didn't go outside of ourselves to reach others and share our very beings with them? Is this not exactly what we've been asked to do: "Love your neighbor as yourself?" We love others through the sometimes uncomfortable and difficult task of reaching out and being open to know someone and let them know you. However, our spirit is willing but our flesh is weak.<br />
<br />
Don't we all go around immersed in ourselves, hardly able to pry our eyes off the screen in our hand? Wouldn't we all rather not be bothered with the needs of others? How often do we parents answer a child's demand with a sigh and reluctant half-hearted gesture? It's human nature after all, the state of our poor souls after the fall. And it is because of this tendency towards selfishness that I believe Dominic and those like him are teachers. They are here to make us look up, make us go out of ourselves, out of our comfort zone. Make us serve. Make us love. <br />
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The author of the article ended her rant with "I'm not your teachable moment." That last line left me so sad for her. I wanted to yell through the screen, "But, you are! We all are!" I wanted to tell her about Dominic and how people know him when we go out in public. People I've never even met know Dominic. They come up and touch him, smile at him, love him, and greet him by name. And often even those who have never met Dominic and do not know our story touch him as they walk by. Their light brush of his cheek or rustle of his hair is them going out of their comfort zone, out of themselves for another and learning to love. Sometimes they look, stare really, at him, shocked, then look at me and smile a genuine smile of compassion, as if to say "ah, at first I was sad for him, but now I'm happy for you." He is their teacher. He says nothing, does nothing, but in his inability, he teaches them to love. He is our teachable moment. Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com5tag:blogger.com,1999:blog-6079198385327632755.post-42105423500786422132015-11-17T21:52:00.003-06:002015-11-17T21:52:37.691-06:004 years- an overview<em>We re applying for a scholarship for Dominic to get hippotherapy (physical therapy o</em><em>n a horse). I had to write a synopsis of life with Dominic and thought I would share it with all of you good people. St. Dominic, pray for us!</em><br />
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Our fourth pregnancy was met with great excitement and anticipation by my husband Mike and I, as well as our three young children Anthony, Jacob, and Mary. We longed for another baby and were over the moon that we would be entrusted with another soul! The pregnancy was a normal one and all was well, or so we thought. What we didn't know was that our newest little baby, who had a genetic disorder only described by doctors 18 times ever in the medical literature, was about to change our lives forever. </div>
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It was immediately after birth that we knew something was wrong. The baby was pale white and limp. The midwife quickly started bagging the baby and before we knew it the room was flooded with hospital staff, all trying to resuscitate this little life we had named Dominic. The NICU nurse started calling out abnormal features such as "small, low ears," and "flat bridge of nose." It was at that moment I knew something was wrong. You see, I am a pediatric physical therapist and I know just enough to recognize the signs of a genetic disorder. Dominic was whisked away and I was left in the bed, shaking and scared. </div>
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The next 5 weeks were the most trying of our lives thus far. Dominic had his ups and downs, was intubated and on a ventilator to maintain life. He had a surgery to fix his malrotated intestines and had to get a g-button since he could not eat by mouth. He had several MRI's of his brain which showed a very abnormal, small, simple brain. The doctors told us we would have to bring him home to die.</div>
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To everyone's surprise however, he puled through. He eventually got stronger and was able to breath on his own. After 5 long weeks we brought him home! It was the most joyous week of our family's life! The night before we brought him back to the hospital (6 days after we brought him home), he stopped breathing 8 times. He was connected to a pulse oximeter to monitor his oxygen levels and heart rate and an apnea monitor that would alarm when he went without taking a breath for 20 seconds. This was the worst night so far so the next day he was re-admitted. </div>
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It was determined he was having seizures and terrible episodes called "dying spells" where he would pass out and stop breathing. The decision was made at that point that he needed a trach (an artificial opening in his neck) to open his airway and help him breathe. After the surgery however, the spells continued and he regularly would stop breathing. He was placed on a ventilator which he would remain connected to for over a year. After 3 long months in the hospital, we were finally able to bring our baby home again! This time however, we weren't just bringing a baby with special needs home, we were bringing a mini ICU home. He had several machines that went with him everywhere, including a ventilator which breathed for him, the pulse ox, the anea monitor, the feeding pump, an oxygen tank, and a suction machine. We also had to always be prepared for an emergency where the trach would come out or he would stop breathing. We carried extra trachs and an ambu bag incase he needed to be resuscitated. We now had nurses in our home helping us. Our privacy as a family was destroyed as we learned to live with these strangers in our home. I remember the heart break of seeing a woman I didn't know holding my baby, taking care of my baby, cuddling my baby so I could tend to the other kids and the needs of the home. I felt like a visitor in my own home.</div>
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Through all of these extreme trials, Mike and my faith in God grew indestructible. There was nothing we could do but trust. Even amidst heart break and sorrow, pain and sleepless nights, our Lord taught us to trust Him.</div>
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Eventually, we got used to our new normal. The other kids adjusted to life with Dominic, life with nurses and alarms, and therapists in and out. We figured out how to remain strong, to keep the faith, and not to let the balls drop.</div>
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Sometimes though the balls did drop. I remember one Thanksgiving morning, about 6 am, I was in the kitchen making pies. I heard alarms sounding so I ran to his room to find him limp and gray. I grabbed the ambu bag, applied oxygen, and started breathing for him. I went into emergency mode, which we've learned to live with always lurking in the background. The numbers on the pulse ox showed he was almost gone. His blood oxygen was at 14%. Either we react, or he dies. We did what we do and brought him back to us. Afterwards I went back to finish my pies, shaking horribly and remember thinking life isn't supposed to be like this. How do I go on making pies when I just saved my baby's life? But I did. Life doesn't stop. Mike and I hugged and continued on.</div>
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These events have been speckled throughout our life with Dominic. Tragic events. Frantic trips to the emergency room. Emergency surgeries (12 in all). Long hospital stays with the other children hanging in limbo, going from place to place, trying to make our "normal" as normal as it can be. </div>
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Through all the stress, the trials, and the tears I can say we wouldn't change Dominic or our life. I don't pray for him to be cured because I know he has a greater purpose than we understand. A wise, old priest told me once that God doesn't make mistakes and I believe that to be true. I pray instead for his life to be one that completely glorifies God. That through him we can all become better people who love and serve, and wear ourselves out for others. That through him people can come to know God and to let go of hurts and pains. His life is not without purpose. I would say in fact that his sufferings, his pains from surgeries and recoveries, are more fruitful than all the good works you and I could perform. By his inability to hate, he teaches people how to love.</div>
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Dominic is now 4 years old and has overcome so much. Still, he can not talk, can not walk, can not sit longer than a couple minutes. He can not eat and uses a ventilator to breathe 1/2 of the day. Oh, but he can smile. He can love. He can fuss and yell when his physical therapist puts him in standing. He can yell louder when she makes him walk. He can let his speech therapist know when he is feeling like a toddler and doesn't agree with any of the fun activities she brings. He can tell us when he is happy. He laughs when we read him books. </div>
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From the doctor who told us to bring him home to die, to now being able to make a choice between two pictures and hold his own head up, he has overcome monumental odds. He has so much potential locked in his little broken body, we only need to let it out. If we are granted this scholarship, we plan to use the money to pay for hippotherapy lessons. It is my hope and the opinion of his physical therapist that therapy on a horse will strengthen him and may eventually lead him being able to walk with the assistance of a mobility device. Also, this therapy will help his mind to awaken and make him better able to communicate with and participate in his environment.</div>
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I thank you for your consideration and faith in this little boy who gives big hope.</div>
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Dominic's mom,</div>
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Chasity</div>
Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com1tag:blogger.com,1999:blog-6079198385327632755.post-62684237720328980852015-11-01T22:34:00.001-06:002015-11-01T22:34:40.123-06:00Dominic's little cross- a guest post by Dominic's Daddy<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXfOiukgWbfK2znEwiUw_FQlWmJC_chyb3rggSGZt51nXQe77FNvtEyECc0PiXL_22jDq65FUr3E1-8WTe00h72ZQfiLZR6M4jav9vVTj6ABCVLvavzSEgAHdrqJuT_S7n8YKix0k2KYY/s1600/crucifixtion.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXfOiukgWbfK2znEwiUw_FQlWmJC_chyb3rggSGZt51nXQe77FNvtEyECc0PiXL_22jDq65FUr3E1-8WTe00h72ZQfiLZR6M4jav9vVTj6ABCVLvavzSEgAHdrqJuT_S7n8YKix0k2KYY/s1600/crucifixtion.png" /></a></div>
What follows is an e-mail my husband Mike wrote to our family and friends in the wake of this latest emergency with Dominic. It was so beautiful and poignant I wanted to share it with all of you as well. <br />
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Last Wednesday night Dominic turned pale while, rolled his eyes back into his head and passed out. Scary as this may sound, it is not an entirely atypical response from him, but usually indicates sickness or severe pain. Right away, he began taking fewer breaths and was fading fast so I rushed him to his room, hooked him to the vent and gave oxygen and a breathing treatment. I know this sounds dramatic- like call 911 dramatic- but this is life with a child like Dominic, you learn how to deal. He was stabilized and asleep so we didn't bring him in because the vent was keeping him safe and he was otherwise asymptomatic. The next morning however he looked even worse, had a high heart rate (also indicative of pain or sickness), but this time he had bile coming out of his g-button- the sure sign of a bowel obstruction. Immediately I called my mom and had a mini break down- nothing like her voice to crush my hard exterior, exposing the raw nerves lurking beneath. <br />
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I paused a moment and looked into his face, so innocent and fragile. I was taken back by the reality that his life was literally in my hands. A terrible and great responsibility not suited for a mother. I gave myself just a moment too long to linger and I started to loose my focus and composure. Luckily his nurse saw and scooped me up into an encouraging hug. I shook from the sight- I will never get used to seeing him so sick and limp. I swallowed the lump in my throat and carried on. We decided to transport him to the hospital ourselves instead of calling an ambulance because hey, I've transported worse, and I thought an ambulance would be too scary for the kids in a situation that I knew we could handle for a little while longer. They by the way were eating cereal, every now and then greeted by their mom wearing a plastered smile so they wouldn't worry too much. My mom arrived for the kids just as we finished gathering his supplied to go and we were off to the ER.<br />
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As usual, we were taken right back to a room and after hours of testing, the physician confirmed what I already knew- he did have another bowel obstruction where his intestines twisted on themselves. Once the diagnosis was made, things went fast. His surgeon was briefing with the ER doctor while he was driving in and all the wheels were turning. This is an emergent situation as it can lead to death fairly quickly if not treated. Our capable surgeon rushed in and he was in the OR shortly after. What follows comes from my amazing husband. Who knew when God brought us together that sweet, cute boy I fell in love with would turn out to be my spiritual beacon?<br />
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From Mike:<br />
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<span style="color: black; font-family: Calibri; font-size: small;">As some of you may have heard, my son Dominic had to be admitted to Cooke Children’s Hospital for emergency surgery for an obstructed bowel.<span> </span>This is the second of such surgeries and the third on his intestines.<span> </span>Due to scarring from previous operations, his intestine twisted on itself causing a blockage which can be fatal if not caught in a timely manner.<span> </span>The surgery was a success again due to the careful attention and skill of Cooke’s surgeons.<span> </span>So, I found myself sitting by Dominic’s bedside yet again as he suffered and clenched with pain from the large incision on his abdomen.<span> </span>Being in this position is one of the hardest things to do as you must stand by and just try and comfort the one you love while they suffer.<span> </span>Each time this has happened with Dominic I have grown closer to Our Lady who stood by her son while He suffered and I come to better know Him, who suffered a horrifying death for you and me….by name.</span></div>
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<span style="color: black; font-family: Calibri; font-size: small;">This time, however, has been different as myself and our three oldest kids contracted a stomach virus to suffer along with Dominic.<span> </span>In God’s mercy, Chasity was sick with the bug earlier in the week and is able to take care of our youngest, Kolbe, and sit with Dominic as he recovers.<span> </span>When I began feeling ill and my energy began to drain from my body, I realized that it was a unique opportunity to offer this little suffering to Christ and unite our discomfort and pain through Him for someone in particular.<span> </span>This is what our age old church calls redemptive suffering and in particular was described by St. Paul when he wrote “Now I rejoice in my sufferings for your sake, and in my flesh I do my share on behalf of His body, which is the church, in filling up what is lacking in Christ's afflictions” (Col <span class="aBn" data-term="goog_1775058037" tabindex="0"><span class="aQJ"><span style="color: #222222;">1:24</span></span></span>).<span> </span>What is lacking in the suffering of Christ??<span> </span>Does this mean that Jesus’ death was close, but not quite enough, to make us right with God?<span> </span>No.<span> </span>Jesus’ death and resurrection was enough, but Scripture reveals that there is still a crucial role for you and me to play in the amazing work that is Christ’s redemption of the world. </span></div>
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<span style="font-family: Calibri;"><span style="font-size: small;"><span style="color: black;">For many, suffering is evil and must be avoided at all costs. <span> </span>Faith reveals to us something different, it reveals that the most active time of Christ’s life was when He was hanging on the cross, suffering for you and for me, offering His life for the whole world.<span> </span>Jesus’ suffering wasn’t something that happened to Him. <span> </span>Rather, it was something that He willed for the redemption of the world.<span> </span>This changes everything!<span> </span>For those that know Him, he shows us how to suffer and participate with Him in His redemptive work.<span> </span><span> </span></span></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: small;"><span style="color: black;">This is not to say that suffering is good…it’s not.<span> </span>God never intended this in his plan for us, but due to the rebellious heart of his creatures, it is here.<span> </span>The painful reality is that suffering is something each and every one of us must deal with.<span> </span>Often.<span> </span>But whenever it comes, however it comes, we have a choice:<span> </span>I can either waste it or I can use it.<span> </span>I have taught this great truth to my kids, and even though they feel horrible, when they say out loud for whom they are suffering, I can see a physical difference in the way they carry themselves.<span> </span>I wanted to share this with you all since Dominic’s emergency has made me slow down and contemplate the meaning of suffering.<span> </span>I am convinced that his mission is to lead us and others to Christ, and he is succeeding in his mission once again.<span> </span>We have had an out pouring of prayers and support, which has been overwhelming.<span> </span>Please keep Dominic in your prayers for a speedy recovery.<span> </span></span></span></span></div>
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<b><span style="color: black; font-family: Calibri; font-size: small;">Our Lady of Sorrows, pray for us!</span></b></div>
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<b><span style="color: black; font-family: Calibri; font-size: small;">Sacred Heart of Jesus, Have Mercy on Us!</span></b></div>
Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com2tag:blogger.com,1999:blog-6079198385327632755.post-52498431973931131542015-06-04T22:10:00.003-05:002015-06-04T22:10:45.184-05:00It's been a while...In case you've missed that past 5 months- and no doubt you have, no fault of your own- here's a brief re-cap:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf4s2Y7jXzKM2EXSkKtOY9q75TWCVGwP000g2VyFy2Cqy2ETa0faXmVafXj31dKRfo32jPXbS82he1gp15PUyWo2SXZpIe5Q3VBTymCRmJtDPAWwFXf_FaBHGAmTFJsGSudKDDLG_21XU/s1600/DSC_0019.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf4s2Y7jXzKM2EXSkKtOY9q75TWCVGwP000g2VyFy2Cqy2ETa0faXmVafXj31dKRfo32jPXbS82he1gp15PUyWo2SXZpIe5Q3VBTymCRmJtDPAWwFXf_FaBHGAmTFJsGSudKDDLG_21XU/s320/DSC_0019.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The "Easter Bunny," (aka PawPaw) gave us a bunny... without prior parental permission... because we "always say no." So, there's that...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinqP-OMiL4gw1VKxQKsOhoY3FkxuWJe4xK6XPiq0It8XXep2IpCpZIc-ZSlhsI1gqU9LgCUqJATwtaK1V1cSeQDwTeQIPn51uR6xMwyw2MzknJh2fbYpk5mKD7o9YclobWXKyKLhhnCb4/s1600/DSC_0042.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinqP-OMiL4gw1VKxQKsOhoY3FkxuWJe4xK6XPiq0It8XXep2IpCpZIc-ZSlhsI1gqU9LgCUqJATwtaK1V1cSeQDwTeQIPn51uR6xMwyw2MzknJh2fbYpk5mKD7o9YclobWXKyKLhhnCb4/s320/DSC_0042.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dominic loves his baby bubba Kolbe</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6hMe__AEXGbJCRLdOmqIwKWdceNrEy15dTcVPk3K8wFkv0SoFMOKj4Cu4cQETh5-zBS7dUaKXi0BqG4at734pppTfLM7P3jKMN9AqBkvIqnornEcKBCZQXtPasmAFGrdCvpdOgK93bnU/s1600/DSC_0053.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6hMe__AEXGbJCRLdOmqIwKWdceNrEy15dTcVPk3K8wFkv0SoFMOKj4Cu4cQETh5-zBS7dUaKXi0BqG4at734pppTfLM7P3jKMN9AqBkvIqnornEcKBCZQXtPasmAFGrdCvpdOgK93bnU/s320/DSC_0053.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">But Kolbe sometimes tortures Dominic... and does mean brother things like pull his trach out... cause we like to live life on the edge. Sigh.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM6z3KRpj7jaxyCYgHw1uAniEOl_7jc8kMYQ9JhCCCt1M2cjlpf45GpKiSj3eD-ciJvoIKXJtE7s96pv2H6C6iO_n-OgypN3ySxBsxIKrm6APPPrBy9S06RpY48vbqNU-lfk_VqSaZNr4/s1600/DSC_0387.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM6z3KRpj7jaxyCYgHw1uAniEOl_7jc8kMYQ9JhCCCt1M2cjlpf45GpKiSj3eD-ciJvoIKXJtE7s96pv2H6C6iO_n-OgypN3ySxBsxIKrm6APPPrBy9S06RpY48vbqNU-lfk_VqSaZNr4/s320/DSC_0387.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kolbe wore his first pair of shooting ear muffs (I sound like such a girl right now- I don't know what the stupid things are called) to watch daddy do a SWAT competition.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwiPhBkVMPorOVBoeSJn3iudwJ2mcwqeeoCWJEqcNMNK4K8taZHk3_LTQo5slPCRpMhtelMs8xA5W9jgs2va-4Pho8bt8d8U4fuSU6GLJRY63NwpX4KBdUGJ0TLaUrNmcZMnji_FIKp6Q/s1600/DSC_0389.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwiPhBkVMPorOVBoeSJn3iudwJ2mcwqeeoCWJEqcNMNK4K8taZHk3_LTQo5slPCRpMhtelMs8xA5W9jgs2va-4Pho8bt8d8U4fuSU6GLJRY63NwpX4KBdUGJ0TLaUrNmcZMnji_FIKp6Q/s320/DSC_0389.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">...And Daddy is kind of a stud...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvG-M3eaNq3oU3Sc2UeOfkl1az7bXc2fQyW4LTOL1p5R5b9I0rOEvBL8Qdo2fmzutR0lfoMoIF0euNXtw0qIECI6YlhgCgxHkK1e2KGDNhUQgRy7sLStmsqQ5K9uHURvUD3GR7KSys_eg/s1600/DSC_0585.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvG-M3eaNq3oU3Sc2UeOfkl1az7bXc2fQyW4LTOL1p5R5b9I0rOEvBL8Qdo2fmzutR0lfoMoIF0euNXtw0qIECI6YlhgCgxHkK1e2KGDNhUQgRy7sLStmsqQ5K9uHURvUD3GR7KSys_eg/s320/DSC_0585.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">...Cause he shoots stuff and climbs high things...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcImvvTbhpyDeQpltnrY8K3kN53ls48w5i2nT375-_-9zw_JVjJlTv6hl40rYqJErC0zSzp6K7QJy_3rSij7mq3rD3LodsvhCq-l0L0s4-6jLsAIMw_T3tLQ8NTT7pNKgKDVDXrroSn2s/s1600/DSC_0586.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcImvvTbhpyDeQpltnrY8K3kN53ls48w5i2nT375-_-9zw_JVjJlTv6hl40rYqJErC0zSzp6K7QJy_3rSij7mq3rD3LodsvhCq-l0L0s4-6jLsAIMw_T3tLQ8NTT7pNKgKDVDXrroSn2s/s320/DSC_0586.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">...and then flips over them like it's nobody's business.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaHQJCv34J55veiRlBarbZYFz5yTtFnPuRZOSPBL3y9jk-iTcV1jE9ID415ShOypgLMclqTmlQtOgipzKaCbAXblQl1xwFVL_B4DNto9WxyFjRmkEWyRQ10ZIi3FaAmcXZbCmLL1bvIhs/s1600/DSC_0682.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaHQJCv34J55veiRlBarbZYFz5yTtFnPuRZOSPBL3y9jk-iTcV1jE9ID415ShOypgLMclqTmlQtOgipzKaCbAXblQl1xwFVL_B4DNto9WxyFjRmkEWyRQ10ZIi3FaAmcXZbCmLL1bvIhs/s320/DSC_0682.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dominic had a power wheelchair trial where he got to try out using a power chair for the first time!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgau-eqFnMNC9hUXm5bXIIVmIYc9C0uBeeNn0DHkKKzAqj9YeFYbT3kT4C2UhDVQN7WTXzVN-CqYeuP-PO6_PSHm32I5O4Bnp5E9ZDhHB2NaLaWeBivC6BylLwGNXCaskDQrZcck2Kq6tI/s1600/DSC_0688.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgau-eqFnMNC9hUXm5bXIIVmIYc9C0uBeeNn0DHkKKzAqj9YeFYbT3kT4C2UhDVQN7WTXzVN-CqYeuP-PO6_PSHm32I5O4Bnp5E9ZDhHB2NaLaWeBivC6BylLwGNXCaskDQrZcck2Kq6tI/s320/DSC_0688.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I had to help him find the joystick, but once I did...</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5eLZBM30-kR3klJi-BOIJia-HtqgK9QiSe7_Py9gfoks72RF3gIkya9k9-EIfqwUyyJkurihbXyRihrtp0HyyD2Vwe1jWDXvxVaTeoQA8vua0f_AEDJddWspPPxvnzLub2_jgIJ94wA/s1600/DSC_0690.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5eLZBM30-kR3klJi-BOIJia-HtqgK9QiSe7_Py9gfoks72RF3gIkya9k9-EIfqwUyyJkurihbXyRihrtp0HyyD2Vwe1jWDXvxVaTeoQA8vua0f_AEDJddWspPPxvnzLub2_jgIJ94wA/s320/DSC_0690.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was a holy terror. You can't see his face right now, but you can see his huge cheeks in an all-out smile, getting to control where he goes. He turned himself in circles and was able to drive straight several times. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjErjIx96ygObowu4Ts9oFBv4XsGtTYsp2cEshemJefp7irELzF1IuNc2eK8QSrcShLl0QoelJ_gv89iFvQkq64DQAzO9cDslqP3Vv-fBP2pskPCYByg71af6woQ-gJfZwwRcWhH55BCG8/s1600/DSC_0709.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjErjIx96ygObowu4Ts9oFBv4XsGtTYsp2cEshemJefp7irELzF1IuNc2eK8QSrcShLl0QoelJ_gv89iFvQkq64DQAzO9cDslqP3Vv-fBP2pskPCYByg71af6woQ-gJfZwwRcWhH55BCG8/s320/DSC_0709.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So, next time you come to our house, we may or may not have drywall... it's over-rated any how.</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTBpnnH-oyjZRja0qm9Om4W21CKRHCqqpNEwrPWTgchg_a4E1Qhyphenhyphen4OpgmOaKdeXCGO8MLg7EOslXNPMi48X245KQh01u0w9eQ9IBpaP5Y1vkuXaV2qsIH_9TN1WuZzl2EOAFJMC-qZS-8/s1600/DSC_0719.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTBpnnH-oyjZRja0qm9Om4W21CKRHCqqpNEwrPWTgchg_a4E1Qhyphenhyphen4OpgmOaKdeXCGO8MLg7EOslXNPMi48X245KQh01u0w9eQ9IBpaP5Y1vkuXaV2qsIH_9TN1WuZzl2EOAFJMC-qZS-8/s320/DSC_0719.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dominic is getting Kolbe back for pulling his trach out. "Take that Bubba!"</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdd1az9Ws70u_ix9bAxJRIBHrR-sFwpOEZKm2SkAgRlva_j0zP43WhNsFMzg_cAfghRR7rjZEetJbt8uWTOA1xWgSH7ZJbZNt-gjSUtpT5FkwjGd2UoFpeYMbI4xwRpUNDGDa9LgfNGY/s1600/DSC_0728.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdd1az9Ws70u_ix9bAxJRIBHrR-sFwpOEZKm2SkAgRlva_j0zP43WhNsFMzg_cAfghRR7rjZEetJbt8uWTOA1xWgSH7ZJbZNt-gjSUtpT5FkwjGd2UoFpeYMbI4xwRpUNDGDa9LgfNGY/s320/DSC_0728.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dominic has been working so hard in therapy. Here he's working on standing with the best PT in the whole world and his sweet Nurse Krystyn. Clearly, he's revolting- look at him screaming at them!</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzJxYajH1c8x4SjLNiegRU62g3C6CuI1A7vvGUK93ddIkChvU9Vw4SN0FtZ-5m-InQqKYGrbzgByevTfnAufUtfsqDM0QBFRhy0tXh4Vxu76oEfDMGrCrvX6XA9mhadAHJvysKtRGj4Ms/s1600/DSC_0731.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzJxYajH1c8x4SjLNiegRU62g3C6CuI1A7vvGUK93ddIkChvU9Vw4SN0FtZ-5m-InQqKYGrbzgByevTfnAufUtfsqDM0QBFRhy0tXh4Vxu76oEfDMGrCrvX6XA9mhadAHJvysKtRGj4Ms/s320/DSC_0731.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And Kolbe is getting huge- how does that happen! This is him trying food for the first time. he hated it.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHS5HXYYZv2zI1XRlektsetAcZKIm0p7AFL48riurLpo6vShJeBJ2EPRjQkmWSIpAmC7BklB4Jx3Jd8wiqRb31X94ccqqIKgPnSseMNa3-AFyQodGTvmfngLOBit9nErfBBnTiv0LznJ0/s1600/DSC_0738.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHS5HXYYZv2zI1XRlektsetAcZKIm0p7AFL48riurLpo6vShJeBJ2EPRjQkmWSIpAmC7BklB4Jx3Jd8wiqRb31X94ccqqIKgPnSseMNa3-AFyQodGTvmfngLOBit9nErfBBnTiv0LznJ0/s320/DSC_0738.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dominic is kneeling in therapy and jamming to old country- his favorite singer is Johnny Cash, thank you very much.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixs7Nqfp5Zo5WPvvi7WmvAUGiTVoqWuCiUwFCyc_dGzITp8uP3qzHG5nD_ISAdfmwsN1rbu3WGTZOxsJQITmF98i_RaZpcQhBplbCpcr6nxmhPLGu32T6JFSSl2Bdt-JUaP8WIky4uRYo/s1600/DSC_0739.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixs7Nqfp5Zo5WPvvi7WmvAUGiTVoqWuCiUwFCyc_dGzITp8uP3qzHG5nD_ISAdfmwsN1rbu3WGTZOxsJQITmF98i_RaZpcQhBplbCpcr6nxmhPLGu32T6JFSSl2Bdt-JUaP8WIky4uRYo/s320/DSC_0739.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's got such a sweetness about him and he works so hard in therapy and school, he smiles even with the really hard things, except for standing. He screams with standing.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHdn1uFNJRkntG7NxlNXy2dLCSlBFw0-Gr-6NDrzQ8hB2q4P9fhwBNOcJ0UZ0ECh2qjZjpY_NDKGouWrwZQ6rYaB3-uKr3aJfHs8CSj6cTsYvqS38ib0dj6m4CjSgdZBgXtLdnxlBruGc/s1600/DSC_0741.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHdn1uFNJRkntG7NxlNXy2dLCSlBFw0-Gr-6NDrzQ8hB2q4P9fhwBNOcJ0UZ0ECh2qjZjpY_NDKGouWrwZQ6rYaB3-uKr3aJfHs8CSj6cTsYvqS38ib0dj6m4CjSgdZBgXtLdnxlBruGc/s320/DSC_0741.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finally he gets to sit down- look at the relief and happiness on this boys face!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-9WboMXDymx2z7Uhi6YODG3UmDkes-S_vanx55QDV5xTYwxw0CkNb51dKdCIgrFGjdk5RsiIUucSX6s31uRFhiWCp5bCVJLUy8fDAt4ZvkX7ocsnZj2t58H9rj9LRX0XplgDMRWsg87I/s1600/DSC_0751.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-9WboMXDymx2z7Uhi6YODG3UmDkes-S_vanx55QDV5xTYwxw0CkNb51dKdCIgrFGjdk5RsiIUucSX6s31uRFhiWCp5bCVJLUy8fDAt4ZvkX7ocsnZj2t58H9rj9LRX0XplgDMRWsg87I/s320/DSC_0751.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And this happened- cuteness</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyl8E1Qmcg0FVmvF3_iWzRm_JAtV81OCO2nvO7H-2HmqqJ9fVVqbGSuKuvT7rJs1SbWw_Q8mQN7n6ApxFqf50gKdYuVhfP7kOu3WElEjFPYm9B22zBh5ZgqVfdBXkGWTrE7UpYJInyJ-M/s1600/DSC_0753.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyl8E1Qmcg0FVmvF3_iWzRm_JAtV81OCO2nvO7H-2HmqqJ9fVVqbGSuKuvT7rJs1SbWw_Q8mQN7n6ApxFqf50gKdYuVhfP7kOu3WElEjFPYm9B22zBh5ZgqVfdBXkGWTrE7UpYJInyJ-M/s320/DSC_0753.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Best friends. Dominic will reach for Kolbe and if Kolbe gets a hold of Dominic, he will 1.) try to eat him or 2.) pull his hair or trach</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHixW4PycFRk9_4CzHzdCqQsz43OXjbaUCJwbzVEmUIRPlYekmbC9Zoadykwr2j6TimA-Mqp2kzgr2gx-NYhb70N_tHqvQXIadHur7BedY81IsMwYbo-Qfn-UupGDZUqU11islliXzM4s/s1600/DSC_0754.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHixW4PycFRk9_4CzHzdCqQsz43OXjbaUCJwbzVEmUIRPlYekmbC9Zoadykwr2j6TimA-Mqp2kzgr2gx-NYhb70N_tHqvQXIadHur7BedY81IsMwYbo-Qfn-UupGDZUqU11islliXzM4s/s320/DSC_0754.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">But sweet Dominic always forgives him :)</td></tr>
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So, there's the briefest five month re-cap ever. I've missed all of you and I know you have missed sweet Dom, so I'll be back real soon. :)Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com5tag:blogger.com,1999:blog-6079198385327632755.post-44384934511616845162015-01-24T13:56:00.001-06:002015-01-24T13:56:25.494-06:00He's here!Our family is overjoyed to announce the newest Short baby, Kolbe Francis, born December 22nd, 2014. We were prepared to receive this child with grateful hearts despite any health complications he may have had, but in God's infinite mercy Kolbe was born completely healthy! When he was placed on my chest pink, breathing, and eyes wide open, Mike and I had the greatest relief of our lives. We have been blessed and taught so much with our Dominic, but man is it nice to have a healthy baby. What a joy it is to nurse, to have him home with the family, and even to hear him cry. More on all that later... for now, here he is!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJfGmm-ofPrf00m8SivKN5VQP5LwthysRw84r292oXv2gn6hQueGHNDYy2dWtD_KawHmpENqBYoJ_cavJHZrnaT1N0hKpltn4RV54-l32-TSwqPxj7Ervn2O_6pb5NsYoK8-FRbZpsAhg/s1600/DSC_0561.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJfGmm-ofPrf00m8SivKN5VQP5LwthysRw84r292oXv2gn6hQueGHNDYy2dWtD_KawHmpENqBYoJ_cavJHZrnaT1N0hKpltn4RV54-l32-TSwqPxj7Ervn2O_6pb5NsYoK8-FRbZpsAhg/s1600/DSC_0561.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pink and alert right away</td></tr>
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We thank the Lord for His goodness and pray that this little soul grows to be a great lover of our Lord, His Church, and His Mother, just like his name-sakes.</div>
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St. Maximilian Kolbe and St. Francis, pray for us!</div>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com2tag:blogger.com,1999:blog-6079198385327632755.post-12787166778765337792014-12-22T04:36:00.005-06:002014-12-22T04:36:43.641-06:00"As long as it's healthy"I've pondered these 5 words during my whole pregnancy- a rote response given by a pregnant woman to the question: "do you want a boy or a girl?" The mother always smiles and says she doesn't care, "as long as it's healthy." This is an innocent enough and admittedly convenient response, but each time I hear it said I feel a stab which leads me to silently follow up with the question "well, what if it's not?" It doesn't mean much to the mom who says it, perhaps she hasn't pondered in her heart the reality of the child she carries not being healthy, perhaps it's just a response to politely end the conversation. The fact remains we were given the ability to speak to convey truth and our words are not meaningless, they in fact hold the weight of the world.<br />
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We all want healthy children who grow and thrive and eventually leave our home to do great things. But sometimes Divine Providence steps in and gives us not what we, or the world for that matter want, but what we need- a child that is not so healthy. Then we are forced to choose- allow our hearts to be expanded through the trials and tortures, joys and beauty of having a child who is disabled, or close in upon ourselves in anger and retaliation towards God. If we embrace this most generous gift from God we will know love in a way we never imagined.<br />
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I am writing this post at 4 in the morning after waking from my nightmare: I can't bring Dominic back. In my dream I am on the floor with a limp child, doing everything I was taught to get him breathing again, all to no avail. At the end I am holding him, screaming to God that it's not time yet. By the time I wake up in tearful panic I am pleading with God that He give me the grace to accept His will gracefully when He deems it time to bring Dominic home. THIS is what you embrace when you say yes to a child- healthy or not- the lack of knowing what might happen, but having hope. Not the shallow hope the world holds out that everything is going to be okay- because eventually everything will not be okay and if we cling to this pseudo-hope our life will be shattered when the unthinkable happens. But to true Hope- hope in the Christ, in the resurrection, in the infinite and unshakable goodness of our God, in the truth that this world is not our final destination, in the reality that our Father loves us more than we can ever fathom.<br />
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Today is the day I deliver our sweet fifth child- Kolbe Francis. I so very much want a healthy child. I want him to be born and be pink and to cry and to nurse. I want him to keep me awake at night not with the beeping of machines but with the healthy cry for food. I want him to learn to sit and crawl and walk and pull ornaments off of the Christmas tree next year. But I realize that it is not what I want that glorifies God, but what I say yes to. My Father knows what I want and in his goodness He often grants me my hearts desire. But I must be willing to also accept the gifts he gives that I do not want, but need. All indicators point to the fact that this child will be healthy like his three oldest siblings. Still, I struggle to say not "as long as he's healthy," but rather "God's will be done."<br />
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Please pray for a safe delivery for Kolbe and myself. May God be glorified in all things!Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com1tag:blogger.com,1999:blog-6079198385327632755.post-27939537043280768812014-11-20T00:44:00.004-06:002014-11-20T00:44:59.885-06:00It's okay, stare...Have you ever been in public and had grown people stop in their tracks, suddenly loosing control of their ability to keep their jaw closed, and stare at you? Have you heard the hushed whispers of adult women echoing behind you "what a shame" as you walk by? What about the nervous shifting eyes as you wheel your disabled child past? Have you seen mothers pull their children out of your path with more force than necessary when you walk past to avoid any awkward conversation? What about the frantic scolding of a child by his embarrassed mother after the little one says loudly "what's wrong with him?" Have you looked up to see the face of the offending child, being dragged away, looking back at you with beautiful, curious, sad eyes?<br />
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If so, you have felt the tinge of pain that floods your heart, the sharp anger that flashes in your soul, the silent rebukes known only in your mind made to the offenders. You have grown accustomed to the sad state of desolation people's hearts drown in, the lonely existence of generations of people turned inward, unable or unwilling to go outside of themselves and stare reality in the face. When you have done this long enough, you have experienced the transformation whereas your stony, angry heart has grown softer, more understanding of the suffering humanity who have not have the privileged to learn to love from the most lovable of us. You empathize with the embarrassed mothers who you now know are doing their best to protect you from the seeming ridicule of their children, who unknowingly ridicule you themselves by correcting their children with such force. You are able to pity the poor souls who don't see the pure beauty and goodness of the face of God in your disabled child. The anger leaves, the hostility melts, and what is left is a desire to make your child known to all- to spread his light to these impoverished souls who so need to know what real love is. To give your child as he was meant to be given- as a sign even this stony generation can see- of the mercy and love of God.<br />
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In light of all of the times we have been stared at, whispered about, and pitied, allow me to share with you a truth I have learned. It's only been 3 1/2 years with Dominic but I learned not in the school of books and theory, but rather in the school of perspective. That agonizing school of day to day reality that painfully takes your cold heart, that same heart you were sure knew how to love those uncomfortable to love, but actually pitied, and makes it real. Let me give you a secret so many of us parents with saint-babies want you to know but don't have the words to share. The key to loving them, and us, as you ought:<br />
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When your child stops and is overcome with doe-eyes, don't rebuke him. It's okay to stare. The rule to teach your children is "look, but also speak." It is natural for a child to be curious, don't hinder that. If you do, you are building a stone wall around their hearts. Let them look. But always help them come up and talk. Don't talk about Dominic as if he were not there, talk TO Dominic. I will introduce Dominic to your child and you can help your child shake his hand. Touching an "untouchable" will forever impact them- will make them unafraid of the next encounter and hopefully eventually they will not need your help to love those so different from themselves.<br />
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There is nothing in our lives to be pitied. In fact, I would argue that our lives are fuller than yours by the simple fact we are literally living with a saint. Sweet humans with such profound disability do not posses the ability to sin, making them closer to God than we. After all, it is not God who leaves us, but we who leave him. So please, don't say under your breath "what a shame," instead say "what a blessing!" Go ahead, come up and say hi, tell us what a beautiful child we have. This will help to soften the fortress guarding the heart that prevents you from being comfortable with the severely handicapped, and that makes us suspect everyone we meet. Coming up to those of us with children will prime you in effect to being confident to smile at those of us with "unsightly" adult children with the same disabilities.<br />
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If you are in the medical field, please don't pretend to understand. Practice humility, realizing you do not know what it's like and your book knowledge will not make up for that reality. Presumption is one of the greatest offenses we receive by those "educated" in the medical arts. Your education is in facts, books, theories, processes and procedures. You have much to learn. Know that and embrace it. If you have been called to this profession, realize your little years in school have taught you nothing compared with what you can learn by silencing your mind and listening with your heart to a child such as this for 10 minutes. A good practitioner is someone who can diagnose and treat. A great practitioner is someone who will learn.<br />
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I used to pray for Dominic to be healed, to be cured. I prayed for him to survive and be just like everyone else. But now I see such prayers are futile and shallow. It is not he that needs to be healed, it is us, me. It is not he who turns his back towards God, it is I. God shows his mercy to Dominic by preserving him from the ability to sin, but in an even greater respect, He showers his mercy on us by allowing such great a teacher as Dominic to show us how to love. We turn inward, into our plastic world, our well-manicured cyber-reality and deny the fact that God himself is calling us. What profound love He has for us to send such as Dominic in our midst- we may be able to ignore the whisper of God, but we can not ignore the shocking reality of those such as this. Now my prayer is merely "your will be done- may I learn what you intended me to learn in whatever time you give us." But he is not just ours, he is also yours, a living sign of the love God has for all of us. It is my hope you can hear His whisper through Dominic- listen, before it's too late.<br />
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<tr><td class="tr-caption" style="text-align: center;">This July Dominic had emergency surgery for a twisted bowel. We thought our time with him was up. God had other plans.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He teaches us to embrace our cross- just as he embraces his.</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com5tag:blogger.com,1999:blog-6079198385327632755.post-87388760255438322792014-10-07T21:49:00.000-05:002014-10-07T21:49:39.469-05:00Incase you needed a smile...<div class="separator" style="clear: both; text-align: left;">
There is so much to write, so much to say, but this little baby boy in my tummy wants me to go to bed so he can wake up and party. For tonight, here's a little something to brighten your day.</div>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com0tag:blogger.com,1999:blog-6079198385327632755.post-84134297065143886562014-06-12T22:24:00.001-05:002014-06-12T22:24:04.580-05:00"What's so wrong with that"These are the words I heard after confiding to someone a couple years ago that I was too scared to have another baby. I said there was always a chance that the next baby would be like Dominic and I just couldn't take that risk. The response came quickly and simply; innocent and with pure intention. "What's so wrong with that." Those words cut my soul. They made me pause, flush with red glow, turn interior and admittedly get a little embarrassed and mad. What did I just say? Is my whole understanding of life and the value of each and every human person a sham? Do I really wish that no one else like Dominic be born into our family? Did I actually love Dominic and his handicaps like I said I did?<br />
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I remember pausing and looking at this person with the knowledge that all is pure to the pure, and this comment was just that: pure. Dominic was not a burden in this person's eyes, but an amazing blessing from an all-powerful and generous God. Most other people would have tilted their heads and nodded with that sort of pitying agreement that one doesn't mind at times like this. But not this person. This person spoke truth. And truth isn't comfortable and fluffy. Truth about ones self, when it comes from looking into the deepest recesses of one's own heart is miserable, bare, vulnerable, uncomfortable and sometimes even awful. It was these words which cut into my soul, leaving in their wake the bare naked reality of my closed heart.<br />
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It isn't often that something strikes you so deeply, wounds with that beautiful blade of raw truth, that you remember exactly where you were, what the room looked like, the expressions in the faces around you, and your gut feeling when this event took place. I have a hand-full of these memories, most occurring as a child, and this statement added to my collection. Why in these few little words was I so convicted? It is because of this: these words were spoken in love, all comforts and niceties aside, with no regard to making me feel happy in an earthly way, but in an eternal one. The memory is vivid in my mind and since that day years ago I have pondered this question with uncomfortable sincerity.<br />
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It is true another child would make things more difficult. It is true I will always have a huge infant to care for in Dominic (God willing as long as we have him). It is true that my resources may be at times completely spent emotionally, physically, and monetarily. But it isn't all about me. Any parent knows this job isn't about them. It is about these tiny little eternal souls that we have had the privilege to co-create. About their good, and theirs alone. And when we tend to their good, we in consequence enhance our own good. It's a great design, don't you think?<br />
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And so it happened that through these almost three years the fear of "what if" has lifted in my heart and I have become aware of my smallness in this world. I have learned that in this smallness God has chosen me to mother this baby saint Dominic. And it is precisely in the smallness of his forever infant-hood that he has touched countless souls, shown the face of God to those who can not see it elsewhere. Who am I to close myself off to another gift if that is what God desires? And so it is in this that I found my real fear and surprisingly it is not of having another child with special needs, it lies in my selfish desire to be free. It all boiled down to me: how will I do it, how will I transport a baby and a wheelchair, how will I care for two infants at the same time, one just much bigger than the other, how can I ever be independent with <em>another</em> child. And the answer came, as it always does, in the sweet stillness of my heart. My life is not mine, in fact it's not about me at all, but rather about all those I am called to serve while on this earth. About loving the Lord the best I can in the situations He places me by serving those he puts in my path. About the little jobs done lovingly which come with being a housewife and mother, however unglamorous they may be. This is what I am asked to do, what we are all asked to do. Serve where we are. <br />
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<tr><td class="tr-caption" style="text-align: center;">Dominic joyfully finding his newest friend, baby Polly. He wouldn't keep his hands away from her the whole time she was by him.</td></tr>
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In this light saying yes to the possibility of another child is a no-brainer. Another baby would do nothing to Dominic but make his days filled with joyful squeals. He laughs hysterically when a baby cries and seeks them when they are laid down next to him. The other children have been praying for another sibling for years. They see another baby not as a burden that will take up their resources but as a priceless addition to their personal wealth. Another sibling is the best gift we could give them.<br />
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And so it is that we are over-joyed to announce the newest Short baby due Christmas 2014. We are humbled that the Lord has chosen us again to foster another eternal soul who will, God willing, spend his eternity praising God with the Angelic Choirs. My prayer is that this baby is healthy, but in all things, God's perfect will be done, not mine.<br />
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<tr><td class="tr-caption" style="text-align: center;">This is a profile with the baby lying on his/her back, looking up.</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com4tag:blogger.com,1999:blog-6079198385327632755.post-50600938806777981092014-06-02T22:52:00.002-05:002014-06-02T22:53:05.615-05:00My dad taught me all I need to know about GodRemember back when you were a kid to your first trip on a roller coaster. It was hot, the ground smelled like tar, your dad's huge arm was wet with sweat but you didn't mind- that is what held you in to the roller coaster seat. He knew he couldn't trust the safety bar to do the job so he strapped you in behind his strong arm; you were safe. The car started, you were going up higher and higher on the tracks until suddenly you reached the top of the drop off. Now stop. You had so much faith in the protection your dad had over you, but now suddenly when you can see the entire amusement park, when you can see two cities away, you had the smallest glimmer of a doubt. Could he <em>really</em> hold you in?<br />
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This is how I can describe these past almost three years, but more precisely these past 6 months. There have been ups and downs, twists and turns. Sometimes I know my Father is there, other times I panic wondering if he has really got this under control. I have squeezed free of the safety of His arm, trusting myself more than him, just to fly into a complete panic and seek refuge again. I have found that under His strong arm is scary, but I can hide, knowing I cannot be harmed, but outside of that protection is terrifying. Outside of His grasp is utter chaos, mortal danger, certain death. I am a stubborn child; He is a patient Father. I escape, He waits. I seek refuge, He embraces me once again, holding me tighter than before.<br />
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A few months ago I was certain our life was about to come crashing down. I just <em>knew</em> Dominic's time was up. I was in a state of panic, mistrust, and utter agony. Dreadful mourning. Mike told me not to presume God's will- I responded no presumption was present- I just knew, this was it. I didn't write because I was too vulnerable; cut open, bleeding. I didn't want to hear everything was going to be okay, because it wasn't. It just wasn't. Finally I came to peace and waited. But nothing happened. Why? Why did he wake up every morning? Why did he come through surgery okay? Why did the surgeon say everything was great? This isn't the plan! I am ready now- if you're going to take him, then DO IT! Nothing. Stillness. I fly into a mistrust- a sort of crisis. I thought I knew God's plan. I was ready, I begged, He didn't listen. Where was He? Didn't He care?<br />
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Once I prayed for peace and my heart was quieted, I heard Him, a whisper in my soul. He had been there the whole time. Trust. Trust is what he asked from me. Complete abandon. Just like when I was little. The roller coaster would start the fast descent and all my panic would vanish. It was just my dad and me. I held on to his big, strong arm with all my might, a smile across my face knowing everything was going to be okay- my dad had me, <strong>nothing </strong>could hurt me. I may have been shaking from the fear of the unknown but I knew I was safe. He had me. No matter what may come around the next bend, my dad protected me and I knew it.<br />
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God is like this. We are like little children being held in to that roller coaster. He does not let us see what's coming after the next hill. He doesn't say we'll have easy lives with no hardship or sickness. He doesn't say terrible, awful things won't happen to us. He says "Trust Me. I'm enough." All we have to do is hang on, knowing whatever may come He is there... and He won't let us fall. He holds us tight, like my dad did. If we remain in Him, trust in Him whatever may come, He will never fail us. Though I tremble in fear, peace surrounds my soul knowing I belong to Him alone. I am His daughter and that makes me immovable. Even the gates of Hell can not overcome me if I hide behind his great, immovable arm. When the awful time does come when Heaven rejoices over their newest saint, I will no doubt be crushed. But I will remain safe under the protection of my Good God. I will look up to Him and He will say to me "Trust Me, I've got this." And God willing, I will.<br />
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I thank my dad with all that I am for teaching me how to trust my Heavenly Father. The father's job on earth is to show his children some of the truth of our Father in Heaven. He has made it natural for me- I learned to trust my dad which makes trusting God that much easier. Thanks for holding onto me tight. You never failed me.<br />
<br />
Thanks Dad, <br />
Your Dega Bear Hunter<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6KBO2l1HSlIEpt8ZRErgPKqPP0Uv7Z2MKcFIjM0UQKAwGLo6RS_qc3fHYd7w015wMZf_TEWBbqtaFmLW5eGPoCvU3gyDxqTm3TkUXzHhPubM4YjHuRFQGbhm_RliuNTlBf73GysyuL8s/s1600/DSC_0147.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6KBO2l1HSlIEpt8ZRErgPKqPP0Uv7Z2MKcFIjM0UQKAwGLo6RS_qc3fHYd7w015wMZf_TEWBbqtaFmLW5eGPoCvU3gyDxqTm3TkUXzHhPubM4YjHuRFQGbhm_RliuNTlBf73GysyuL8s/s1600/DSC_0147.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A boy and his dad</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com0tag:blogger.com,1999:blog-6079198385327632755.post-28278515699626243222014-03-24T20:46:00.001-06:002014-03-24T20:46:11.078-06:0010 reasons I haven't blogged lately......and why I've abandoned you poor people who love Baby-D and look for his smiling face on new posts :<br />
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1. Dominic is now a professional "de-cannulator" (a.k.a. trach-puller-outer). His trach seems to be coming out more and more often lately. The other day in the car he was on the vent and I noticed his trach looked sideways. Sure enough, it was out and the vent didn't alarm (never does- grrr). Emergency road-side trach change, laughing hysterically afterwards to relieve our nerves (not funny-ha-ha, but funny-can't-believe-this-is-our-life), and a beer afterwards to celebrate his breathing.<br />
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2. Dominic doesn't sleep. At night anyway. He has no regulation in his sleep/wake cycle so he will sleep all day then wake up at night. Of course I have to hold him til' I can't stay awake any longer so he remembers who his momma is, not the sweet African woman he chills out with all night (errr, that would be his nurse- not a random African woman. In case that needed clarification.).<br />
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3. We've moved! God always provides, and this time he provided a new pad for Baby D that has it's own therapy room. It is great, all his equipment in one room, all the home school stuff in another. No co-mingling of therapists talk/school talk. Perfect. I'm trying to figure out how to hang a therapy swing in there... because if I can't work as a PT for now, at least I can have a PT gym in my house. :)<br />
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4. I worked out. Once. But I was way too tired that night to write.<br />
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5. My kids have too much stuff. I seriously thought I would be unpacked in one day. Seriously. Well, 14 is almost the same as 1, right?<br />
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6. Dominic has too many appointments. True, the doctors visits have slowed... and true they are all during the day... but I'm fishing for reasons here.<br />
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7. I'm lazy. There, now the world knows.<br />
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8. I like to read. I have a small window at night to choose one activity only (prior to passing out): reading, talking to Mike, writing a blog, preparing for the next school day. Reading normally wins.<br />
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9. There's been no big news. Well, except all the close death-calls. But hey, that's old hat by now, right?<br />
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10. We got a new neurologist. That technically doesn't count as a reason why I haven't blogged but I have been bummed to loose our old one. He was after all, my favorite Doc. Remember, the big, goofy walking medical school? I love him. Our new one is good too... but he has big shoes to fill. Literally.<br />
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So there, 10 excuses for you. Forgive me. Even if I don't have anything to say, I'll try to post pictures anyway. That's what you really want anyway, right?<br />
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Sleepily yours,<br />
Chasity<br />
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<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYWmAxhAO9RGqruGfnikunvHzL-bV3QkBha6jHbNccu9FbAHE7rPjW4R6kvZpFd5ZQwXnEiVwTjFqcXZkNRJxaQt1Yr3p9V5KqRUdczB-0elMvK9WPm361yFRV90kserHurWF77iZ16p0/s1600/DSC_0004.JPG" height="212" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Anthony received his First Holy Communion last month!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Dm7v0i-Z7J4oeKRzWpbnPZRUc1E8uu2A1VwkFbq2ogs_O_MhyphenhyphenwgEdcWj8cennjqnPhHXF3a3Cy6OMzPjrP7YM_Dj_ABiujenuw-tE4GITZERqj0_Lk33W8fADxVIR8AKk1qcOhFNA7g/s1600/DSC_0106.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Dm7v0i-Z7J4oeKRzWpbnPZRUc1E8uu2A1VwkFbq2ogs_O_MhyphenhyphenwgEdcWj8cennjqnPhHXF3a3Cy6OMzPjrP7YM_Dj_ABiujenuw-tE4GITZERqj0_Lk33W8fADxVIR8AKk1qcOhFNA7g/s1600/DSC_0106.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Afterwards, to celebrate, we brought the whole family to a ranch, thanks to some very good.generous people. There was a little house we stayed in with electricity so Dominic could go. A family retreat- it was the best gift!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMhGVddAajl29W0HMKkk3xH4puos_rTw8ztKoL10SF6l1KOfUJdxImtY2nYYXcy2KdEziYJT1RvVrOYIYtMox7tmgtd47UzQwv9f2qta01IA8ky9ipJ3MQaU78sIeiZpopZRiHJ1KA7KM/s1600/DSC_0149.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMhGVddAajl29W0HMKkk3xH4puos_rTw8ztKoL10SF6l1KOfUJdxImtY2nYYXcy2KdEziYJT1RvVrOYIYtMox7tmgtd47UzQwv9f2qta01IA8ky9ipJ3MQaU78sIeiZpopZRiHJ1KA7KM/s1600/DSC_0149.JPG" height="320" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mike watching the other kids play while Dominic talked in his cute trach-baby way</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdgWQvFgY7aaeYeVAPOZFNC1xuXuuZlxqQJ1CA_nA64m1hxbHQr51zAkIEt2_XNpYCFZ3r2rd1QIk3ZfziotDb6EAxyyzzPLMrsFrMPH4PIT0hayhL9TWSPixvhF4IeTIuDTTjtmxr0TI/s1600/DSC_0162.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdgWQvFgY7aaeYeVAPOZFNC1xuXuuZlxqQJ1CA_nA64m1hxbHQr51zAkIEt2_XNpYCFZ3r2rd1QIk3ZfziotDb6EAxyyzzPLMrsFrMPH4PIT0hayhL9TWSPixvhF4IeTIuDTTjtmxr0TI/s1600/DSC_0162.JPG" height="320" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chillaxin'. He says he could get used to this!</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com2tag:blogger.com,1999:blog-6079198385327632755.post-58202074526909528852014-02-11T22:34:00.001-06:002014-02-11T22:34:17.276-06:00Cowboy Dominic- YeeHaw!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA32FqZ1iANPOdX3HfKAF_17zYpJDVN__OpF69vwRANI4Hr_qj115t8Ekh7oeMLTCK3Ac6cdiDHG0xVld4aTyVIkELcoAYIRnS5xKU_pvBoRKO5NImyOHbW1Np8rriYGqqAKMmajN9ZMM/s1600/DSC_0256.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA32FqZ1iANPOdX3HfKAF_17zYpJDVN__OpF69vwRANI4Hr_qj115t8Ekh7oeMLTCK3Ac6cdiDHG0xVld4aTyVIkELcoAYIRnS5xKU_pvBoRKO5NImyOHbW1Np8rriYGqqAKMmajN9ZMM/s1600/DSC_0256.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dominic getting ready for therapy!</td></tr>
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As soon as we pulled up to the ranch, we were greeted by Dominic's physical therapist, wearing her usual inviting smile along with two Jerusalem donkeys (the kind with crosses on their backs) who were not of the shy type. In fact, they were so eager to greet their new visitors we were wetted by their slobbery, bristly lips while walking to the barn. Mary was not a fan of their boldness and kept hid behind my mom who had escorted us to help out. On the barn porch was a small but rather portly little pig named Hamilton, his muzzle down in a bowl of food, snorting and slobbering his way into Mary Grace's heart. She would have gone closer to play with him but Jasmine and Belle (the donkeys) wanted a lick of that sweet girl, which was enough to deter her from any further friendship with the sweet little piglet.<br />
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We walked into the barn and I was taken aback by the enormous horse who was standing in front of me. Because I have not yet learned a solitary thing about this new type of physical therapy using horses, I assumed a little guy like Dominic would be on a little horse, just his size. But instead there stood in front of us a giant of a horse, a 24 year old draft horse, the type with long fur encircling his ankles. He was being groomed and eating treats, great globs of green-treat slobber falling from his mouth. We patted his head and I helped Dominic feel his fur. Dominic showed his excitement by raising his eyebrows in the curious way he does- that way that speaks for his whole body. That boy sure does have great eyebrows. What he lacks in the ability to express himself with his body, he makes up with great, expressive eyebrows. <br />
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Dominic was fitted with his helmet and off to the arena we went (drove actually because I'm too lazy to carry that big ol' boy that far). I guess by now you are wondering why in the world we are at a ranch, looking a horse, and putting a helmet on Dominic, eh? He has started hippotherapy, which is physical therapy using a horse as a modality, or tool, to facilitate the desired movements in the patient. Children can start at the age of two and his physical therapist just happens to be a certified hippotherapist! Back to the story. To mount the horse, there is a big box, about 4 feet high where we all stand. The therapist mounted first then took Dominic and sat him in front of her. The whole session, there was a horse-leader and two side-walkers (my mom and myself) to make sure Dominic was safe and sound. We walked with that horse around the arena for about 30 minutes and Dominic would off and on smile, showing his pleasure of being on top of his new friend named Dixie. The therapy was fun, but very tiring for him, and after 30 minutes he was just about a little mush-pot. We gave him a rest and our sweet therapist let each of the other kids have a turn riding Dixie for a few minutes. She realized how the siblings of special needs children often get pushed to the side, unable to do the "fun" stuff like play during therapy or get all the attention from the doctors and nurses. I am so grateful for her heart that is open to the needs of the siblings too- that is a rare find to be sure.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1SZS0E6aqEMkbiZs7pmYxtbRk1E6uB2z2XfTL3kiBch-J9sH33q3xjHjNMx6H3YlaJE72IkbzYz3D5iyMW7F_vwBJNr-bSRET_XTYLeJhS2Sg0nu0vhzKD7zi3ZhOZyVFUjGV0LQlogg/s1600/DSC_0259.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1SZS0E6aqEMkbiZs7pmYxtbRk1E6uB2z2XfTL3kiBch-J9sH33q3xjHjNMx6H3YlaJE72IkbzYz3D5iyMW7F_vwBJNr-bSRET_XTYLeJhS2Sg0nu0vhzKD7zi3ZhOZyVFUjGV0LQlogg/s1600/DSC_0259.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MiMi enjoying the beautiful scenery</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuFLgOXxO4c0UwldWz2yly5UPof1SqIEtExxJ8aUHk07OlDw_c1G-bRscHDJISw2_Gew5nyJSptx7f_AlLA0xcjlY4IzINsZnpb70kFrZ98a0uz6-8I3fvgd3-pTJrZ5R_WGYTEXOBZrg/s1600/DSC_0257.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuFLgOXxO4c0UwldWz2yly5UPof1SqIEtExxJ8aUHk07OlDw_c1G-bRscHDJISw2_Gew5nyJSptx7f_AlLA0xcjlY4IzINsZnpb70kFrZ98a0uz6-8I3fvgd3-pTJrZ5R_WGYTEXOBZrg/s1600/DSC_0257.JPG" height="212" width="320" /></a></td></tr>
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After our session, we plopped our tired selves into the van and rode back to the barn where sweet Dixie was un-tacked and let to cool down. We all fed her treat pellets as a reward for doing such a good job and she covered us in green slime, though this time thicker and more abundant due to the hard work she just finished. I was helping Dominic put a pellet up to her lips when I heard that familiar whistle. I looked down and sure enough Dominic's trach had popped right out. I yelled to my mom "the trach is out!" and she ran lightening-fast to the car to get the trach bag. I laid Dominic down on the barn floor (where an hour ago the donkeys were inspecting us) and unable to get the trach in time I used my grimy hands to put the same trach back in- having to touch the part that goes in his neck. He smiled, as usual, when he's given us near-heart attack moments, and I froze for an instant realized what just happened. You'd think you would get use to the whole decannulation thing, but I never seem to. Something about the whole 'can't breathe without this thing and turning blue' business that gets me. I'm sure your nose is wrinkled right now thinking about my horse-slobbered, dust-covered, barn-dirt (nice word for manure) containing hands touching that trach to put it back in, but hey... he's survived worse! And after all, a little dirt is good for kids... right???<br />
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During that session when I saw him slowly start to sit more upright, start to hold his head a little higher, look around as if a tad bit more alert I felt the first glimmer of hope in his improvement that I have had in quite some time. Normally, I fully expect him to continue to decline in function, but that little sweet bag-o-treats just keeps proving me wrong. I am hopeful this new therapy will help him gain the strength to enjoy his family, his home, and his environment just a little bit more. Who knows, maybe he'll even learn to sit all by himself!<br />
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So here's a heart-felt thank you to his sweet therapist and her unyielding commitment to make his life just a little better. Ride on, Cowboy Dom!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcIih4KleHlZvxFy1Qiw-ZV0_-jWkmrjia7Ae8XO5MYi26lJurYdjsOR9xfHvEWWSXAJjoJ5uPBpEvEVtII2JOR1CHJi5hVW8V2_zBCdqmXrR_pdvV3RUkVi8BS85s_wHzHivy8GhWAUg/s1600/DSC_0275.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcIih4KleHlZvxFy1Qiw-ZV0_-jWkmrjia7Ae8XO5MYi26lJurYdjsOR9xfHvEWWSXAJjoJ5uPBpEvEVtII2JOR1CHJi5hVW8V2_zBCdqmXrR_pdvV3RUkVi8BS85s_wHzHivy8GhWAUg/s1600/DSC_0275.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Anthony getting his turn. (Ignore my high-waters. What, you didn't see them til' now? Shucks)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mary Grace refused to go alone so her bug bubba Jake obliged and let her tag along. :)</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com0tag:blogger.com,1999:blog-6079198385327632755.post-27064886939301480322014-01-15T16:13:00.002-06:002014-01-15T16:13:49.252-06:00Dear Angry Dad at the Hospital,I saw you yesterday in the hospital cafeteria play room. You sat in a booth, hunched over in your mechanics work shirt. You were tired, ragged, and damn mad. I saw your kids run around while you waited. You were frowning and had your face buried in your phone. I saw you yell at your children when they asked for attention. All 5 of them. I saw you scold your littlest one, who must have been 4 years old, for not knowing how to put his shoes on. You yelled at the other kids who stole away with your Diet Coke. I saw your teenage daughter's attempted for attention ignored, pushed off. She shrugged it off and went back to her sisters and brothers. I could see the weight of the world on your shoulders. And I get it.<br />
<br />
After all, people don't come hang out in the hospital play room for fun. You're there because one of your children is sick. This could very well be the worst day of your life, the day your child gets that awful diagnosis or the day chemo starts. Maybe you had a fight with your wife this morning and this day that is dragging on and on and on has just gotten the best of you. Surely you have to return to work to finish out your labor intensive day.<br />
<br />
The truth is we've all been there. All of us fellow hospital parents I mean. We've waited those long waits. We've succumbed to the temptation to get pissed at the world, pissed at the staff, pissed because we can't take one more day of hospital food. We've been down and out. Done.<br />
<br />
Our healthy kids have waited too. They've feasted on the crap they pass off as food in the cafeteria. We've given into their incessant pleas for goodies and paid for it with the subsequent sugar highs... and lows. We've watched TV till we saw double and left that same seductive box a little emptier in our souls than when we began. We've gritted our teeth watching the nurses hurt our kids, for the good of our child of course. We've waited. For hours. And hours. And the moment we finally leave the room to grab a quick bite to eat, that elusive person for whom we've already waited 8 hours has come and gone. Impeccable timing.<br />
<br />
It's the waiting that's the worst part. It's the sheer mental and physical exhaustion of just being there, doing nothing, waiting.<br />
<br />
I get it. I understand why you're so dang mad. I've been mad too. Just like you, I've wanted to bury my soul into useless things, to sit with my face illuminated by the glow of my phone or the TV. Actually, I have done this. And I've felt any residual hope, or life, or happiness sucked right out of me during those difficult low moments. The truth is, these pointless things will not get us through, they can't fix what's broken. Being too busy to watch our kids newest amazing acrobatics won't help anyone. Not us, not them. These times are one long, brutal fight. A fight to keep afloat. A fight to keep the faith. A fight to not allow your soul to die off little by little. <br />
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What you need dear Angry Dad, is to put your phone down. To sit, waste time with your kids. Watch their stupid little rolls and tricks. Laugh at their silly antics and their game of chase. Help your kids put their shoes on. It is not only you who is being crushed by the gravity of the illness your sick child has. It's your kids too. And your wife. And any other family you are lucky enough to have standing with you at this terrible time. They are all crushed. Down. Angry. And that is why you must stand. You must be the strength that holds everyone together. You HAVE to be present, to be the safe place your kids can go. The person who can affirm the unfortunate reality of the situation while at the same time hugging that worried child and letting her know you're not going anywhere. And especially your teenager. If you don't hold her, I guarantee she'll find <em>someone</em> who will.<br />
<br />
But know Sir, you are not alone. All of us fellow hospital parents are silently behind you. If nothing more, to just give you that familiar look of understanding. But it is not us that you must rely; it is Him. I have told you to stand, to be the glue. But rest assured, it is not you who will be holding everyone together. You are not strong enough. You are weak. And it is in this weakness that you will find Strength. Allow yourself to be broken down, pleading on your knees, utterly demolished. It is precisely then that your Strength will come, precisely at the moment you admit you can't do it that you will be rescued. Your Strength will be Him. He who carried the weight of the world on his shoulders. He who sweated blood for you. It is Him. You no doubt have been given more than you can handle. After all, if you are never stretched, how would you ever grow? So, rely on His divine providence. His unfailing fidelity. You take the first step, He'll carry you the rest of the way. This will not be easy, but just remember, His grace is sufficient.<br />
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Sincerely,<br />
A fellow hospital parent<br />
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P.S. Please remember these little words of wisdom dear Angry Dad. You may be the one telling them to me next time.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyrjIyRePWTcl3IEzM8euuuxk-bZMIlyi-QRV8KEygvsBNxCo-M-V9G2DGhrKDJx28DeKpHU1DZArSvfcAVBl_lxU1SvYYSZTT8KHcMdWJhxzIW4jrgNYey4PeMnkB7tsnbw5NkBNP_QQ/s1600/the-dream-of-st-joseph-by-rizi.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyrjIyRePWTcl3IEzM8euuuxk-bZMIlyi-QRV8KEygvsBNxCo-M-V9G2DGhrKDJx28DeKpHU1DZArSvfcAVBl_lxU1SvYYSZTT8KHcMdWJhxzIW4jrgNYey4PeMnkB7tsnbw5NkBNP_QQ/s1600/the-dream-of-st-joseph-by-rizi.jpg" height="320" width="215" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"The Dream of St. Joseph." Trust, Angry Dad. Just Trust.<br />
Saint Joseph, pray for us!</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com1tag:blogger.com,1999:blog-6079198385327632755.post-42492074162499991942014-01-13T15:06:00.000-06:002014-01-13T15:36:59.263-06:00Don't cry over spilled... avocado??As you can imagine, there are a lot of spills in our house. Four kids combined with 3 meals and two snacks a day at home, we average a spill a day at least. These are normally no big deal: a glass of milk here, a cup of ice water there, some soup maybe, Fun Dip (blame my mom, she bought it for them), little water puddles under Dominic's vent tubing. Nothing note-worthy really. With the business of homeschooling and preparing (and cleaning) up 3 meals and two snacks every single day of our lives (sigh), you might expect the kids to be the biggest culprits of messes in this family. Well, dear reader, you guessed wrong. I will not spill the beans as to my extreme messiness as a whole, but only give you a little insight into life with me.<br />
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Imagine if you will, 3 hours of washing, chopping, cooking, blending and jarring baby food. My mom and I have already gone through a cup of hot coffee and another glass of iced coffee, the chatter is slowing, we're ready to be done. And then, SMASH! A box my mom was carrying had it's bottom fall out and the result was a big ol' fat hot mess. There was glass mingled with Dominic's breakfast blend: avocado, oatmeal, butter, egg yolks, apples, and bananas <em>everywhere.</em> On the floor, up the cabinets, on the back of our pants, in my Birkenstocks, across the kitchen floor under the dining table, on my shirt. We stood still, silent in complete disbelief. Should we be upset that all that work was now scattered across the floor? Should we be mad at the dang box that broke? We looked at each other in this decisive moment and opted to take the path of hilarity. Loud laughter filled the room mingled with sighs and "oh man's." My sister, who had been cuddling Dominic in the living room, peeked around the corner and saw our mess. Lucky for her, she had only enough time to snap a few pictures before having to leave to get her girls from school. I just stood, staring at the mess- really unsure where to begin cleaning this massive disaster. <br />
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After all the goo covered glass shards were scooped up and the floors mopped, a slippery film remained. We could have mopped a second or third time, but we preferred the danger of repeating the same accident and getting it all done to having to waste any more time cleaning. After all, this is the woman from whom I learned it is better to break you leg and carry 27 grocery bags (and a baby on your hip) in at once than to take a second trip. I am just like her in this way- ferociously, hopelessly stubborn. Luckily though, we finished the rest of the breakfast and dinner foods without further incident, taking special care to walk flat footed across the slimy parts of the floor as to prevent any further spillage. The floor remained nasty for 2 more days (lest you think me super-mom or something) until finally last night I scrubbed the remainder of dried breakfast blend from most every surface in my kitchen. Our main objective after all, upon completion of this labor intensive work that is Dom's food prep, is to collapse on the couch for a few blissful moments of uninterrupted sighing and coffee drinking. A perfect reward for a job well done. <br />
<br />
Here's to you Dominic- I hope you enjoy the rest of your breakfast food that actually made it into the jars and in the freezer. You may be a mess, but you're worth it!<br />
<br />
In and For Them,<br />
Chasity<br />
<br />Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com1tag:blogger.com,1999:blog-6079198385327632755.post-86006689372838322902014-01-08T16:39:00.002-06:002014-01-08T16:39:55.812-06:00Duct Tape and G-ButtonsWouldn't that be a great name to a TV show? Hmmm, maybe sometime in the future. But for now, let me tell you a story. It involves a sweet little man, his g-button, and the night it <em>almost</em> fell out. Mike was feeding Dominic his dinner of yummy, thick, green puree when he gasped- which by the way is a big no-no in our house. In our house a gasp can mean only three things: #1 your or someone else's trach has come out, #2 you or someone else are blue, or #3 some other unimaginable medical emergency is ensuing, usually involving choking or broken bones. So, naturally, a gasp results in all the adults hearts dropping, adrenaline raising, and one or both of us running ready to resuscitate someone, which may or may not be accompanied by pushing little people in the path out of harms way. A false gasp then earns you a stern "if you're not dying, don't make that sound!" scold. Perhaps we need a little R&R to back us away from the edge of the cliff. But I regress.<br />
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As I was saying, Mike gasped, to which sound I immediately attended to what was happening. He was holding his g-button in and told me it was coming out. I didn't quite get it (I was still scanning for purple lips and decannulated trach from that gasp). Again, he told me his button was falling out. So of course I pulled on it to check, because you know, how could I possibly trust this man I've been married to for 11 years who takes care of all of us :/. Sure enough, the balloon that holds it in had busted. Luckily, I had a spare. But then, uh-oh, I remembered I had opened it to use the special tip syringe to re-inflate a g-button a few months ago. And since then, it has gone MIA. This brand new shiny g-button had been made useless by the absence of this magical little special tip syringe that was needed to blow up the balloon that holds it in the tummy. Dang.<br />
<br />
So, like any good red-blooded Texans would, we pulled out the Duct tape. Ok, it wasn't actually Duct tape, but it does make for a more fantastical story. It was plain ol' medical tape. But the fact remains we taped the button to his belly. The poor baby had tape all over his little fat, roll-y self. The last thing we needed was for that button to pop out and 200 mls of 'yummy' green goodness to spout out. The next morning, after a few stressful, careful feedings, I picked up the new g-button and <br />
replaced the broken one. I sure wish I would have taken a picture of this, but alas, I did not find the humor in it while it was happening. It's only now I can laugh at the ridiculousness of this crazy life we're in.<br />
<br />
Here's to keepin' your buttons in and your face pink ;)<br />
<br />
In Them, Chasity<br />
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com3tag:blogger.com,1999:blog-6079198385327632755.post-34068539941304081812013-12-17T16:39:00.004-06:002013-12-17T16:39:55.307-06:00Dominic's Terrible Two's<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">The most handsome little man in all the world</td></tr>
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Until recently, I was convinced of the fact that having Dominic, the little saint that he is, excluded me from the right of passage every parents must endure, commonly known as the 'terrible two's.' You see, all Dominic does is love. He cuddles, smiles, sometimes coo's and "talks." What could he possibly do wrong? There are no temper tantrums, no "sizzling like bacon" fits, no arguing or screaming. No, those are way too tame for our little man. He has chosen to forgo such expected expressions of his two year old rebellion and opt for something a little more, say... original. What our little saint does is far more dangerous: he pulls out his trach. That's right, the little booger-lootsey pulled out his trach. <br />
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I was working in the kitchen with him right next to me in his feeding seat when I froze. A strange sound pierced me ears, a sound of forced air, like a strong wing being blown through a straw. Instantly realizing what that sound meant, I dropped what I was doing and checked him. Sure enough, there was Dominic, smiling mind you, with his trach out, struggling to get any air through his little collapsed airway. I went into a frenzy, grabbed him and laid him on the kitchen floor. I quickly realized I had no spare trachs with me so I scooped him back up and ran to his room, yelling for Jake to bring the suction. By the time I had him on the changing table, he was beeping (his oxygen monitor) and was turning from purple to blue, on his way to grey. I did a quick trach change and gave him the highest flow oxygen our liquid oxygen tank allows until he pinked up. I scolded him as I stood there and shook "Don't EVER do that again" I said, followed with a immediate "thank you, Jesus. Thank you." The kids stood behind me, still as statues, eyes wide like a scared deer. I let out a great sigh of relief and gave the kids a hug. We talked about what happened and they told me they were scared but they were ok (except for Mary, who of course ensured me she was not scared at all. sigh.). We went about our day and finished getting ready for mass. The rest of the day went on as usual.<br />
<br />
I wish I could say this is the only manifestation of his terrible two's, but alas, it is not. He has had several more episodes (though they did not contain the trach being pulled out). He has stopped breathing a time or two and has required some quick thinking, stress filled interventions. So what has he gained from these little escapades? More vent time. He has gone from the vent only at night while sleeping to the vent 12 hours a day and at all times when asleep. Turns out, these aren't due to the terrible two's after all (well, except him pulling his trach out). He was having more episodes of not breathing and of not being able to maintain oxygen levels because of something called residual lung capacity. You see, he is not strong enough to breathe deep enough to keep his lungs inflated, which over time lead to decreased oxygen levels and lots of apnea. This has been reversed by the increased vent time. There doesn't seem to be any going back, not any time soon anyway, to the splendid days without the vent. No, it seems our little saint's rebellion can only be satiated by that loud machine that fills our home with noise and beeps. We are thankful however for that machine, however ridiculously difficult it is to transport, because without it out little saint may have had the rebellion of rebellions. Here's to no more "terrible two's" for Dominic!<br />
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<tr><td class="tr-caption" style="text-align: center;">Some great pictures of our family vacation this summer. Vroooommmmm!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Silly faces with cousins.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">One little, two little, three little...<br />
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com1tag:blogger.com,1999:blog-6079198385327632755.post-17145886627184456222013-11-14T23:06:00.003-06:002013-11-14T23:09:30.499-06:00A new diagnosis and back on the ventA few weeks ago we got a call from the genetics office saying our long-awaited whole exome sequencing results have finally come in (after more than a year) and they have a diagnosis for us. Dominic has something called genitopatellar syndrome, an extremely rare, newly described condition. Never heard of it? Don't feel bad... the geneticist hadn't either (nor the neurologist, pulmonologist, etc...). In fact, it has only been documented 18 times in the medical literature. This is a disease where most affected people don't survive until birth, and and then the majority very shortly after birth. Of the ones who do survive, most die in early childhood while there are at least 3 cases I know of who have survived into pre-pubescent years and the teens years. The syndrome basically describes a bunch of common characteristics that all of the affected children share, such as absent or disfigured patella, severe mental retardation, lack of speech and walking development, hearing problems and a few more. The problem is the list of problems that go along with this disease is no where close to Dominic's problem list, so we and the neurologist are convicted (along with a convincing genetic test) that he may have another disease called hereditary spastic paraplegia. Tests are out on that one. Our little saint is going to be published in the medical literature along with another boy who has been newly diagnosed. His way of being a famous rock star I suppose :).<br />
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Of the kids who did survive to be born, all of the documented cases that I have found have died from apnea. This is where our gratitude to our pulmonologist overflows. We believe it is because of her aggressiveness in giving Dominic a trach and placing him on the vent that he survived. That week we brought him home from the NICU, his apnea was getting much worse and quite frankly he shouldn't have survived. He was turning blue and purple and once even grey. We brought him back to the hospital where he had one very bad day on a regular floor where his oxygen went down into the teens (supposed to be 98-99%) before he was rushed to the ICU and given his trach shortly thereafter. We know our pulmonologist's diligence and care saved his life. Thank you, Dr. Dambro.<br />
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<tr><td class="tr-caption" style="text-align: center;">Remember this? In the NICU, pre-trach.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Our one week at home. Mary fell in love.</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-PmWYGRRU7-0/UATfB-8lqwI/AAAAAAAAAsg/aaALUQixcok/s1600/IMAG0061-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://1.bp.blogspot.com/-PmWYGRRU7-0/UATfB-8lqwI/AAAAAAAAAsg/aaALUQixcok/s320/IMAG0061-1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back to the hospital... his first sleep study that determined he did in fact need a trach.</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-ZFjljvVOU_Q/Trn1MQlEsrI/AAAAAAAAAMw/JraQXPZfeGc/s1600/IMG_20110906_120924%255B1%255D.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-ZFjljvVOU_Q/Trn1MQlEsrI/AAAAAAAAAMw/JraQXPZfeGc/s320/IMG_20110906_120924%255B1%255D.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dominic after receiving his trach and vent. He was so little. Our little crucified baby saint.</td></tr>
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That same week, or maybe the week after... they are all running together... we received news that his home apnea monitor was running out of internal storage due to increased apnea. Turns out it only alarms once the apnea reaches 20 seconds, but it starts recording at 16 seconds. Dominic was having so many short apnea's (between 16 and 20 seconds) that the internal memory was filling up in about a week. Upon finding this out we called the pulmonologist and scheduled a sleep study. But in true Dominic form, he didn't want to wait. After a routine sedation for a lumbar puncture and Botox (he fits in with the rich, bored old women now:), the anesthesiologist didn't feel comfortable sending him home, which earned him a weekend in the luxury resort also known as the children's hospital. (((On a side note, the anesthesiologist looked horrified as I described in a sort of laughing way how we are totally cool bagging him and performing life saving techniques and that it would be completely fine and safe to send him home- we could handle it!... he admitted him anyway))) He had a sleep study on Monday which determined his apnea had grown worse and was now unsafe so he was placed back on the vent at night.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-A7riSA9Ptws/UoWm8nNwP6I/AAAAAAAADc0/_duY5TpV-qA/s1600/CAM00099.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-A7riSA9Ptws/UoWm8nNwP6I/AAAAAAAADc0/_duY5TpV-qA/s320/CAM00099.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mary again, ever the little momma, cuddling her baby bubba</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The kids finding ways to entertain themselves in the hospital room</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Dominic in his latest sleep study... I was lucky to catch a smile. Nothing holds this kid down.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He was one agitated little guy... rough night for all.</td></tr>
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So here we are... a new diagnosis that doesn't tell us much and progression of his apnea. We are dealing with it all very differently: Mike in a very positive, faith-filled, in awe that he even survived pregnancy sort of way, me in my usual "I just need time" way, The boys in a "whatever God's will is" sort of way and Mary in a very excited way... because on the vent he can blow out birthday candles (we take the vent off and point it at the candle so he can "blow" it out). Oh Mary. In any case, God's holy will be done.<br />
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In and For Them,<br />
ChasityShorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com6tag:blogger.com,1999:blog-6079198385327632755.post-77333599615084287132013-11-02T16:26:00.001-06:002013-11-02T16:26:50.371-06:00Dominic's Confirmation- joy and painThere have always been times in my life where God has taken a hold of my heart and changed me. Sometimes these times are small, insignificant events which last but moments or days, and other times these are substantial, life-altering times that re-form my most inner being. The times my heart is changed only for a moment is not due to the lack of grace being poured out upon me, but rather it is cut short by my own stubborn disobedience to His Divine Will. Thankfully God can even overcome this! When He makes my heart fertile ground, the lessons stick, making a lasting impact that literally changes my heart so that I can not even recognize the old me before this event occurred. <br />
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Two weeks ago we had the privilege of experiencing such an event when our little baby saint Dominic was confirmed in the Catholic Church. This is a very special circumstance because confirmation normally occurs as a teenager when a person can make a complete, free choice for themselves. But for Dominic, and for kids like him who are at an immanent threat of sudden death, God in his mercy gives the sacrament of confirmation through His Holy Church at a tender age.<br />
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The joy, the Presence, the gratefulness felt at that moment can not be described in human terms. It is a feeling that still penetrates my heart of pure gratitude and love for our Lord that these words do no justice for. But amid all of the triumphant praises being sent from my heart to His, a real, deep, burning pain enveloped me. I was surprised at the sobs that came forth during the confirmation and especially at my real sense of sorrow and mourning that came afterwards. I wanted to write this sooner, to take you all along with us, but I literally had no words. I would sit empty, hurting, as if a part of me was being severed, in wonderment of why such a joyful occasion would bring such pain. Finally after several days of subtle joy and abundant tears, our Lord revealed the source of this anguish. Because Dominic can not speak for himself, Mike and I spoke for him, and in that moment gave him over completely to God as His soldier, His warrior. My pain stemmed from the tearing away of my own will and handing it over to God, along with my beloved son. In a tangible way, I gave Dominic to God and with this handing over came the realization that God will use Dominic to accomplish His will here on earth for only as long as necessary then He will bring him to Himself to begin his real work. The mother in me cried 'No!' with every fiber of my being, but the servant of our good God said 'yes' with complete submission to His Holy Will. This submission is what caused the physical pain in my heart. Like a proud but sorrowful mother sending her son into war, knowing he is serving the greater good but also knowing he may not return, so was I. <br />
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Since then, the pain has subsided and the wound has begun to close. It is with deep humility and thankfulness that I recognize and admit Dominic is not mine nor Mike's, but we are only his care-takers. He belongs to God and is doing His work here on earth. I submit myself to God's will and God-willing, will be ready when he is brought to begin his real work in Heaven. For now though, we just continue to love, and hug, and kiss, and snuggle this little saint living under our roof for as long as we have him. God never forgets His children and in His great love and mercy has given us the gift of confirmation for Dominic through His Church. To this I am grateful to the point of having no words, only silent praise and thanksgiving in the deepest recesses of my heart. God's mercy endures forever; may His Holy will be done now and forever!<br />
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Totus Tuus,<br />
Chasity<br />
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We are so very grateful to Msgr. Hart for being the hands of Christ and confirming our little saint and to Father Pio Maria for being Dominic's sponsor. Dominic's new name after confirmation is Dominic Kilian Pio. Kilian after the holy priest, Msgr. Kilian Broderick who married Mike and I and Pio after Saint Padre Pio of Pietrelcina. Fitting. :)</div>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com1tag:blogger.com,1999:blog-6079198385327632755.post-69975992350571301262013-09-30T22:33:00.002-05:002013-09-30T22:33:40.835-05:00Dominic's Vocation VideoHello faithful Dominic fans. I have purposefully not posted anything in quite some time in honor of Saint Dominic Kouba whom my last post was written in tribute to. I wanted him to have the top post for as long as possible and I was planning all along to wait until our Dominic's video was released.<br />
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What's that? You didn't know he was a movie star? Well, now you know. Mike and I were asked to do an interview about Dominic's life to be shown at the pro-life banquet for the Diocese of Fort Worth. We were invited to attend and his video was shown to over 700 people. It was humbling, embarrassing, surreal, crazy and overwhelming. We are so used to little baby D, his story and his life that we have moved past the hard emotions into everyday reality. We don't see him as sick or different. He's just Dominic. It's normal now. I realized though at the banquet what a strong impact he has on people when I looked around after the video to see people crying, grown men with tears on the cheeks, tough, weathered, aged men grabbing my arm choking back tears. I was especially moved by one particular priest who looked at me deeply and said thank you. Dominic had preached in his silent, perfect way about the dignity of every human life... even lives like his and the people heard.<br />
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After the event was over a line formed of people waiting to see Dominic, to touch him, to talk to him. One woman asked if she could touch his feet so I took his shoe and sock off and she savored the perfectness of his little foot, overly skinny from un-use, beginning to deform from his condition. People were just drawn to him and we were reminded of his high calling, his vocation... which is to love.<br />
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Here is the video that was shown at the banquet. It is 7 1/2 minutes long and there is an even longer one (the full length video) that hopefully we can post soon. Please share it with as many people as you can- let's all help Dominic fulfill his calling, to proclaim the goodness of our Lord, through showing everyone who will listen his goodness and innate dignity.<br />
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In and for Them,<br />
Chasity<br />
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<a href="http://www.youtube.com/watch?v=0q_WqfTvCXk&feature=youtu.be" target="_blank">http://www.youtube.com/watch?<wbr></wbr>v=0q_WqfTvCXk&feature=youtu.be</a>Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com5tag:blogger.com,1999:blog-6079198385327632755.post-76754299095675094622013-09-06T14:56:00.002-05:002013-09-06T14:58:55.463-05:00A few clarifications about Saint Dominic KoubaWhen I began the post about our newest Saint Dominic the date was September 5th, but when I finished it was well past midnight thus the date stamp on the blog reads September 6th. There is a very important connection that must be made regarding the date he actually departed this world. Saint Dominic Kouba joined the rest of the heavenly company on the morning of September 5th, 2013, the feast day of Blessed Teresa of Calcutta (Mother Teresa), to whom Dominic's mother has a devotion. What kindness and mercy our Lord showed to Dominic's family to bring him home to himself on such an important date for the Kouba family! Surely he was with Blessed Mother Teresa yesterday as they both celebrated their feast day!<br />
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Also, I have had several people assume this Dominic is our Dominic. This is not our Dominic, but rather one of his most treasured friends. They shared the same name and the same blessed simplicity and goodness however. Saint Dominic Kouba has received his reward while our Dominic is still waiting in his most beautiful disobedient body here on earth with us.<br />
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Saint Dominic Kouba, pray for us!<br />
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<tr><td class="tr-caption" style="text-align: center;">Saint Dominic Kouba and our little saint Dominic</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com0tag:blogger.com,1999:blog-6079198385327632755.post-9807641300176525492013-09-06T00:41:00.001-05:002013-09-06T14:58:47.692-05:00Heaven's Newest Saint- Saint Dominic Kouba<div class="separator" style="clear: both; text-align: center;">
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Heaven glories in it's newest Saint while we still on earth mourn the loss of one of God's choosen children. Little baby Dominic Kouba has gained his reward for a life well lived- eternal life- yesterday morning. With the permission of his parents I am sharing the information for his rosary and mass (see below) so that all who loved him, whether you met him or not, may come to celebrate and honor his life. I add the following words on my own accord in hopes that they may provide some sense of comfort, not only to myself, but to all who love this perfect child. It is my hope the following thoughts will be well received by our newest Saint's family...<br />
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When I spoke with Dominic's mother this evening I had the privilege of uniting in her suffering for loosing this precious gift of God. As a mother with a child who could join Saint Dominic Kouba at any moment, I was flooded with the hot anguish of a life cut short. But in that flash of deepest grief and sorrow, a light joy radiated in my heart. A joy that once experienced can never be mistaken as coming from anyone but God himself. Dominic has left his earthly mother for now, but is enjoying his Immaculate Heavenly Mother while he awaits the blessed reunion they will no doubt experience. This life seems so long, especially amidst suffering, but really it is only a blink of an eye and we will again enjoy the precious gifts we have been entrusted with here on Earth.<br />
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Immediately after we hung up the phone the sorrow began to well up and run down my cheeks. I could hear the world say such things as "why would God do this- why didn't he let him live?" But I say it is in precisely times such as these that we are confirmed in our knowledge that our God is a good, just, and sovern God. He gives us gifts without measure and sanctifies us so that we might enjoy eternity with Him. It is in the purest gifts, such as Dominic Kouba, that God allows his mercy and love to overflow upon us. It is in the eyes of a child such as he that we can marvel at the unquenchable desire our Lord has for us. The very fact that we can hold perfection in our arms while awaiting our reward of being in the presence of Everlasting Perfection in Heaven confirms God's boundless love for us. A child is not something to be grasped at, to be demanded when we want and for how long we want. A child, every child, especially special children like our Saint Dominic Kouba, is the most generous gift we could ever hope to receive. We accept these children on God's time and likewise we let go of them on His time. It is in the earthly suffering He allows that we are thrown into the blessed crucible of His love to be purified. It is only in His goodness that he allows His dearest one's to share in a special, intimate way in His cross. His love burns so great that He even gives us as our own mother His Immaculate Mother whom He himself created to be <a href="http://www.catholic.com/magazine/articles/mary-the-ark-of-the-new-covenant" target="_blank">Ark of the New Covenant</a>. It is with this mother that we can unite our pierced hearts, groaning in pain but with full knowledge of the paradise that awaits us. Oh what a privilege it is to be united to Them! But for now, as we mourn in our frail human spirits, we find it difficult to fathom and perhaps even accept God's perfect will. God asks us to trust him in all things... the easy, the hard, the joyful and the painful. And so, through the intercession of Heaven's newest Saint, may we all gain the graces from our Lord to not only accept with strong hearts and trusting souls God's holy will, but trust in the fact that we will, God willing, one day share with Saint Dominic Kouba the beatific vision he is now beholding.<br />
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Saint Dominic Kouba, pray for us!<br />
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<span style="font-family: Arial; font-size: x-small;">Rosary</span></div>
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<span style="font-family: Arial; font-size: x-small;">5:00 PM Friday September 6</span></div>
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<span style="font-family: Arial;"><span style="font-size: x-small;">Mater Dei Catholic Church</span></span></div>
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<span style="font-family: Arial; font-size: x-small;">2030 Texas 356</span></div>
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<span style="font-family: Arial; font-size: x-small;">Irving, TX 75060</span></div>
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<span style="font-family: Arial; font-size: x-small;">Mass </span></div>
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<span style="font-family: Arial; font-size: x-small;">10:00 AM Saturday September 7</span></div>
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<span style="font-family: Arial;"><span style="font-size: x-small;">The solemn Missa de Angelis (Mass of the Angels) will be sung.</span></span></div>
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<span style="font-family: Arial; font-size: x-small;">Mater Dei Catholic Church</span></div>
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<span style="font-family: Arial; font-size: x-small;">2030 Texas 356</span></div>
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<span style="font-family: Arial; font-size: x-small;">Irving, TX 75060</span></div>
Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com5tag:blogger.com,1999:blog-6079198385327632755.post-88148724293748568302013-08-03T09:36:00.003-05:002013-08-03T09:36:56.722-05:00Surgery, tests, and the gift of suffering<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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(((Uhhh, apparently I wrote this while in the hospital and never published it. Sorry :/ Better late than never I guess!)))</div>
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Dominic is coming along quite well. We are now in week 3 of this admission and he is doing pretty well so far. He is still off the vent but is now needing supplemental oxygen. Not much, just a whiff... just enough that we'll have to lug that big ol' oxygen tank around with us. But, no complaints here, at least he is still breathing on his own! He has also had apnea when asleep so at some point this week we will be having a sleep study to determine exactly how often and from what location in the brain the apnea is originating. The results of this study will help us determine if we will continue off the vent at night or if he needs nighttime ventilation again. God's will be done.</div>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-xo_brP8_9gU/Ueai3e_dNRI/AAAAAAAACG4/fuXb_4hz_jU/s1600/IMAG0427.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" iya="true" src="http://4.bp.blogspot.com/-xo_brP8_9gU/Ueai3e_dNRI/AAAAAAAACG4/fuXb_4hz_jU/s320/IMAG0427.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A perk of the hospital life: sitting in your baby lazy-boy watching a baby movie :)</td></tr>
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Tomorrow Dominic will have his surgery, MRI, ABR (sedated hearing test), and nerve conduction velocity test (to check the progress of his hereditary spastic paraplegia). So, start sending those prayers this way! I'm going to be sure when they need to start his IV tonight that we avoid the issues we had last week and forgo the IV team- I want a plain ol' floor nurse- they seem to be a better stick.</div>
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As you may have picked up from my *subtle* distress on my last blog, living in the hospital away from our other kids and Mike is trying. Thankfully I'm married to the best man I know and he took over for 4 days so I could rest and gain some perspective. It was awesome to be with the big kids, my sister and her family, and my parents in Oklahoma for a family reunion. We got to see extended family and the kids literally wore themselves out swimming and playing with their cousins. It was a nice break- much needed. A break from the hospital is always therapeutic, helping you to once again be charitable and patient with the tiny annoyances of living there. It is not big mistakes or blatant transgressions that get to you at the hospital, it's the everyday annoyances, the tiny pin-pricks that build up over time. Suddenly you look up and something the size of an ant suddenly looks like something the size of an elephant. Then you become one of "those moms," and nobody wants to be one of those. <br />
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Something that has helped this admission (uh, except for that one day when I wrote that blog... sigh) is reading this book titled "He Leadeth Me" by Fr. Walter Ciszek. He is a priest who was arrested in Russia and held for 15 years, without anyone knowing what happened to him, all the while suffering in prison and labor camps while finding God's will in the whole matter. I read something yesterday that struck my core. Amid the horrors of hard labor in a prison in Siberia he realized that what he was presented with that day was God's will and it was his job as a priest and Christian to consecrate that day, that situation and give it back to God. He says he learned you are not to <em>endure</em> your daily trials, your monotonous work, your unfair and difficult situations, but rather you are to embrace them with full knowledge that what your are enduring is God's Most Holy Will, a gift He has given you to bring you back to Himself. I can see that truth in the daily grind of hospital life, the daily rituals of care for Dominic, lack of restful sleep, or life with a child such as he. This is not a life to be endured, simply to 'get through,' rather this is a blessed life where in His goodness our Lord has given me these trials as gifts. Gifts, if I accept them, to be given back to Him and along with it a little piece of myself until all that remains in me is Him.<br />
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In and for Them,<br />
Chasity<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-yi218oP7dCI/UeairCZSDpI/AAAAAAAACGo/K1auGFHvBYQ/s1600/IMAG0432.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" iya="true" src="http://4.bp.blogspot.com/-yi218oP7dCI/UeairCZSDpI/AAAAAAAACGo/K1auGFHvBYQ/s320/IMAG0432.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thanks to one of my PT friends who spoiled me with a box of Cheeze It's yesterday, Dominic had his first taste- he was a fan.</td></tr>
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Shorthttp://www.blogger.com/profile/03546917715173624974noreply@blogger.com0