The terrible cost of becoming little

If 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. 

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.

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! 

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.

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. 

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.

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.

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.

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.

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.

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. 

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. 

 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.

In all things, beautiful and terrible, God be praised now and forever.

Keeping vigil

The past few weeks have consisted of something we've grown accustomed to, namely sitting and waiting. 

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.

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. 

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." 

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. 

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. 

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. 

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. 

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.

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
open.

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.

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.

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.

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.

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. 

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.

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. 

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.

************************************

Dominic this summer enjoying his swing

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. 

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
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:

"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."

I will.  Promise.

"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. 

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.

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.

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. 

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.

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.

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.

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.

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. 

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. 

But also joy.

He is our teachable moment

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.

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?

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.

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. 

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. 

4 years- an overview

We re applying for a scholarship for Dominic to get hippotherapy (physical therapy on 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!

 

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. 

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. 

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.

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. 

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.

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.

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.

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.

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. 

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.

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. 

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.

I thank you for your consideration and faith in this little boy who gives big hope.

Dominic's mom,

Chasity

Dominic's little cross- a guest post by Dominic's Daddy

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. 

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. 

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.

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?

From Mike:

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.  This is the second of such surgeries and the third on his intestines.  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.  The surgery was a success again due to the careful attention and skill of Cooke’s surgeons.  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.  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.  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.

This time, however, has been different as myself and our three oldest kids contracted a stomach virus to suffer along with Dominic.  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.  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.  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 1:24).  What is lacking in the suffering of Christ??  Does this mean that Jesus’ death was close, but not quite enough, to make us right with God?  No.  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.

For many, suffering is evil and must be avoided at all costs.  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.  Jesus’ suffering wasn’t something that happened to Him.  Rather, it was something that He willed for the redemption of the world.  This changes everything!  For those that know Him, he shows us how to suffer and participate with Him in His redemptive work.   

This is not to say that suffering is good…it’s not.  God never intended this in his plan for us, but due to the rebellious heart of his creatures, it is here.  The painful reality is that suffering is something each and every one of us must deal with.  Often.  But whenever it comes, however it comes, we have a choice:  I can either waste it or I can use it.  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.  I wanted to share this with you all since Dominic’s emergency has made me slow down and contemplate the meaning of suffering.  I am convinced that his mission is to lead us and others to Christ, and he is succeeding in his mission once again.  We have had an out pouring of prayers and support, which has been overwhelming.  Please keep Dominic in your prayers for a speedy recovery. 

Our Lady of Sorrows, pray for us!

Sacred Heart of Jesus, Have Mercy on Us!

It'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:

The "Easter Bunny," (aka PawPaw) gave us a bunny... without prior parental permission... because we "always say no."  So, there's that...

Dominic loves his baby bubba Kolbe

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.

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.

...And Daddy is kind of a stud...

...Cause he shoots stuff and climbs high things...

...and then flips over them like it's nobody's business.

Dominic had a power wheelchair trial where he got to try out using a power chair for the first time!

I had to help him find the joystick, but once I did...

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. 

So, next time you come to our house, we may or may not have drywall... it's over-rated any how.

Dominic is getting Kolbe back for pulling his trach out.  "Take that Bubba!"

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!

And Kolbe is getting huge- how does that happen!  This is him trying food for the first time.  he hated it.

Dominic is kneeling in therapy and jamming to old country- his favorite singer is Johnny Cash, thank you very much.

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.

Finally he gets to sit down- look at the relief and happiness on this boys face!

And this happened- cuteness

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

But sweet Dominic always forgives him :)

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. :)

He'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!

Pink and alert right away

 

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.

 

St. Maximilian Kolbe and St. Francis, pray for us!

 

 

"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.

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.

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.

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."

Please pray for a safe delivery for Kolbe and myself.  May God be glorified in all things!

It'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?

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.

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:

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.

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.

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.

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.

This July Dominic had emergency surgery for a twisted bowel.  We thought our time with him was up.  God had other plans.

He teaches us to embrace our cross- just as he embraces his.

Incase you needed a smile...

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.

 

"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?

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.

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.

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?

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 another 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. 

Dominic joyfully finding his newest friend, baby Polly.  He wouldn't keep his hands away from her the whole time she was by him.

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.

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.

This is a profile with the baby lying on his/her back, looking up.

My dad taught me all I need to know about God

Remember 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 really hold you in?

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.

A few months ago I was certain our life was about to come crashing down.  I just knew 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?

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, nothing 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.

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.

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.

Thanks Dad,
Your  Dega Bear Hunter

A boy and his dad