Tuesday, January 16, 2018

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.

Wednesday, January 11, 2017

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

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.

Tuesday, September 13, 2016


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.

Saturday, January 23, 2016

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. 

Tuesday, November 17, 2015

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,

Sunday, November 1, 2015

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!

Thursday, June 4, 2015

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. :)