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. :)

Saturday, January 24, 2015

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!

Monday, December 22, 2014

"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!

Thursday, November 20, 2014

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.

Tuesday, October 7, 2014

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.