The warmth of the sun

There are defining moments in life.  Seconds that change everything.  The term "in a blink of an eye" is sickeningly accurate.  I am fully aware that our lives will NEVER be the same again.  

In the beginning we were living second to second..willing Xavier to just hang on.  When we realized Xavier was going to live we started focusing on making it through the hours.  The time came when we could plan out the day and make 24 hour goals.  Now that we are on the floor and out of the ICU we are looking at weeks, that's right, we are planning out each week now! 

Don't get me wrong we still don't know how each day will be.  Some days Xavier is smiling, giggling, calm and able to participate in therapy and some days (like today) he is depressed, in pain, stressed out and spends the day crying.  It's really hard to watch and feels like we are taking leaps backward.  We are still dealing with major belly issues (cramping, bloating, gas, vomiting) and from time to time weird rhythms.  However from a cardiovascular standpoint he looks good.  His liver is "hard to find" and thats the way its suppose to be.  His most recent echo has been described as robust!  But we still have a long way to go before rehab.  He needs to come off all his IV meds, and we need to get his belly issues and feeding intolerance under control.  He will go on Tuesday for a G tube, a feeding tube that goes directly into the belly s we can get that feeding tube out of his throat.  

Poor little guy has been through so much and still has such a battle ahead of him.  And it just breaks me to not be able to help him.  I sit with him during therapy and will him under my breath to move, just move his hand, just pick up his head, just reach out and take the toy....please!  It's beyond exhausting just watching him work so hard.  Sitting in this hospital hour after hour just sucks the life out of you.  Only sleeping a few hour a night takes its toll.  I have bags under my eyes, my hair is always a mess, my skin is dry, I'm going gray and I'm wearing a hole in my sweatpants.  

I can't describe the ache I feel when I have to say goodbye to Elliott, when my mom calls to tell me something new she is doing.  My sweet girl is growing up, turning into her own person and I'm missing it.  But on the days I leave Xavier with Nate to go home to her, leaving him is torture.  If only my heart were the broken one, I could leave a piece with both of them.  

These last two months have been like nothing I have ever experienced.  It's like being in an eternal winter, just begging to feel the warmth of the sun again.  Longing to be warm, to find a reason to smile.  But this journey has also changed me for the better.  Helped me to see the good in people, brought new and wonderful people into my life, made friendships stronger and given us a testimonial to the miracles of God and the blessings of life.  It has opened up opportunities for me from an advocate perspective.  And seeing the indescribable strength and fight that is in Xavier is breathtaking.  

The days are still long and hard.  Some days I smile and some days I sit here and cry.  Some days I chat and laugh with the nurses and some days I am questioning and testing every decision.  But everyday, every minute I am thankful, grateful, blessed....and closer to feeling the warmth of the sun. 

    My sleepy boy

    Laughing at mommy

  My sweet girl visiting her big brother in the hospital

   Wearing his therapy splint..he is NOT a fan!!

One week later....

So here we sit....Nate on the plastic couch and me on the plastic chair, staring at a peaceful, sleeping Xavier.  He has a feeding tube and CPAP nasal cannula in his nose.  Two cheats tubes coming from his chest.  6 thin little wires coming through his skin.  He has an IV in both legs, and more leads then I can count.  He has his spider man sheets on his bed and his room is filled with super hero balloons.  

Today is one week post fontan.  Ideally we would be toward the end of this very long journey.  I should be updating with mile stones like:  he walked to the playroom today or he got his chest tubes out.  Instead my updates consist of me asking for prayers and talking about his neurological progress for the day, which moves at a snails pace.  

Last Thursday morning Xavier suffered an internal bleed leading to cardiac arrest.  He had emergent bedside surgery and suffered from lack of oxygen.  He has been struggling to survive but creeps forward a bit each day.  We are playing a waiting game and all anyone can tell us about his recovery is that it will take TIME...a whole lot of TIME.  He has some good things going for him.  His age for one because his brain is immature and still has a lot of growing to do he has the ability to repair some of the damage and also find new pathways around the damage (really really amazing), his developmental delays also are to his advantage because his brain was more immature then a normally developing three year old.  His body temperature was lower then normal at the time of the arrest which is also excellent for his brain.

Those moments, when I realized that something  was wrong with him are burned into my brain.  I keep replaying what I could have done different, how I could have stopped this from happening.  With all this time to just sit her and ponder, sit here and pray I have decided that this was something that was out of my control.  Just like his heart to begin with nothing I can do or say can change his path.  So I am trying my best to stand tall on my faith and walk with God through this one.  I know The Lord is round about Xavier.  Carrying him out of the darkness and into the light....I believe that his healing has already happened, and now we must wait for it to manifest itself.  

We have been told that there is no way of knowing what parts of his brain are damaged because he can't have an MRI due to his pacemaker.  The CT scan showed no swelling, very little bleeding and he had very little seizure activity that was stopped with medicine.  He can open his eyes but struggles to focus, he responds to pain and vocalizes when he is mad.  He gets upset when he needs a new diaper, he is peeing and pooping and finally today is starting a wake, sleep cycle.  All of these things are positive....so each day we look for just the smallest improvement.  We are keeping his room dark and quiet, playing him relaxing music and trying not to touch him to much.  We find ourselves in our own special type of purgatory.  The highs feel incredible high and the lows feel too low.  However, we find comfort in each other, in Elliott, our families, our friends, the heart community, our religious community and Xavier's online community that has grown to close to 800 followers.  We have people praying from all over the world, representing different religions and beliefs.  We have people coming to pray over him, people doing healing reiki, the worlds best cardiac doctors and nurses planning, plotting and rerouting the path we must take.  We have by far the worlds best pediatric cardiac neurologist working with him.   We know it is a miracle that he is alive, it defies medicine and amazes the staff here.  We know that God is currently working a miracle on his brain.  He is amazing every single person on this floor.  He is loved here, he is taken care of here..this is the place where he will get a second chance at life.

Xavier has a purpose, something that is way bigger then me.  I just happen to have the privilege of being the one who gets the front row seat to the show.  What an honor to be his mommy, to get to walk this journey with him.  What a humbling experience to have this miracle bestowed upon me.  

When I was sitting with the social worker and the Chaplin, in a small conference room on the cardiac floor, waiting to hear the outcome of his "event" I prepared myself for his time on Earth to be over.  I told God that if he allowed me to keep my baby I would nurture him and help him to fulfill his purpose under heaven.  Here we are a week later and he is alive and talk of recovery has begun.  Xavier's neurological recovery will be long...years for sure.  But I know with time and therapy and God he will do amazing things!!!

"Will he ever.....???"

I've shared so much about Xavier's heart and the struggle that comes with that.  It has been by far the most difficult, rewarding and eye opening experience to be his mommy.  I've seen miracles happen right before my eyes and felt true raw fear.  I've experienced pure joy and unimaginable sadness and I've become a much better person thanks to him.  

What I have not been as forth coming with are the "other" struggles that Xavier faces as a result of his heart.  Xavier has global developmental delays and sensory processing disorder, which also has an impact on his ability to naturally move through the developmental stages.  He gets hours of therapy each week and see multiple developmental specialists.  Not all heart kids experience delays like this, but many do.  Enough do that top hospital, such as CHOP, have started neurological cardiac clinics in order to follow the early development of this population of kids and provide services to them as soon as possible, thus giving them the best chance of overcoming their delays.  

Xavier works very hard and "normal" toddler things are a struggle for him.  Walking was very difficult, but he worked very hard with a wonderful physical therapist who did the right amount of pushing balanced with the right amount of nurturing.  This philosophy allowed Xavier to develop in his own time and he went from walking, to climbing stairs and running in under a year.  

Xavier still struggles with language.  He is, at this point, considered non-verbal.  He communicates with us by using sign language ( he has over 60 signs and yes I am bragging) and by pointing, gesturing and physically bringing us to what he wants.  With a ton of therapy, he has started to babble ( something he never did as an infant thanks to his strider and paralyzed vocal cord) and we are hearing isolated sounds....M,B,E,Sh....he has a language motor delay called childhood apraxia of speech.  He has all the words, understands everything you say, is able to identify objects and their purpose, but has a misfire in his brain when it comes to dictating to his mouth how to physically make the words.  This makes me sad for him, because he knows what he wants to say and attempts the words, but just can't make it happen.  This creates so much frustration for him and he acts out because of it.  We are working with a developmental pediatrician and a developmental play therapist to help him deal with and work past his frustration. 

 Xavier also struggles with oral development.  He has low tone in his mouth so drinking from a straw or a cup are hard for him.  He has no interest in eating from a spoon, but will self feed.  He works very hard to over come these things that just happen naturally for other children.  Watching Elliott swiftly and effortlessly move through her developmental stages amazes me.  She just does it, where Xavier needs to be taught and needs to work at those stages.  

We live in a world of "what ifs" not only about his health and heart, but also about his development.  What if he doesn't walk ( he proved us wrong with that one), what if he never talks, what if he struggles in school, what if other kids make fun of him, what if he never finds a friend who will love him for him (he is the coolest kid on the planet, so I feel bad for anyone who doesn't get to know him, but we all know how being different is not always seen to be as awesome as it is)....but Xavier never ceases to amaze us...just when we start to doubt him he proves us wrong again and again (you would think by now I would have learned to not count him out).  He may not develop at the same rate as other kids, but he continues to move forward.  He is writing his own story and stepping outside the box and showing those professionals that you can march to your own cadence and reach the destination in your own time.  

After surgery and recovery we have Xavier lined up for a preschool.  We know that this will stimulate his development even further.  We are so excited to watch him grow and mature in an educational setting.  

Having a child with medical needs is difficult and life changing.  Have a kid with both medical and developmental needs requires a strength I never knew I had.  It brings out the worst and the best in me.  I will continue to push and nurture Xavier, help him to continue on the only path that God has provided for us....the path forward.  

To other moms, both heart moms and moms of healthy children dealing with developmental delays in their children I say this:  celebrate every little thing...no matter what others say.  You know how difficult it was for your child to sit through the noise of a parade and keep it together, how hard they worked to "play" at the playground today, how difficult is was for both of you to let him go to school for the first time, what a big deal it was that she ate 10 bites of a sandwich and didn't gag, how much work it took him to bear weight on his legs, how hard certain situations are for them and yet they power through.  Celebrate all those victories and milestones.  Celebrate the hard work your kids put into their lives...it is making them into amazing human beings and making you into a better person with each moment that passes.  I use to fear new things, things that I thought might trigger Xavier...not anymore.  We tackle those things head on, together.  And then, just like that,  the day comes where "that" thing is no longer an issue.  He tackles each mountain and soon enough he is on the other side, better and stronger then before!  

Time marches on

Time doesn't care what your plans are, what you want to do, what you dream of doing, how stressed out you are or how you don't know if you can deal with this again...Time marches on...consistent, with a beat and a cadence..tick, tock, tick, tock....

Time doesn't care that we have a routine, that Xavier has fallen in love with his baby sister.  Time doesn't care that Xavier loves going to his play group or is ready to move up to a new swim class.  It doesn't care that going to the park is important to X....it just keeps marching on...tick, tock, tick, tock....

Each day seems to go faster then the next, sweeping us off to the fontan..brining us closer to long days and longer nights in the ICU listening to the beeping of machines.  Time keeps brining us closer to being separated as a family, Nate and I splitting up time at the hospital, time at home with Elliott, grandparents stepping in to do our jobs as parents,

bringing us closer to the constant rotation of bedside watchers.  Tick, tock, tick, tock

But when that call came in...TIME STOPPED.  All I could hear was my heartbeat and the voice on the other line rattling off a list of dates....September 24 th it is....the final scheduled surgical repair for Xavier's special heart.  

So with the remaining time till we fight the next battle in this war we will be free.  We will swing at the park and swim in the pool.  We will go to the beach and spend time with family.  We will pray and cry and curse CHDs.  We will live in the moment and thank God for all our blessings.  

As we get closer we ask for your prayers.  We ask that you keep not only Xavier, but our family in your thoughts.  And we thank you for supporting us in this journey.  

I mourn....

Three years later and I find that I am still in mourning...

 In labor with Xavier!

 I mourn the loss of stillness in my life.  From the moment that we received Xavier's diagnosis I lost all stillness.  I remember sitting on my fathers lap, sobbing because I knew that I would never have a moment of stillness again.  I would always from that point on have some form of worry in my mind for this child.  I knew that I would never again soak in the tub and have peace.  I would never be able to lose myself in a book, completely relax in the sun...there will always, for the rest of my time on earth be worry in my mind.  I have accepted that, I have learned to live with it and fight against it....but I miss being carefree, worry free...if only for a moment of stillness.

He is finally here!

I mourn the loss of other children walking the journey with us.  Some I have known, held, hugged, laughed with.  Others I only know by a picture but it does not make the loss any less painful, any less real.  To see my friends mourn the loss of their child...it leaves a scar on my soul.  And it reminds my heart of how fragile our "healthy looking" kids really are.

Recovering from his Norwood

I mourn the loss of ignorance.  I long for the days when HLHS, PLE, ECMO meant nothing to me.  I wish I had no clue what plastic bronchitis was.  I wish I didn't have to research the fontan, liver biopsies, tricuspid valve replacements....I wish I didn't know what it feels like to sign a consent where the number one risk is death.  I wish I wasn't a pro at giving my three year old a shot or testing his pacemaker.  I wish Xavier wasn't a pro at laying still for an ECHO or facing the dreaded blood draw.  I could go the rest of my life not worrying about heart failure, exposure to toxic medications that are keeping him alive.  I wish I didn't have to wonder what prolonged lovenox injections are doing to his bones, prolong lasix is doing to his kidneys and for the love of God, do not google the side effects of amiodarone...the drug that helped him recover from his last surgery.  There was a time I had no clue what oxygen saturations were, what the normal heart rate was for a two year old or what sensory processing disorder was.  I know and have seen too much for my own good.

Recovering from his Glen

I mourn for my parents, my in laws, my husband, my brother and sister in law and for my daughter.  All of those people who are affected by this awful disease.  They were thrown into this journey just as we were.  They worry about not only Xavier but us as well.  I can't image how my mother must feel seeing her daughter stress and worry so much about her child.  She not only worries for Xavier but for me as well.  Our family "holds down the fort" while we are gone for weeks at a time.  Keep things in working order.  They analyze every sneeze and cough...wondering if they should come visit...they wash their hands raw worrying about getting him sick...they watch their sweet grandson struggle with development and watch us work so hard to help him catch up.  They celebrate wholeheartedly as he reaches little milestones a year later than his peers..reminding us that he will do things in his own time.  I mourn for my sweet baby Elliott who has no idea that her beloved big brother is sick.  At 5 months old she simply adores him and loves to watch him walk around and play.  The way they look at each other is priceless.  She will one day come to learn that he has a sick heart.  She will visit him in the hospital and will carry her own burden that goes along with being a heart sibling.  She will make trips to the hospital to cheer him up and have so many questions that I hope to be equipped to answer.

Recovering from his valve repair/pacemaker

I mourn.....

daily, hourly but I also celebrate and all I have to do is to look at him and I smile....I thank God that he is here with me TODAY.  I take a deep breath and remind myself that tomorrow is not promised and that I need to live in the moment.  I treasure every hug, smile, laugh, and temper tantrum.  We celebrate three years with our miracle on the 28th...the baby that we could only hope to have three minutes with....WHAT A BLESSING.

TODAY!!!

Xavier goes in for a heart cath next Monday, June 2nd.  This is the first step toward finishing his repair.  Your well wishes, prayers, and positive thoughts are appreciated today and always.  Thank you all for taking this journey with us.  May God bless you today and all the days of your life!

Dear Xavier

Dear Xavier,


My strong warrior...do you know how amazing you are?  How strong and how special?  You've had such a huge impact on our lives..you made me better!!!!

I can't believe I waited so long to do this for you. Your life has been such a journey in the 2 1/2 years we have had you.  Your so strong!  From the moment you were born you kicked serious butt!  We were scared when we found out about your heart, but we prayed and found faith that together we would not just get through this journey but that we would laugh, play, run, jump and sing our way through it.

I am sure by now you have noticed that scar on your chest.  The ones on your side.  I bet you can feel your pacemaker and your have figured out that we go to the doctor and hospital A LOT.  Well dear boy you were made with a special heart.  You were made by God, perfectly imperfect.  You are exactly the way you were meant to be.  Mommy and Daddy have found  you the worlds best cardiac team to take care of you and together we will concur this and rejoice in the miracle that is your life.

But enough about your heart....let's talk about you.  Your a fantastic little guy...Your funny, you have the best laugh and EVERYONE talks about how amazing your smile is.  Lately you love trains, cars, the IPAD and hanging out with me.  I hope it's like that forever. We make a great team.  You worked very hard to learn to walk and baby you should see you now!!!  Your running!  Your still working on learning to talk but it's coming.  Your so smart.  You know all your colors and letters...you follow directions well (most of the time)  and you have 65 signs!!!  Some things are a struggle for you, but you never give up...you follow your own path and do things in your own time and I totally dig that about you.  You learn something new everyday..it's pretty cool to watch.  What a blessing that I get to be a part of who you are.

Now that your a big brother your learning about patience and waiting your turn.  I know it's hard but you do your best and that's really all we can ask.  You watch over Elliott and your such a good helper with her.  I know you will grow to be best friends.  The thought of that makes me happy.

Life isn't easy or fair Xavier!  Your life will be painful at times, scary at times and you may ask why me...but I promise you that your life will always be blessed and full.  Mommy has created a network of support for you.  You will always have someone in our life who will understand.  You are and will continue to change people, to have an impact.  So very many adore you!!

Together as a family we will tackle the obstacles in life.  Surgeries, procedures, illness, heart break (the kind you will feel when some girl can't see how amazing you are), bullies, that horrible algebra class and  the time you didn't win.  We will celebrate all the amazing times to come.  First days, that A+ you worked so hard for, discharges from CHOP, graduations, first love, dancing at your wedding.....

Your future is so bright!!!!!!  I'm excited for this ride...I'm blessed to be your mommy, your best friend and your biggest fan!!!  ROCK ON X-MAN!!!