Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Monday, September 1, 2014

"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 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 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!