Thursday, January 21, 2016

Personal Update: Our Son's Diagnosis

     Hello everyone!  I would like to take a moment and preface this post by first thanking each and every one of you that support me by taking the time to stop by and read my blog.   A Beauty in the Chaos has grown exponentially in readership this past month and I am unbelievably thankful.  Today's post is going to be a little different than my traditional fare.  It is a subject that is incredibly difficult to write or to even speak about, so please bear with me.

     This past Tuesday I had to face a neurologist who looked me in the eyes and told me my child has Spastic Monoplegia Cerebral Palsy.  For my husband and myself, the diagnosis was not a shock.  Our son has been in physical therapy since he came home from the NICU and all signs pointed to some form of Cerebral Palsy.  This was essentially a formality.  Formal documentation of what we had known (feared) all along.

     One would think having some foresight would help ease the news of the diagnosis.  In a way it does.  I can't imagine having this news dropped on me completely unexpectedly.  But, in a different way hearing the confirmation was harder.

     See despite my tendencies to always prepare for the worst outcomes possible, I am at heart an optimist.  These past two years, I have never lost hope that perhaps my son would grow out of the troubles he was experiencing.  That it was for (lack of better definition) just a delay in physical development due to being born 3 months early, a delay he would eventually catch up with. That eventually the physical therapy he gets twice a week, the extra doctors appointments, the shoe inserts, the braces, all of that would be outgrown and left behind.

     When the neurologist said the words Cerebral Palsy, she didn't cast some sort of bleak future for my son (he's in the highest functioning group and his prognosis is good).  And logically I know that ultimately very little has changed for my son, his life continues as it always has.  He will still have a fulfilling future, his path is just a little different now. Yet emotionally I am a wreck.  Because with those two words, that tiny piece of hope died in me.  My son won't outgrow this.  There is brain damage, it is permanent. It's hard to remain optimistic about the future when so often life hacks away at our slivers of hope.

     We as parents try so hard to shelter our children (especially young ones) from the harsh cruelties that life can hand out.   We dread the day when we might have to wipe tears from our son or daughter's face because they were teased at school.  I am terrified of what my son may face due to his apparent difference.  I'm no longer tasked only with raising a strong, compassionate, and confident child, but also finding a way to be strong and confident myself regarding his condition.  To keep my composure when someone makes an offhanded remark regarding his walking or appearance, when what I really want to do is lash out at them about their ignorance.  Because that's what I want my son to learn.  Not just how to deal physically with his condition, but how to deal emotionally with the bullshit he may encounter.

     Again I would like to thank each of you who takes the time to check in here.  Much of this blog is essentially a type of therapy for me as well as a hobby.  Yes, it gives me a forum to express my feelings and thoughts when stuff is bringing me down. But more importantly it provides a space where I can focus on the people and things that make me happy.  Even if it is something as trivial as a new eye shadow palette. Focusing on what makes us happy is sometimes the only way we can combat the chaos that life hands us.

Love and thanks to everyone reading this.  Thank you so much for supporting me an this blog.  I will return next week (if not sooner)!



I'm very sorry to hear about your son's diagnosis. I have a 2 year old, and every parent's worst nightmare is having something bad happen to their child. It might be a challenging journey, but I hope you find comfort from the support of friends, families, readers, and strangers.

Thank you for your kind words! It most likely will be challenging, but every single one of us has our own set of challenges. Especially as parents! 2 years old is NOT an easy age! Take care!

Post a Comment

Twitter Delicious Facebook Digg Stumbleupon Favorites More