"Every Child is a Story Yet to be Told."

Sunday, January 27, 2013

Heather Cole--Final Words



Article 4 of 4 in Heather's Journey:

Rhyse and I sat down in the ophthalmologist’s minuscule waiting room inconveniently shaped like a triangle.  There were only nine chairs tightly squeezed together within that triangle, leaving no room for a stroller.  We were back for a simple check up: Rhyse had begun to wear glasses at 11 months old.

It's not too often a visit to a specialist doesn't include a blood draw or shot of some sort, so this appointment was a reprieve for both of us.  

As I looked around the room, at all the other toddlers sitting on their moms' laps, I realized they were ALL eating some sort of dry cereal out of a kiddy bowl. I wasn't prepared for the fleeting jealousy. Sitting there watching the other kids eat twisted my insides into a deep aching for my son to be able to munch on a bowl of cheerios; an ache for normalcy that I continue to deal with. Not for myself, but for Rhyse.  I admit, some days I do get tired of the question, "Why is he so small?"  But then I look into those beautiful gray eyes and know that no matter what, through all the medical challenges, the Lord has been good!

SKIN. That is the name of the Netflix movie that toppled over the monstrous vats of tears that were lined up in my eyes.  This true narrative takes place in South Africa where history is deeply embedded with violent acts of racism, even to this day.  The main character is a young girl born to two white Afrikaans (Afrikaaners are white, dutch Africans in the movie).  The sting of her birth was her color; she wasn't white, her genetics coded black, curly hair and creamy brown skin.  In the age of apartheid, dark skin meant segregation and alienation. The immediate implication was infidelity.  But such was not the case.  She was the child of two white parents.

Today we know why the baby was born with dark skin; genetics.  During the time of the colonization of South Africa by Europeans the gene pool changed.  Sandra Laing, the main character, was called "a shame" in the movie. Throughout the narrative Sandra is terribly cast aside by both her father and society because of her skin color and curly, black hair -- no other reason.

I'm taking a deep breath as I write this.  Rhyse isn't "a shame", nor an outcast, obviously.  He's my pride and joy forever.  But we do live in a world of cruelty, now politically named, "bullying."  As I watched this dramatic movie, I cried for Sandra whom I don't even know. I cried for my adopted daughter, Leah, whose cognitive constraints will always keep her out of the mainstream, "norm." And lastly I cried for my little Rhyse, who is the size of a 6 month old (14 pounds at 15 mos old, and 25.75 inches long), and can't chew real food. 
   
All my protective instincts for his future, and the fears from our scary beginnings melded together and then burst as I watched Sandra Laing's precious life crumble, and become the brunt of every bully.  It’s like during the movie she somehow became my daughter.  The pain that Sandra’s mom went through was palpable.  I could taste it.  I could feel it.  In some way, I could understand. 

These past fifteen months have not been easy, finding new little medical issues around every corner and learning to read his cues to meet his needs.  But I can honestly say that since Rhyse’s entrance into our lives, we as a family have experienced more joy than we ever could have imagined!

Update:

To date Rhyse has just begun feeding therapy, and remains on Peptamen Jr. as his main source of nutrients.  Until two weeks ago, Rhyse was only taking in 8 -11 ounces per 24 hour period. When his intake suddenly changed to 24 ounces his development also took a giant leap forward!  He has become much more vocal, active and instead of wanting to be carried everywhere he wants to use my fingers and walk!  A g-tube has been seriously considered to keep him on a steady stream of nutrients, but his thrombocytopenia and JMML disqualify him as a good candidate, except as a last resort. 

Rhyse’s platelets have held steady all year in the 50-70K range (not great but not bad), and we only had one ER trip last year, for dehydration.  We keep Rhyse on a pulmacort neb treatment daily to decrease his bronchial congestion (from aspirating), and out of the public arena as much as possible to avoid at least some germ exposure, especially during this terrible outbreak of an epic, flu virus.

I conclude this four part series with these thoughts: be encouraged. For those who just received their child’s diagnosis, or just wonder if they’re the “only one” who feels both joy and upheaval on a daily basis — you are not alone!  We truly are ALL human, and do walk in similar paths as others.   Never forget the amazing joy it is to be a parent, no matter what.  No matter the good, no matter the bad.   Every time I walk into the room to get Rhyse out of bed, my heart still leaps with love for him.  I don’t know what he will go through, in his life going forward, but my husband and I pray wisdom and strength over him daily.  For all three kids, we have this blessing EVERY single night, without fail.  They repeat each phrase; “I love you(repeat back to parent); I love you the whole world(repeat); I will always love you (repeat); You are beautiful (I am beautiful); you are gorgeous(I am gorgeous); I love you so much(repeat). May the Lord bless you and keep you, may the Lord shine upon you and be gracious to you. May the Lord show His favor and give you His peace!”  I cannot wait for Rhyse to be able to talk!

Even before Rhyse was born, from the moment I knew I was pregnant my little girls prayed this blessing over him every night, laying hands on my belly.  And I have no doubt, Rhyse is BLESSED!

No comments:

Post a Comment