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!
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