The Perfect Family
“I’m pregnant.”
The words came
without warning. She simply dropped them into a lull in the conversation as
though she were making an everyday observation. She might have said it was
supposed to rain the next morning. Her tone was light and perfectly calm, her
expression serious.
I was stirring
something in a pot on the stove, and I turned abruptly, my wooden spoon leaving
a trail of liquid across the kitchen tile. I looked at my sister-in-law
intently, searching for a hint of humor beneath the surface, a sign she was
messing with us.
There was none.
“You’re . . .
joking?” I asked, falteringly.
She shook her
head.
Heather’s
pregnancy came as a shock. She had thought her family was complete. But God –
he was on another page. He had something special in mind for Heather, Jon, and
their two girls. Or rather, he had them
in mind for someone else.
###
Seven months
later, after months of morning sickness, a challenging bout with gestational
diabetes, and burgeoning worries when third trimester ultrasounds showed that
Heather’s placenta was calcifying, Rhyse Addyson Cole entered the world. He
came quickly, both during labor and at the end of it, his father catching him
like a football as he exited the birth canal in a rush of life-giving fluid.
We went to the
hospital the afternoon of his birth, the entire extended family crowding into
Heather’s postpartum room, passing the newest member around like a shared
treat. He was the tiniest baby I’d ever held, a mere five pounds four ounces,
with swirls of surprising red hair that led Heather to joke that maybe he was
really the mailman’s son. Jon smile was the widest we’d ever seen it.
Rhyse charmed us
all that first afternoon, his tiny, perfect face relaxed and calm, his eyes
seeming to take the measure of each of us like a wise old soul. Both Eli and I
snuggled him close and smiled at Heather’s hints to us that Rhyse needed a
cousin close to his age. We had no idea that we were already pregnant. We drove
home from the hospital feeling nothing more than a deep thankfulness that this
longed-for and deeply loved little boy had safely arrived.
My phone rang just
before 5 a.m. the next morning, pulling us from deep slumber. When I saw Jon’s
name on the caller ID, I came fully awake with a jolt. Even before I answered,
I knew there could be only one reason for Jon to call so early. Something had to be wrong with Heather or
the baby.
The days and weeks that followed were filled with
mystery as the doctors searched for an explanation for Rhyse’s unique medical
state. A fearsome low blood platelet count spurred the hospital OB to rush
Rhyse via ambulance to the nearest children’s hospital. Finally, after six
weeks in the NICU that involved countless tests, numerous platelet
transfusions, and all kinds of other medical intercessions no infant should
have to endure, Heather and Jon received a tentative diagnosis, one that would
require further testing before it could be made formal. Rhyse had Noonan
Syndrome.
Noonan Syndrome. None of us had ever
heard of it. Heather and Jon had to educate themselves out of necessity, and
they did their best to educate the rest of us in turn. In the end, all we could
really be sure of was that nothing was certain. Noonans looks different on
every child, and we had no idea how it was going to look on Rhyse.
###
It’s been over two years since Rhyse was diagnosed
with Noonans, and it’s safe to say he’s become the light of our collective
family life. He has proven himself hardier than any toughened adult, undergoing
constant assessment and treatment for everything from feeding issues to
breathing problems. He has a team of twelve specialists who are regularly
reassessing his needs. He has a G-tube. He gets twice daily steroid shots to
help him grow and will continue to do so until he’s 18 years old. He gets
nightly breathing treatments and will soon have both his tonsils and adenoids
removed in order to improve his ability to breathe while he’s lying down. But
these medical pieces, while they are a big part of Rhyse’s life, do not define
him. Far from it.
What does
define him? The same things that define any two-year-old. Bottomless curiosity.
The desire to make his own place of significance within his family and his
world. That unmistakable toddler mix of courage and timidity. The hunger to be
heard, understood, respected, and valued.
When we think of Rhyse, we don’t think of Noonan Syndrome.
We think of our spunky red-headed nephew with the unshakable sense of humor.
The one who loves and fights with his older sisters like any little brother.
The one who loves to tease his daddy. The one who, in spite of delayed verbal
development, communicates his needs, wants, and feelings as clearly as can be.
The one who loves cars and trucks as though it’s in his DNA. The one who is
bright and intuitive and can read the atmosphere in a room as well as any
psychologist. The one who wants, just like any other child, to be loved and
snuggled and teased and talked to.
 |
| Rhyse and Lili |
We live halfway across the country now, and most of
our time together consists of sending each other videos or making time to
Skype. When we do, we don’t see a sick child, or a struggling child, or an
abnormal child. We see a happy, active little boy yelling and running and
playing and just having a ball being
alive.
He and our daughter, Lili, who is nine months younger, wave to each other
gleefully across the miles, always excited to see each other, even if it’s only
via a computer screen. Indeed, Lili’s favorite “TV show” is Rhyse’s YouTube
channel.
And his parents? His sisters? No one, no one, could love Rhyse, could care for
him, the way they do. Even at the end of a week wherein there have been gas
bubbles in the G-tube and episodes of throwing up formula all over the minivan,
hours spent in a specialist’s office that end in yet another tweak to the care
plan, and midnight visits to the emergency room - even when it feels like
there’s nothing more that could possibly go wrong, none of it can cancel out
the love shared between the five of them.
Noonans doesn’t stop them from being a family who
goes to the library and the bookstore and the zoo and the beach. A family with
a swimming pool and a trampoline in the backyard. A family who goes on hikes
and bikes rides and trips to the ice cream shop down the street.
It’s still not clear what Noonans will mean for
Rhyse long term, what he’ll be able to do or be as an adult. What is clear, however, is that Rhyse is
exactly where God meant for him to be – cradled in the bosom of a family that,
while as imperfect as every other family, is perfect for him.
Harmony Harkema is the proud aunt of Rhyse Addyson
Cole, a spunky little boy who just happens to have Noonan Syndrome. She is also
the proud mother of Rhyse’s favorite cousin, Lili. Harmony lives in the
Washington, DC area. She blogs at www.beyondtoast.com.
*******************************************************************************
Mom's (Heather) Voice:
 |
| Mom and Rhyse(PTNP11) |
When I walked into Meijer, a
mid-western mass retailer, I found myself settling my eyes on a little boy who
has a syndrome. He and his dad were walking along the fresh vegetable
aisle holding hands, and sporting smiles spread from ear to ear.
I didn't have my son with me at the time, but as I sauntered by
these words came to my mind, “I know.” I continued on past the
salty snack aisle, the baking aisle, and the ethnic food aisle and onto the
cleaning aisle to grab some toweling. But all the while I desperately wanted to
run back to that daddy and tell him, “I value your son too.” I grabbed some
toweling and made my way back to the front of the store, purposefully gazing
down each aisle momentarily to look for the boy and his dad. I never
found them. I feel I missed an opportunity to remind that dad he’s not
alone.
According to the
Merriam-Webster dictionary the second meaning of compare means “to look at (two
or more things) closely in order to see what is similar or different about them
or in order to decide which one is better.” The second definition of devalue means
“to cause (something or someone) to seem or to be less valuable or important.”
All of our lives we compare who we
are to who someone else is or what we may or may not have as compared to a
friend or a stranger —wondering how being like someone else or having what they
have might define us differently. These comparisons seem inherent to our
nature as humans, though for each of us these may be bent in different ways
according to the culture and sub-culture that we live in, as well as our
personal spiritual journeys.
Comparisons can push us to greater
success, or greater failure. Comparisons can be inane, or horrifically
self-defeating. If we could live a life without comparing I truly don’t know if
it would be better or worse!
In the beginning of our journey’s
with Noonan Syndrome I believe many of us could only see the blatant
differences in our children. And those differences were painful.
Most mommies were being wheeled out the door of their birthing center with
their little bundle in arms, overwhelmed with the impending sleep deprivation
and life changes that come with having children. But at least that is
“normal.” For many of us NICU instantly became our “normal”. Instead of
exuding joyous emotion over our new arrival, in between yawns of course, we had
to find a new way to handle both joy and pain in the same moments. We had to
learn quickly to allow strange men and women to handle, cuddle, feed and clothe
our newborns. And trust doctors we had never met. We had to learn
to fore go the expectations of a new parent, and learn to return home from the
hospital each day empty handed. It has been two and a half years since my
journey with Noonans began and the wounds that these things left can easily be
torn open from sheer memories alone. I can only look back for a short time, and
then I must move on to savor the present—to value my son for whom he is.
If I don’t value him, as a parent, for both his differences and similarities to
others I don’t know that he will be able to value himself as he becomes more
self-aware.
When others compare our
child/children to the mainstream or to other non-typical children we feel
devalued as parents, and it feels like our child/children are being devalued as
well. But if I could gather all of us parents together in one room I
think we could agree that as our love for our child grows deeper, we focus less
and less on their differences. And whether others compare our children to the
mainstream or we ourselves compare our own children to the mainstream it is fruitless,
and it can devalue everyone. As moms and dads of children who do not fit
into the “typical” category, whether the differences are physically obvious or
not, we know that comparison is less about
differences and more about commitment: commitment to love beyond the imperfections of
humanity, and to love and to value in a new and deeper way.
 |
| Maggey, Rhyse, Leah |
I wish I could say I was perfect at
commitment instead of comparison myself, or that the words of others comparing
my children just slip off me like water down a slide. But I can’t.
As of mother of an adopted daughter whose inherited skin color is a deep,
lustrous brown I face the challenge of rising emotions when she is compared to
white folk. Just this past week she came racing off the bus upset that she was
called, “dark chocolate” all the way home. My second daughter is white
and “typical” in every way and truly can’t understand why others tease her
sister—they are the best of friends. My son who not only has Noonan Syndrome
but has spectacular, orangey-red hair--for which he gets gawked at by older
ladies, just plain sticks out wherever he goes!
While we do not want to be
hypersensitive to the stares or the questions we get from strangers I will be
the first to raise my hand and admit I get tired of the “he’s so small what’s
wrong with him?” question or “your son looks tired is it nap time?” And don't
complain to me that your child won't eat his veggies! At least he eats!
Ok, see? I, too, have to take a big breath and bite my tongue on
occasion. Rarely does anyone really want to know about a syndrome, and when
I use the word, “ptosis” their own eyes glaze over! There are days where I am tired of feeding
Rhyse through a g-tube, being puked on at the most inconvenient times,
changing bed covers three times a night from med port eruptions,
perpetual sleep deprivation and a long list of diagnoses that only continues to
get longer-- I struggle with feelings of incompetence and uselessness as a
person. And in the wee, wee hours of the morning, when I can’t relax long
enough to ooze back to sleep because the sounds of Rhyse’s asthma are keeping
my nerves sharp and edgy, I desperately wish Noonans away like the whole thing
was just a hokey nightmare from too much pizza. I crave “typical.” Eventually
morning does come, and the brain fog lifts, and there it is, Noonans, still
staring back at me in face of a beautiful little boy that I could not love any
less, no matter what.
So I erroneously compare myself with that mother "out
there" who has healthy kids, who keeps a perfectly clean house, and always
gets the dry laundry out of the dryer before wrinkles set in--and I come up so
far from human. Being a mom of a child with a syndrome makes me feel different too. I
guess we all have to keep reminding ourselves not to compare! We compare
and we make assumptions; assumptions that are usually wrong. And for some
darn reason when we compare and assume we aren't thinking in the best
interest of others!
I feel I must interject an important
point here: this is from a mother’s perspective.
I am not the one who is labeled “different.” I am not
the one who has to overcome physical and emotional challenges in a world set up
for “typical” people. I grieve EVERY time I read the many accounts
of kids, written by parents of kids with Noonans,
being viciously bullied because of their small stature. I
am moved by the love of a sister when I watch Alexia Grace Hopkins singing,
"DifferentThan Everyone Else", a song she
wrote in honor of her sister who has Noonans. In a bittersweet way I
enjoy reading and rereading
Lee
Robinson’s blog regarding
his beloved brother, Connor. The paradox between resenting Connor because
of how his medical issues inherently brought so much attention as a child, and
yet the fierce love of a little brother for his big brother gets me every time.
I see how this could be playing out in my own kids’ lives. And yet there is
nothing I can do to change those dynamics. I can only love equally and
believe someday all my kids will understand.
Each time kids who have NS speak out
I listen and learn.
So as I take a deep breath and
examine my own coined phrase, “to compare is to devalue”, as a mom who has a
child with a syndrome, I challenge myself to always value him well beyond any
reason to compare him to others, and to teach my other two kids that comparing
themselves to others for any reason is futile. And most of all to help
Rhyse "catch" the understanding that being
different doesn't make him less. Not to
mention kicking myself in the pants occasionally and reminding myself of the
same thing!
Heather and Jon have three kids, Leah, Maggey and Rhyse(PTNPII). They reside in Allendale, Michigan. Jon works as a Materials Manager for an international company, and Heather is a stay at home mom--who occasionally likes to blog! Life Journey's
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DISCLAIMER:
The article above was written by a guest blogger. The opinions and ideas written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT endorse political candidates and religion or religious preferences.
This blog is provided for moral support purposes only. This blog is not a substitute in any way for medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have learned from this blog.
The Foundation does not recommend or endorse any specific tests, treatments, physicians, products, procedures, opinions or other information that may be mentioned in this blog. Reliance on any information provided by the Foundation, Foundation volunteers, staff or guest blogger/s is solely at your own risk. You should not rely on information you receive from or through the blog for any personal, medical or health decision, but should consult with a qualified professional for specific information suited to your family member’s case.
George
was born at 36 weeks, a healthy weight of 6lb 4oz’s, but he showed signs of
distress right from the beginning. Immediately
after birth George was taken to the NICU. Further tests indicated he was having
Apnoea’s and desaturations. Treatment
for those uncovered a heart murmur, and later Supravalvular Pulmonary Stenosis.
In total George was in the NICU for 11
days. 
