, our world changed forever. His short life changed many worlds, not just his mama's and his daddy's. I think Neil is right about Ollie being too much for one vessel.
On Oliver's birthday, I want to share with you a post from a mother who's world was changed when her daughter, Getty, was born. Kate recently wrote about the one year anniversary of their "d-day" or diagnosis day. What she wrote really resonated with me and I hope it will with you, too.
30 Jul 2011
From Kate:
I have had an entire year to think about this day, the anniversary of Getty’s diagnosis.
I remember what we were doing that day before her 4 month check-up at
noon. I remember what I was wearing, I remember packing the small
diaper bag, I remember the weather outside, I remember everything.
I remember the pediatrician appointment being rather routine. I
remember the nice discussion we were having with our doctor about Getty.
I can’t stress how routine it was. And in a moment right before we
left, the doctor made one more quick check on how Getty was bearing
weight on her legs and the entire game changed. She did another test
with her reflexes and then another to look into her mouth to see the
movement of her tongue, all the while Mark and I just sat back as
parents not thinking anything was wrong. Then for some reason I started
to look at our doctors facial expression. She started to have this
really intense look on her face and then it seemed to turn to concern.
In a way I was trying to ignore her because in my mind nothing could be
wrong with Getty. We hadn’t noticed anything wrong so how could she find
something we were not already privy to.
She finished her exam and sat back down in her chair. She paused and
then told us that she was concerned. “I don’t want to tell you what I
think it is, because you both will go home and google it. I hope I am
totally wrong and you get mad at me later for adding such stress to the
situation, but I am going to make an appointment with a neurologist to
have Getty seen today.”
As I write this, those emotions just come back in a wave of
terrifying proportions. We left the room, Getty snug in her car seat and
we made the trip home only to wait for the next appointment. I laid
Getty down in our bed and we just snuggled together. I could not
restrain myself, I cried and cried and cried. I didn’t know what I was
crying about really, just the notion that something wasn’t right was
terrifying me. Getty looked like a normal 4 month old child. What on
earth could it be? I stopped thinking and concentrated on her sweet
little face and I just started talking to her. I started to bargain with
her, like she in some way had the power to change the outcome of this
situation. I told her that she couldn’t leave me. I begged her not to
leave me. Her sweet blue eyes just looked back at me with such comfort. I
held her for hours until it was time to go to the next appointment. 4
o’ clock came and we were sitting in another doctor room. The
neurologist came in and did similar tests as our pediatrician had done.
He sat back in his chair as our pediatrician had done and then he told
us what he thought. Before he spoke though I can only imagine what was
going on in his head. How do you phrase a sentence like this so a family
understands but in the same breath is manageable to digest? He did
pause for some time and I remember thinking to myself that he doesn’t
think we could handle that maybe Getty won’t be able to walk? “Does he
think we are shallow enough to not handle news like that, bring it doc!”
I was already getting defensive and I had no idea what he was going to
say.
“Getty has Spinal Muscular Atrophy. It is a
genetic
progressive disease that targets the muscles. I believe she has type I
which means it is the most aggressive.” The room was silent. No crying,
no screaming, no nothing, we were in complete shock. The only thing that
I was able to muster up was, “how long do we have?” His quiet voice
responded with, “1-2 years on average.” More staring and more silence
continued, all the while Getty was laying on the bed gurgling sweet coos
to us.
He offered the same consolation, “I hope I am wrong, and I hope you call me later and yell at me for being so wrong.”
I was never able to make that call because he was right, Getty had
SMA and Mark and I had given it to her because we were carriers. We
unknowingly
gave Getty a terminal disease. We gave Getty a disease that will
continue to weaken her body. We gave her a disease that will compromise
her swallowing. We gave Getty a disease that will compromise her
breathing. We gave Getty a disease that currently has no viable
treatment or cure. We did this!
So now what on earth does a family do? How on earth does one digest this kind of news? How on earth do you move on with life?
Well I guess the answer is, you just do and that is what we did. You
get through one day, the next might not be so great, but the next day
might.
Our lives will never be the same since July 30th, 2010.
I wrote soon after her diagnosis a phrase that I like to reflect on
from time to time. “What can I say, life as we know it has changed
forever. For better or for worse, we will stand together. I am honored
to be mommy to the best little girl in the world. Miss Getty we love
you!”
This helps me get through some very difficult days. But that is what
we are doing, standing together through good and bad. No day is similar
to another, there is no security that tomorrow will be here, so we just
live everyday like it is seriously our last. It is although, no longer
doom and gloom. In fact I would argue that I have never lived life with
such fulfillment as I do now as a mother and as a human being. I would
have obviously wanted a different outcome, but now I wonder if that
would have been possible without one? I am still searching internally
with that answer, perhaps I will never know.
What I know for sure is that the love I have for Getty is a love I
never thought I was capable of. She makes my soul whole. She has the
ability to comfort with the most gentle coos and touches. She is so
thoughtful and such a strong-willed little girl. I am so in awe of her
power and zest for life. How can such a little being be so wise and
teach her parents such life lessons at such a young age? I thank her
every day for choosing me as her mommy. I am so lucky.
I hope for those reading this post take in to account a couple of
things. SMA does not care who you are. It doesn’t care if you decorated
your nursery with cute bedding and beautiful furniture. It doesn’t care
if you had dreams of your child one day following in your footsteps and
kicking around the soccer ball. It doesn’t care if you were
subconsciously dreaming about future milestones; high school, college,
wedding. All it does is take. 1 in 40 are carriers. That is over 10
million people alone in the United Sates. SMA can certainly be anyone’s
reality. A simple carrier blood test can give you the knowledge you need
to make the best decision possible for your family. It is seriously as
simple as a blood test. Most doctors don’t even know what SMA is so you
can’t assume they will offer this test to you, you need to ask, even if
there is no family history. There usually never is.
Having said that I believe it is a choice to allow SMA to defeat you.
I am in constant battle with our SMA monster that lives in our home. He
is here and lives among us, but he does NOT define Getty in any way
shape or form. Getty is, Getty. She is a robust little lady who loves
life. Perhaps it is not the path I would have wanted for Getty, but it
is what is, and we fight everyday for her. We believe that there is hope
for her life and for other children with SMA. You have to hope. We
believe we will see a treatment and/or cure in her lifetime. We believe
that SMA will become more mainstream and lose its “orphan disease”
title. There is nothing “orphan” about the #1 genetic killer of young
children. Whomever designated SMA with that title certainly got their
facts wrong and has done a huge disservice to this disease. Orphan, to
me, implies insignificant and there is nothing insignificant about SMA.
On the eve of National SMA Awareness Month, I want to thank everyone
that has helped spread the word about SMA. Whether you have received a
Tell 5! package or you have learned from SMA by reading our blog or
other great SMA non-profits and families around the US, I think it would
be safe to say that we all thank you.
No family should EVER be given the diagnosis of SMA. No family should
be given the dire statistics of 1-2 years of life expectancy. No child
should have to have their respiratory compromised due to a degeneration
of muscles. We need to keep fighting for awareness and we need to keep
fighting for a cure. Getty and her friends deserve nothing less. That is
why we fight so hard. I want to see Getty attend high school, I want
her to graduate from college, I want her to get married, I want her to
have a full life and an extended one full of experiences. Getty deserves
that.
Getty said “dada” the other day and Mark and I were over the moon.
Will more words follow? We have no idea, but we are so thankful for
“dada.”
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