After receiving the results of Ashlynn’s head ultrasound at
2 weeks old, Chris and I knew there was a possibility of a Cerebral Palsy diagnosis. Of course we did what any parent does when we
want more info… headed straight to Google to research PVL. It was only a matter
of minutes before we picked up on the statistically significant correlation
between the two.
Ashlynn never looked or moved differently to our untrained
eyes in the beginning. She moved both of her arms and both of her legs… a lot. She
followed our faces when we spoke to her. She even started babbling and cooing much
earlier than our first. If it wasn’t for the fact that we saw her MRI results
with our own eyes, we might have never suspected anything was wrong!
We would come to understand it wasn’t so much that she wasn’t
moving her arms and legs- but rather, how
she was moving them.
****
The day was finally upon us. The “wait-and- see” day. Ashlynn’s 6-months follow-up. I remember in the months prior, I had been
able to calm my anxious mind by saying “Let’s take this day by day. There’s no sense in worrying right now! Six months is a long time away. Anything is possible!” (All the while Chris and I would pray for her
miracle; pray that the doctors would say that they no longer saw any sign of
the brain damage). Fastest 6 months of
my life. It was actually Valentine’s
Day. I had always loved that day growing up. It reminded me of my February
birthday. It also reminded me of the beautifully-wrapped gifts my mom and dad
would have waiting for us on that day when we got home from school. I loved
everything about that day- the pink and red, the hearts everywhere. I always
made it a point to do something fun on that day. But this year, Valentine’s Day
was different. Very different.
We woke up extremely early that day. We were scheduled to
meet with her original Physical Therapist from the hospital that had worked
with her in the NICU. She had done the initial assessment and it was customary
to do a follow-up visit 6 months later to check her progress. This appointment would help set the long –term
course of action. I knew it was a big
day. I dressed her super cute in a white
onesie with tiny bright pink hearts and the biggest pink bow I could find. She looked like a little baby doll. As if “how cute she looked” might positively skew
her results. I barely slept the night
before. I was a nervous wreck. I knew
that this would be a very important day for her, and for us. When I woke up, I felt like I was taking my
board exam all over again. I was full of
anxiety, worry… but also, strangely enough, full of excitement. Excitement that we would at least have some
sort of direction; some answers about what definitively lied ahead. I was pretty much all over the place when it
came to my emotions. I thought about all
the possible outcomes the whole week leading up to this day. Actually that’s a lie. I thought about all the possible outcomes
every single day since we received the news of her MRI results 6 months prior.
I went to dark places, to happy places. To places of mild disability and all
the way to severe motor difficulties. I even visited the place of complete
healing.
We pretty much drove in complete silence the whole way. Except for the small talk one of us would try
to force out. My mind was racing a mile
a minute. I took refuge in the confidence
I had in our beautiful Ashlynn and her abilities. I also knew that no matter what news we received,
God had our plan and our journey already written for us. It was now time to see
what our path would look like.
The evaluation seemed to have gone well, I thought. They
laid her on a brightly colored mat on the floor and watched her move naturally.
She kicked, and squirmed, and smiled.
They did this for about 20 minutes while they videotaped her. They did a few more motor skills tests before
they discussed her results for the day. I
feel like any time you get news you don’t like, it comes in slow motion. Our PT would go on to explain that Ashlynn
lacked “fidgety” movements. Those are
movements that typical babies do organically.
When a baby of Ashlynn’s age demonstrates a lack of these movements, 2
out of 3 times this will be predictive of a “motor difficulty.” That’s a fancy, non-committal way of
indicating a very likely Cerebral Palsy diagnosis. She told us that she was not able to give an
official diagnosis, but she wanted to introduce us to a developmental pediatrician
for further evaluation a week later. My
heart sank. And once again, the breath
was taken right from out of my chest. I
knew what that meant. I knew why. I knew
what was coming next. Exactly what I had
prayed for to not happen was playing
out right before my eyes.
My prayers changed that night. I prayed for understanding. I prayed for comfort. I prayed for strength.
That Valentine’s night was hard. I felt defeated. I felt exhausted. The celebration I had hopped for didn’t
happen. With morale down, we settled for
an easy dinner and took our son to a
McDonald’s PlayPlace and we sat in silence as we watched him run. Jump. Skip. Hop…
all things kids should be able to do.
***
A Mom has a heart of steel when it comes to her babies. She would go to war for them. She would jump in harm’s way to protect them. She would give up all her abilities to walk,
run, dance… ever again… just to make sure her babies could do so instead.
That week leading up to our next appointment, I said “enough
of me being sad.” It was time to go to
battle. It was time to accept what was
in front of us and give it all we had. We had received blow after blow, time after
time. We have felt real pain; gut-wrenching
pain that only a parent who has received “a diagnosis” for their child knows. That saying about how “when life gets too
tough to stand… kneel” has never had a more true meaning. I wasn’t on my knees out of weakness, but
rather I was there still giving thanks to God for helping me get back up each
and every single time.
THE day finally arrived. It had been a long time coming. We were ready.
The room was filled with 4 PT professionals and our new
developmental doctor. They laid her on the mat and began. I have never been more proud of my baby girl
than I was on that day. She literally
gave it her all. She was “Perfectly
Ashlynn.” She did the very best I knew
she could. She didn’t cry or fuss. She bravely
went from task to task. I smiled
watching her with tremendous pride. But,
I also knew why we were there. The
evaluation came to an end. It was time.
He started off by telling us all the things he loved about
her. He was kind and gentle in his delivery. Her awareness, her eye contact, her ability to interact socially and her
smiles… and then it came. “What I believe we are dealing with is cerebral
palsy. I am going to go ahead and
diagnose her with that.” There was much
more said after that, but I don’t really recall it. After he was done talking, I let out a breath
and I calmly said, “OK.” And with that all the weight I had been carrying for
the last 6 months was lifted. The fear of getting a diagnosis no longer had
power over me. That name no longer had power over me. It was here and I had accepted it. I didn’t cry. I didn’t scream or fall on the
ground like I thought I would. I was ready. Every situation, every heart break, and every
experience I have lived up to this point had prepared me for that very moment.
As I held Ashlynn during the rest of the conversation that
followed, she looked up at me, and I down at her. She gave me the sweetest smile, and as our eyes locked for that
moment I thought – “You’re absolutely right, baby girl… we’ve got this.”
Comments
Post a Comment