The Arrival of Our “Wait-and-See” Day

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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”, which was the only diagnosis we were given at that time. 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.  We had spent 35 days in the NICU. I remember in those 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.

pinkheart (1)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.”

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