The Arrival of Our “Wait-and-See” Day

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.

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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.

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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 innocently play not having a clue about how our lives were about to change.

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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 go to great lengths to let them know how, no matter what- they are perfect in every way.

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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A New Beginning

A New Beginning

It’s been quite a journey these past couple of years- one that I would like to share…not because I have it all figured out – not even close, but more so, if me talking about our journey helps just one person- even if it’s myself, then it’s all worth it! I guess I will start from the beginning.

Our lives are full of choices, thousands of them from the time we wake up, to the time we go to sleep, and then we do it all over again the next day.  For the most part I would say that I am someone who chooses to look at the bright side of things. I choose to be happy. I choose to celebrate life and all it’s beautiful chaos. I may take the long route sometimes, but eventually I end up there. I believe happiness is a choice…and we all have that option. But what happens when things in our lives are chosen for us? BIG things. Things that will be with us forever. What happens when God chooses you for things you didn’t ask for?

People tell you kids are hard. It’s no secret. They may even share their stories of public tantrums, sleep regression, and of course the pleasures of a teething child. But what about the really hard stuff? The stuff that can take your breath away. The stuff that makes you question all you know about God and your faith…

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As I came to the close of my reign as Mrs. Illinois 2016 we received amazing news that I was pregnant with our second baby! We had been trying for a little bit, so the news made us ecstatic!! Almost instantly I began to get sick. Really sick. This wasn’t anything new for me though, I had morning sickness pretty bad with our first child, so I just tried to stay focused on the fact we were having another baby and push on past the hard part! After all, I had a two year old to take care of!

At around 8 weeks of our pregnancy my husband and I decided to attend a weekend retreat up in Wisconsin for our church. I was able to pull it together for the most part, but it was so hard! Smells, car motion, foods – pretty much everything made me so unbelievably sick. I remember with my first, my mom told me that morning sickness was a good sign that the baby was growing stronger. So I carried that thought with me to help get though the very long days. At this point I envisioned my little one having the strength of Mighty Mouse!

The retreat came to an end and I had made it! But we had  a really long drive home…4 hours! I made it the whole way without having to pull over- I was so proud of myself! This was definitely not the norm for me at this point. With just a little over an hour to go, I decided to take a nap to pass the time. I must have just begun to doze off when I woke up with terrible stomach cramps. I could barely sit up. I knew something wasn’t right. Chris wanted to stop so I could run into the bathroom, but we were only a few minutes from home at this point so I decided to hold off. When we got home I ran up stairs to the bathroom. The pain was almost unbearable. I will never forget the feeling I had when I saw. It was like my heart fell out of my chest. I was numb. There was so much blood. I was absolutely horrified. In a panic I opened the door, and screamed for Chris in tears- he came running to me and we just stared at each other in silence. My mom who happened to be there watching my son, urged us to get to the ER asap, but I knew that much blood could only mean one terrible thing.

We sat in the ER waiting room for hours. It was awful. Why wasn’t anyone helping me?? Didn’t they know how scary this was?? I remember looking around the room, watching all the people go about their business and realizing the world does not stop for our tragedies. What was happening to us was going on without anyone even noticing. Or anyone caring for that matter. I felt so completely helpless. I felt like I was in a slow motion dream. We sat. And prayed. And sat. And prayed. We were joined by two of our friends from church in the busy waiting room. My first reaction was to tell them not to come. To leave me to feel my pain and sadness in my own little corner.

You see up to this point, I had tried to do things all on my own. Fight my battles alone, in the privacy of my own despair. What would people think if they saw me this sad, this weak, this vulnerable??

Sometimes things happen that make you realize you can’t do it on your own. You’re not supposed to. You need God and you need the support of others. This was one of those times… with many more in our future to follow.

Eventually, after some tests and hours more of waiting, we were sent home with a single piece of paper that had instructions with what to look for during a miscarriage. We were told there was nothing they could do for us and to follow up with my doctors “after I pass.”

I don’t think I believed them or anything they said. Maybe I was in denial this was happening to us, or maybe it was my God-given mommy intuition. One thing we did know for certain from the ultra sound taken in the ER was that our little peanut DID have a heart beat.

To us, that meant we still had hope. Very high hopes. We also knew that we served a very faithful God. For the first time in my life I truly realized all of our plans were now in His hands.

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