December 2, 2018 A Pleasant Sunday

Have you ever had such a good day that you feel it necessary to literally say it out loud multiple times? Have you ever said, “Today was a good day!” and actually meant it?

That happened to me today.

My cousin, Robin, and her family came to visit for a good chunk of the day. Robin is more like a sister to me than a cousin and has been there for me in more ways than one through this entire ordeal. I truly don’t know what I would have done without her help and support.

We did not tell Annadelle that Robin, Anthony, Maddie and brother Hayden were coming. We wanted it to be a surprise and use her curiosity of who her visitors were as motivation for participating in therapy. While we didn’t have therapy today, we still made her do a lot of work on her own, such as help getting dressed or “walking” to the wheelchair. When it was time to go see her visitors, we got on the elevator to head to the visitor’s desk and I told Chris, “Uh oh. We forgot a mask for Maddie.” Annadelle quickly picked up on the name and shouted, “Maddie’s coming!?” I really suck at keeping secrets.

During their stay, we ventured outside and even grabbed some Waffle House. We saw Santa for a few minutes, too. After they left, a Christmas parade came by in front of the hospital and Annadelle was able to get a good bit of candy and a stuffed animal.

Robin has not seen Annadelle in person since she visited us in Mobile very early on. I think it was the second or third week in the hospital when she last saw Annadelle and she has made significant improvements since that time. But when we discussed my Facebook and blog updates, Robin pointed out that I only include the “good points” of Annadelle’s recovery, making it appear that Annadelle is much better than she actually is.

I want to clarify this for anyone who cares to know. Annadelle is most certainly better than she was, but she is nowhere near what she once was. First, she cannot walk at all. She can’t even stand up on her own and we have just now gotten her to where she can somewhat bear weight on her legs. Her noodle-like legs can get to a point where she can lock them at the knee to help stand, but without maximum assistance she is not able to do much for herself.

She can’t hold a cup with 12 ounces of liquid. She can’t lay herself down or sit herself up on her own. She can’t brush her hair or put her socks and shoes on. She can’t crawl or even roll over without help. She can’t do 90% of what she once could.

I have spent hours reading over posts and comments from a Facebook group I joined for parents of kids with AFM. Seeing as to how there are only around 430 kids diagnosed with AFM ever, the group is relatively small. Parents each ask for advice and share stories of interviews they have done in an attempt to raise awareness about AFM, and more importantly to encourage the CDC to find a cause and a cure for what is essentially the new polio virus.

One mother whose son is close in age to Annadelle has been making some slow progress with therapy. She shared her worry of her son not regaining mobility and her emotional struggle with his diagnosis with the group on the exact day I was feeling overwhelmed with worry that Annadelle would not return to “normal”. I was surprised at how many parents whose children were diagnosed between 2014-2016 are still regaining mobility and ensured the original poster (and subsequently myself) that recovery from this disease is measured day by day over long periods of time. The recovery is like running a marathon, but my brain is running a 5k.

Realizing the recovery is slow and agonizing, I have learned to appreciate the little things I always took for granted. Snuggles with my baby girl are so much more meaningful now. I spend much less time on my phone. I’m more patient. I try to understand “the other side” and am more sympathetic than I once was. I literally stop to smell the roses.

Today, with Robin and family, I simply enjoyed the company. A chance to go outside. Conversation. Warm weather. Everything I missed out on before. I just hate that it took something so awful happening to my child for me to see what was truly important in life.

I hope if you are reading this post, you take a second to thank God for your many blessings (because, believe me, they are plenty even if you don’t see them). Take the time to appreciate the little things. Because one day those things will be big things, and they will be gone.

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