Over the course of this blog, I have spent significant time noting how Adelaide is different, commenting on what she is not able to do and the dreams I mourn that I once had for her. I could easily write a post about our last year in review, which would inevitably make me acknowledge all of the skills she’s lost and trials she’s faced. Honestly, that sounds fairly miserable. So, instead, I would like to take a moment to focus on all the amazing things that Adelaide is still able to do. The secret ways she communicates with us and all of the wonderful qualities that make Miss A the strongest person I know. She truly is a wonder woman.
The sheer perseverance this child demonstrates is insane. It may appear so simple to anyone watching her, but sucking her thumb is serious work. The coordination just to get her thumb into her mouth can take a full minute, then there is the muscle work required to suck. After a while, you can see that her arm gets tired from being in that upright position and she will somehow manage to bring her other hand up to hold it in place. All of this takes an insane amount of effort from her brain to direct her muscles and for her low tone muscles to respond. But she does it, because she wants to and Adelaide is a determined little thing and will fight to get what she wants.
Speaking of which, she has super powers… I’m only sort of joking. While Adelaide is obsessed with that right thumb, it is not always the best thing for her. The additional secretions produced can be challenging for her to manage and she starts to gag and choke. When this happens we have to put an immobilizer on her arm so that she is unable to get her thumb to her mouth. It doesn’t matter how tight I have put it on, she has found ways to get out of it. I will put her to bed at night with the immobilizer on and will run into her room later when I hear her oxygen alarm going off, only to find that she has escaped the immobilizer, her thumb is in her mouth and she has managed to dislodge her nasal cannula from her nose. How the heck does she do it?! This feisty little lady has learned that if she rubs her arm against her bed enough times that she can make the immobilizer slip down and eventually slide off. Or is it straight up super powers? Either way, I don’t recommend coming between Adelaide and her right thumb. It clearly must taste like chocolate, or whipped cream, or margaritas.
To that end, I often speak of her low tone which means that her muscles are just generally loose - but do not confuse this with weakness. When she wants to she can put on quite the performance in therapy, holding her head up, pushing through her hands and even her feet. She doesn’t like to show off every time, but she CAN do it, and there are few things that make me happier to see. Then there are the times when we have to physically remove her thumb from her mouth or turn her head away from her preferred right side. The child has super human strength that you would not expect in her often limp looking body. It takes two grown adults to position her appropriately for an x-ray. This little ladybug is not messing around.
She is also quite the trickster: she will be chillin with her eyes open, looking around, sucking her thumb and then the moment she senses a doctor in the room she pretends to be asleep. Full on opossum mode. She may or may not also use this tactic when she hears her brother’s voice - he has a tendency to love her HARD in a ‘please don’t smother your sister” kind-of-way. But if her hiding tactics don’t work she moves on to wiggling and has even been known to resort to physical violence:
“Mommy, Adelaide hit me!” “She didn’t mean to, Jackson” But she probably did and truthfully, atta girl :)
I’ve left the most obvious for last, which is of course what she endures and pushes through in her daily life. My little Adelaideybug, and all the other kiddos out there like her, are straight up super heroes. From seizures to endless tests, infusions and surgeries, illnesses and lack of bodily control, this little lady pushes on. Make no mistake, she could have given up. She has had multiple opportunities to let us know that she is tired and has had enough with this life. Which tells me, she wouldn’t be with us today if she didn’t mean to be. Adelaide is alive because she has a degree of fortitude that I have never seen in another human being in my life. She is my little warrior fighting a battle beyond my comprehension AND she does it with flair. Do not underestimate this little ladybug. She will leave her impact on the world, not in any way I could have imagined, but she will and she is. As Wonder Woman says, “Hera, give me strength”, because I’m going to need it in order to keep up with Miss Adelaide Grace.
“Go in peace my daughter. And know that in a world of ordinary mortals, you are a Wonder Woman.” Queen Hippolyte in Wonder Woman TV show, Season 1, Episode 1, 1975
P.S. I’ll be taking next week off from the blog. I have VERY important plans to cuddle my children, commit major gluttony and, of course, do marathon day-after-Christmas shopping. So Merry Christmas to those who celebrate and see you all in 2019!