I have had something on my mind. And I have been thinking about it. A lot. And it's one of those things that you debate opening your mouth about because of the criticism that could follow. But a series of events has me getting it off of my chest.
When Ben and I learned of Allyn's diagnosis of Early Onset Scoliosis we were just as uninformed as the general public. We both know what scoliosis is. I have it; my sister has it. But we just didn't know the degree to which EOS (or infant scoliosis) is so drastically different from the type you typically see in adolescents. The mechanics are the same. Something (or nothing) causes the spine to start not growing straight. Growth is the force that drives the curve.
So how could it be so different? Well, Allyn is little. Tiny. She has years and years and years of growth. Most of her growth is in her trunk right now. That growth is exactly what causes her curve to get worse. So we have over a decade of working on getting and keeping her spine straight. And not just a little growth to battle and harness, but a monstrous amount of growth as compared to an adolescent who is growing more in her limbs than torso. And we need the time. Because surgery might be on her plate, but we can't do surgery now. She is too little. There are rods, but those require annual lengthening surgeries. So the sooner you have that done, the more surgeries you have. Fusion is not even an option until she is older because it could so negatively impact her lung and heart function. And these are the things that stress me out. Because I pray every day that we are making the right decision in casting her. Casting may heal her completely. But at a minimum, it is buying us time so that her curve can't progress until she can ultimately have surgery.
And my worry doesn't stop there. She is a beautiful little girl. (At least her momma thinks so.) And I every day it weighs on me that this is also a physical thing. And kids will judge her and parents will stare. And, oh my goodness, what if boys don't like her or don't think she is pretty. Because super awkward teenage Shelley knows EXACTLY what that feels like. And that pain still sometimes tears at my heart and rears its ugly head in how I uphold myself and where I place my priorities. And yes, it's vain. But it is real. We are created in His image. But we hold beauty in such high regard in society. And I worry if Allyn has a curve or a brace or a scar down her back, will that leave her broken. I pray that it doesn't.
And then sometimes I just want to LOSE IT when people go on and on and get worried about their child going under general anesthesia for 30 minutes...one time. Allyn is put under every 9 weeks. And she is one of the luckier ones. Her 'surgery' is fast and she isn't out for long. There are children that are under general anesthesia for HOURS. These kids are having eight hour surgeries and often it is one in series. I just don't even think about the being put under any more. I tell myself, the doctors are trained and skilled and they do this every day. And nothing but the will of God could change what will be. But those poor parents that have to wait all day to see their baby after surgery...that is heartbreaking. (This is the part I just worry about rubbing so many people the wrong way).
And so if you tell me about your cousin that wore a brace when she was a teenager. Or some famous athlete had Herrington Rod surgery at 17 years old and I just give you a pleasant smile, thank you for letting me know that you are thinking about my baby and thank you for trying to ease my fears. I'm trying to not let this process turn me into a bitter momma. And these are 100% my issues and hangups. I know this. But maybe airing them out for a bit will help.
This picture was taken at the Arkansas Children's Hospital Foundation Color of Hope Gala. We also go to ACH to deal with some of Allyn's other issues. I just wished they would have picked a color other than orange. I mean, seriously, how many more times will I wear that orange dress? But if Ben asks, I'm definitely wearing it at least three more times. :-)
And if you want to help a family struggling with this same horrible disease, you can donate money to the Real Superhero Project, ISOP or The Lucky Cast Club or Shriner's Hospitals for Children.
(And I promise I will make my next post light-hearted and happy!)