When I was younger, we used to travel to a theme park in Cincinnati called King’s Island. I would love riding “The Beast”, with its dips, spins, twists and turns. My favorite part was the slow anticipation riding up to the top of the giant hill, peeking over the top and then whooshing down a steep decline. I loved the way my stomach would flip and the thrill of the adrenaline rush. Ever since Elena’s injury, our lives feel like we are on a perpetual ride of “The Beast”.
At the moment, we are racing down. It feels like everything is going awry. There is so much stress and frustration. I know it’s bound to come back up again, but…man, when it drops, it DROPS.
Before my Mom reads this and starts incessantly worrying, Mom…we’re doing fine. Despite my dramatics, we know as a long as we hang on tight to each other, even close our eyes just a little, the dip lasts only a little bit before we start rising back up. It’s just that these dips are sooooooooo hard….mentally, emotionally and even physically.
Elena has practically ceased eating via her mouth. We were cruising just a couple weeks ago. I mean really cruising. She was loving it. I was loving it. We were pumped to even begin thinking about weaning back a few G-tube feeds. Dip. We have no idea why she just isn’t interested anymore. It is no doubt one of the most frustrating things we’ve experienced. We got a whiff of what it would be like to see her eat, then POOF…gone. We’re back to saying “bite” a hundred times before we eventually have to weasel our way in to her pursed lips.
She’s had a few doctor appointments lately that have been neither encouraging nor discouraging. I’m so over when doctors just tell us to “wait and see”. I want action. I want to know what I can be doing to help my little baby. There’s no way I’m going to wait it out. When a doctor tells me that, I just want to stick my tongue out at them. This is reason number 1,237,548 why I hate going to doctor appointments. And we still have TWO left this month.
I secretly worry most days about what areas we’re seeing improvement on and which ones we’re not. The other day, I worried out loud to Chad about Elena still not really using her arms/hands. To my dismay, he worried right back. Again, we don’t really know why (just wait and see!) but I’m so desperate for her to make some serious progress in this area.
Elena got a set of wheels this week. No, Chad didn’t buy her a car (though he probably would if she asked). She got her first “wheelchair”. Gulp. If I were totally honest, I would admit that a little part of my heart broke the first time I saw her in it. I know it is what she needs to be supported and promote good positioning for play and for eating. But it just looks so scary. It’s something no parent should ever have to see their baby in. I hate that it is going to make Elena stand out as being different. I dread taking it out because I already anticipate the stares and the sympathetic looks we’ll probably get from other parents. I know we’ll adjust and I’ll be happy to stare right back at any silly person who dares me. It’s just another little dip before we come back up again.
There’s just SO much going on right now. In addition to Elena’s needs, we are dealing with other normal issues many families face. I know God is in control and we can’t always be riding high. Spring is around the corner. We’ve had lots of good things happen with Elena (the last couple weeks notwithstanding) over the last couple months. We count our blessings and continue to be thankful every day.
I’m just ready to get off “The Beast” for a little while.
Do you think God would understand what I mean if I ask him for that? 🙂