I should have known better. My first mistake was getting “comfortable”. As comfortable as anyone can when you have three special needs kids. Everyone was doing well, no major incidents for two years (*knocks on wood*). I was well-adjusted to our current status, our version of normal. Our version of perfect. Were there hiccups? Well, sure. We have two girls on the verge of tween-dom and all the drama that comes with. Drama we’d been through with the now-teen. But overall, we were good. We had things handled. IEPs in place, regularly scheduled doctors visits…in fact, we’d gone down in occurrences of those (from quarterly to every third, or half a year). During our month of hell, part of the trauma was dealing with issues with Kennedy and Denver and their new doctor’s ways that we didn’t like and his poor poor choices. Situations we are still coping with, but wish so much up in the air, we are in a holding pattern (I hate holding patterns). Then there is Molly. Several months ago we were hanging around the house. I had my hands on Molly’s shoulders, and she moved. Immediately I noticed something odd. A very pronounced clicking when she moved her shoulder. I asked her if it hurt, it didn’t. I knew it wasn’t right, but with the chaos of all the crazy around this house it got pushed to the background. Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start. So I said, “I know this isn’t your area, but could you check out this weird thing?” He checked her shoulder, had me do the same to look for a specific issue, then had her lie down and rotated it, checking everything. As she sat up, she decided to show him how she can bend her fingers in hyper-flexible ways. “Isn’t that cool?” And so, the doctor explained to me that Molly has no connective tissue in her right shoulder. When it’s rotated, it becomes dislocated and pops back in. It is bone on bone. Add in the hyper-flexibility in her joints…and he thinks we’re looking at a connective tissue disorder–one that we aren’t specifically testing for yet. First step–we must go to an orthopedic doctor for her shoulder and determine the best course of action. She’s to stop goofing around with it (she finds it a neat trick), and take it easy on it, even though it doesn’t hurt. As for the connective tissue disorder (he did not specify which as of yet)…it’s a wait and see. Deal with her shoulder first, watch for other symptoms (migraines, heart palpitations). We are once again in the “hurry up and wait” world. I hate being here. With a white hot passion. I was definitely stupid to get comfortable. I know better. Read more »
2014 – Disney, Universal, Make-A-Wish…My dear sweet Molly. Oh, how she loved so much about the parks. The princesses, the speedway (because she can drive!), the ice cream (because, DUH). Just about everything was just AWESOME. There was one thing that held her back. One thing that kept her sitting on the sidelines about 50-75% of the time. She was afraid. Of the rides. Of the roller coasters. Of anything that left the ground in any fashion. Lucky for her, her brother wasn’t too keen on the rides either. They sat out most of the rides. Fast forward one year. 2015. The year started out much like the year before. Molly holding back. Then something changed. Something small. She noticed the Barnstormer. She was afraid, but jealous of us going on all these rides and coming off super excited. And so she took a chance. She rode the ride. And came off exhilarated. She wouldn’t ride one that went upside down, but she went on every roller coaster from that point on. We went on the Barnstormer three times. She even, on the last night, went on Space Mountain. It terrified her, but she ended up loving it. Little by little she went from Molly the Meek to Molly the Daredevil(ish). It was so much fun watching her emerge from that little ball of fear into eagerness. She admitted after our last roller coaster (Space Mountain), that every ride scared her, but that was half the fun. Molly stepping out of her comfort zone is a huge deal. So thank you, Disney. Universal. For bringing out the daredevil in this one. It’s awesome. You’re awesome. Read more »
by Sarah CassMulti-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.
For almost two years I thought we’d lost him. He never talked to us, he didn’t care about anything but the (now long gone from his life) girlfriend. Back then he wanted to be a doctor. Now that dream has been put aside for another, but that’s another post for another time. Because two days ago this kid came to me with a question. He asked if there was a way to raise money, because he wanted to do something with his spring break. He didn’t want to go on vacation with his friends, or go party somewhere. He wants to volunteer at Give Kids the World Village, the magical, wondrous place that provides a second home to kids receiving wishes for Disney World. Together we are working on finding a way to make this happen. I don’t know where this kid came from, or rather how we found him again. However, it seems my thoughtful, generous boy has returned into our lives. I can’t tell you how many times I heard “One day it’ll just click and his head will be screwed on right again.” I honestly never believed it would happen, but it seems to have come true. So welcome home, son. I hope we can find a way to send you away (for spring break). Read more »