Wednesday, February 22, 2017

Roller Coaster

For quite some time, I've described life with Teddy as a roller coaster. There are incredible ups and then dismal downs. Sometimes those ups last weeks or months but fortunately the downs seem to be shorter. Sometimes, you hit both incredible highs and lows in the same day. Lately, without seizures in so long, it's felt like more of a level ride, but the last 24 hours were reminders that the ride continues.

Yesterday evening, my aunt who was visiting asked me if I was planning to return to the professional world or if Teddy would become my career. Her question gave me pause, if for no other reason than no one has ever phrased it like that. I was never the person who dreamed of being the stay-at-home parent. My husband and I had plenty of tear-filled discussions before we had children, heck before we were married, about how much we wanted one of us to stay home to raise our children ... and those were tear-filled conversations because I enjoyed my career and didn't want to be stuck in a house expected to do all the cooking and cleaning.

Now, reality is that work is both my chance to be an adult, escape from the realities of my life for a few hours and contribute as a productive member of society for an organization whose mission I wholeheartedly support and with peers whom I enjoy. I do most of the cooking, partially because I enjoy it and partially because I am the one home. As for cleaning, well, our house is never clean.

Last night, after that thought-provoking question, I was able to help connect another mom whose child has the same diagnosis as Teddy to get her daughter a weighted blanket to try to help with sleeping issues. Huge thanks to my brother's girlfriend who has created a stockpile of completed blankets and shells to donate to those in need. She's going to finish one and mail it to this family, which makes me so happy.

Then today I spent most of my run contemplating my arguments for Teddy's hearing next week to appeal that he receives outpatient speech therapy. That didn't put me in the right mindset when I discovered the speech buttons that Teddy uses at school cost $135, which shot the idea of us buying a couple for him to use at home down the drain.

But when I posted in a few Facebook groups asking for alternatives, I got a plethora of answers ranging from where I could possibly borrow or try different devices, recommendations on getting him evaluated for a specific device, suggestions on how to pursue different funding options for devices and a whole bunch of cheaper alternatives. My favorite comment was when I asked about the durability of one device was this reply: they hold up pretty good - been dropped on the floor, stepped on, and the dog once carried it around the house telling me "I pooped. Change my diaper." 

That pretty much sums up life with a child with special needs. A lot of randomness and potentially even a dog who thinks it needs its diaper changed. 

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