This girl!

This girl!

Thursday, October 27, 2016

Finding peace in a world full of "what ifs?"

Lots of things have happened since my last post way back in May. At that time Sophia's seizures were really bad and we were running out of medicines to try. We decided to go ahead and get the VNS implant in hopes that it will control the seizures and hopefully stop some of the medications and their side effects. The VNS couldn't be turned on right away and when it was on the doctor turned it up very slowing making sure that Sophia was able to tolerate the feeling in her throat.
 It has been five months since her surgery and I'm happy to report that getting the VNS implant has worked great! Sophia is down to only two medications and she is as happy as always. She is not seizure free as we knew the implant was not a cure, but it has definitely giving my girl some well deserved quality to her life and ours. 

This past year was really hard on all of us. Of course it was hard on Sophia since she is the one who couldn't catch a break but it was also very hard on Eric and me. It was also really hard on my mom who was here helping me when I needed it the most which I am so grateful for. The seizures took a toll on Sophia and all the progress she had made in the last couple of years, the set back is big and although she is slowly getting her strength back I can see some areas where she is going a little backwards and... well, that sucks! During Sophia's first few years I always pride myself in focusing on her abilities instead of her disabilities but this year I've had a really hard time with it. I've found myself wondering about a lot of "what ifs": what if she could walk?", "what if she didn't have a syndrome?", "what if she didn't have epilepsy?", "what if she could sleep through the night?", "what if Sophia could have sleep overs?", "what if... we were typical?". And every time I would stop and get mad at myself for feeling that way, then I'd feel sad and angry that this was the hand that was dealt to us. It was becoming a vicious cycle that I needed to end. 
The truth is this is the hand we were dealt and I can't change that but I can change how I feel about it, at least most of the time. All those "what ifs" are not really a possibility so there's not much sense on wasting all my energy on feeling sorry for myself. Now, I'm not saying I won't ever wonder what if this and that, I'm just going to try to go there as seldom as possible and when I do I'll do my best to forgive myself and go back to enjoy the life I get to live. 
Sophia is doing great, her seizures are mostly under control and she is walking with her walker again, she is playing with her toys and she is back to be the curious girl we all know. She is laughing out loud a lot again and she is enjoying the things she used to before the seizures took over. She is going to school all five days of almost every week and I get great observations from her teacher every single day. I want to choose  to forget about the "what ifs?" and concentrate on the "she is" and "she can", for Sophia... for us.