I love this space of mine. It has been such a release for me in the past to let my feelings out.
I never quite knew why I needed to write.
But it was to find our little genetically challenged TELO2/YHFS families.
I didn't know that when I began this blog 10 years ago. I just knew I needed to get ourselves out there in hopes that maybe one day we'd find other families similar to ours. At first (and still), I made so many friends with other special needs families and learned so much from them. But still needed to keep looking. I never wanted to give up that chance to find an answer for David....and for my family. Even when I was at the bottom of the genetics pit with no way out because once you're given full genome sequencing and you get no answers......that was basically it.
It took one miraculous year to find the gene that was eluding us. Two doctors who worked so hard for a family out east to find an answer for their three kids who were all displaying very obvious genetic issues. David's amazing genetics dr, who never gave up on us and worked for 14 years with us to keep trying to find an answer. And one phone call to tell me that when they reran that genome sequencing test for a "reanalysis" they found our answer.
It took Michael linking my blog to a website search for TELO2 or You-Hoover-Fong Syndrome and me hashtagging TELO2 and You-Hoover-Fong all over the internet. I finally had families start contacting me. I finally took it upon myself to create a group on Facebook for support. We are still SO small, but our kids are SO mighty that I don't even care that we will never have a "cure" for this silly mutation. But we've found a true group who completely understands and can offer empathy and support in our posts.
But living your life out loud in a glass house you built for yourself is a double edged sword. You start to try to live in everyone else's expectations. I share A LOT of information. But I didn't share was that having a special needs kiddo is hard on a lot of marriages and those fail due to lack of care with one another. It's nothing to be embarrassed about. But yet I was......because I tended to make it look easy on the outside. I have learned from my mistakes. And I'm moving forward and so is Michael. And we are both happy with other people.
That being said.....my kids both deserve some privacy. The same kind of privacy I kept when I was going through my divorce. There are things about David and the affects the sepsis from four years ago that have wreaked havoc on his little body. But I need to respect that little body and keep it to us. Kyle one day will have an amazing story to tell I hope, dealing with his emotions and anxieties over being a special needs sibling. But he is almost 15 now. It's no longer my story to tell. He's a private kind of guy and I'm going to respect that right now. I am going to enjoy my new relationship more privately as well. I'm finding I'm not needing to post about anything and everything that goes on and I'm super happy with the direction my life is going in by not seeking recognition or approval from anyone else outside my very close circle.
I will still get on sometimes to share updates and of course BIRTHDAY POSTS! (David's 21st is coming up in just 18 days!)
So for now...I'll sign off with this.
We're ok. All of us.
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