I never knew I had the ability to put words to paper. To make them make sense. To make people relate to them.
In school.....writing papers was easy for me. I could BS my way through papers and make them as long or as short as they were supposed to be and fill them with information, wonder, or thoughts with little effort on my part. In fact, if I had applied myself to writing back when I was a teenager, I probably would have been blogging long before 10 years ago.
Yes. This page began roughly 10 years ago.
I had no idea why I did it. At first.....I just wanted to show people a glimpse into our lives. Without the social media filter. So I dabbled. I tinkered with posts here and there. Sometimes I published. Sometimes I didn't.
Three years ago, we received David's official diagnosis of his genetic condition.
I SEARCHED for information. I SEARCHED for families. I SEARCHED for answers.
I found 2 articles with very little clinical definitions of TELO-2 mutations and You-Hoover-Fong Syndrome.
I was so sad. I wanted my own little family of little YHF kiddos that I could love from afar and we could bond with. I wanted a little group of people we could relate to. I wanted a village of support for kids like my kid and siblings of those kids for my sibling of my kid.
And there was nothing.
So I used my written word. I figured out how to link searches of You-Hoover-Fong Syndrome and TELO-2 mutations to this blog. I started hashtagging the shit out of #TELO2 and #youhooverfongsyndrome on social media.
And one day......someone reached out. And after a while, another person reached out. And shortly after that a few more reached out. I started a little facebook support group specific to OUR kids. We're still a small group. This syndrome needs more talk behind it to get a name on the board for research. I am TRYING. We are TRYING.
And while I am still sorting my life out and healing in the process........I have this little group of people who take up my slack while I've got other things going on. They are now hashtagging. They are now bringing awareness. Some of them are getting ready to celebrate their very first Rare Disease Day (2/29) with an ACTUAL diagnosis.
While I never knew my purpose when I wrote before.....I kinda do now. I want to share what life is like with a child with a TELO2 mutation. I want to share what it feels like to be a mother of a young man completely reliant on my care for him. I want to share our life so you can learn empathy and happiness and joy in my life. All while seeing that it's hard. I want you to understand what it's like to be a little brother to a kiddo like this. To have anxiety over the little things in life because he feels so big in life. I want to let you watch me rise and fall and rise again as a single mom to make sure you see that it's ok to rise and fall in your life. I want you to see our imperfections because you will definitely feel better about your imperfections. LOL
I want to share this kid with you. He's cranky today. But I want to share both his happy and his sad with you. I want you to feel his joy when he shares it with me.
I want to Embrace. Empower. And Educate. All of you who bother to read. All of you who care. I just want more awareness. For David. For all my other little YHFS families. For other rare disease families.
