When David was diagnosed in January of 2017, we were told he was the 7th known worldwide with this syndrome.
We researched. We looked. We tried to find more.
We failed.
For a little bit.
Then I wrote a blog about it. And someone found my post.
They were one of the original 6 before David.
In the year and a half since David's diagnosis, we have found numerous others. Many through my original blog post. A few from hashtagging the crap out of it on Facebook and Instagram. The original family whose 3 children were diagnosed first. Two children from other countries. Sweet families with young children and older children. And being a newer syndrome (I believe the first diagnosis was in May '16), I know there will be more.
It is not my dream that fellow parents go through this. It is not my dream to watch others struggle in this hard, hard life.
It is my dream that we can come together as a family with similar situations and help each other through it. The support. The love for our children. The sharing of accomplishments and defeats.
Through our tiny little group (I think there are like 12 members now), we are together. And we are discovering that while our children all have mutations of their TELO2 genes, they are all still very individual people with their own distinct personalities. And just like with any syndrome or disease, they are all differently delayed. Some walk. Some can talk. Some can't hear. Some don't eat by mouth.
But what I have found...….is that we are here for each other to cheer one another on. When Sawyer walked, we shared in that joy. When we saw Daniel at his field day in England, we shared in that joy. Heck. If they smiled and had one good moment in one whole day, that is something we would celebrate together.
We also came together to discuss meds, tests, fears, and the woes of being parents of disabled children. We can cry and whine on that page with no judgment. We are ALL tired. We are ALL doing the best we can do. And sometimes that might not always be enough for our kiddos. Sometimes they require more from us than we have. But my oh my. I love to see us all give our all. Our hearts all belong to these kids. And because our hearts are all tied to our kids, and our kids are all tied to each other..…..we are all a little family.
I will continue to rally to bring awareness to our kids. I will rally to bring awareness to their rare disease.
I will continue to cheer and love ALL of these kids from afar. They are so special to me and my heart is so overjoyed that my little blog has helped bring our families together. I will forever be grateful for the ability I have to write. It brings me an overwhelming happiness to share our story.
I have a small audience who reads. But I'm discovering my purpose from this blog and these families we have connected with. Never hesitate to share my words with others. Because maybe it will help our small community grow larger. Grow AWARENESS. Grow UNDERSTANDING. And grow LOVE.
