Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
When Community Becomes Family
When I was driving our 8-year-old to school he said “Mom, you have a lot of friends.” This took me by surprise since I rarely go out with friends or chat on the phone when my kids are around. He never sees me get ready for “girls’ night out” or pack my bags for a moms only get away.
We don’t even entertain at our house unless it’s a party for one of our kids. My life right now is focused on raising three amazing boys and juggling all that comes with that; extracurricular activities are few and far between.
I wasn’t exactly sure where he was getting the idea that I had a lot of friends. Then he said, “you know, all the people with CDG. The ones you see in California, the ones in Australia….”
Ah hah. Those friends.
When we received our son’s diagnosis of Congenital Disorder of Glycosylation one of the first things I did was join an online Facebook group, a group dedicated for families around the globe affected by CDG as well as medical professionals and researchers invested in the disorder.
Upon joining I was welcomed with open arms with comments of encouragement and posts of members sharing their children with me. I had figured that this page was a page to ask questions and gain knowledge about this rare condition.
I assumed it was a page where I could find files and resources to help navigate this unfamiliar journey. I thought that it was a place to ask “what do you do, what have you done, and what do you think?” regarding issues our son was having.
What a surprise to find out that this page was not what I was expecting.
Yes, it is a page that offers all of what I mentioned above. It’s most definitely a page for parents to help each other and brainstorm when their own specialists are perplexed with their child. A page to gather the most recent research and share what medications and therapies have helped along the way.
What I didn’t know is the page would be all of that and so much more. A page where my tribe is. A page where strangers have become family. A page where we all weep when we lose someone to this life-threatening disorder. A page where we all jump for joy when a milestone is met and we truly know that magic has happened.
A page where I have become so close with many of the parents that “friends” isn’t the correct term; soul sisters is more like it.
We know life is crazy and no matter what happens in life we always have each other’s back. We know that we don’t have to see each other, talk, or text constantly to be important in each other’s lives. We send group chat messages and texts to share heart-warming or you’re-never-gonna-believe-this-happened moments, and sometimes an occasional hilarious meme.
But life is crazy. Our lives are crazy. We can go weeks, sometimes months without one on one contact. But these are the women who truly “get it” and I have the utmost respect and deep love for them. My tribe. My soul sisters. Having them in my life has been one of the greatest things to happen since diagnosis day.
When I joined the small FB community I had no idea what I was getting myself into.
I had no idea I would become so invested in an online family and over the years these families would feel like my own. I never knew I would find women who feel like home. A genuine feeling of belonging. Who knew you could have such a strong bond with people you don’t physically spend hours with. I never expected this.
From day one I have always thought that our CDG community was something special.
And 5 years later; I know it is.
