One of the things that was, and still is, difficult about being a parent of a kid with a rare disorder is that it can feel really isolating. No one I knew in real life could really understand what James and I were going through. No one we knew in real life had ever been through an experience like ours. We feel different. And feeling different can feel very lonely.
But the internet and social media offer lots of ways to connect with other parents who have had experiences like ours. There are forums and support groups for rare disorders like Dup15q and other bloggers like me reaching out by sharing their stories.
Unfortunately, my first experiences with those special needs parenting groups online were… well… terrifying.
Forums for parent support are where parents go to ask questions or share struggles and seek advice. They are great resources for tapping into the collective knowledge and wisdom of other parents who have stood where you are and who figured out how to move forward. But, they can be overwhelming for a newbie parent who isn’t ready to read about challenges that may or may not lie ahead. I remember reading posts from parents of older Dup15q kids seeking advice about agressive behavior… posts about awful experiences with school systems… posts about seizures wreaking havoc… And yep, those are realities that my own son and my own family may face down the road. It’s good to know I’ll have a place to go when it’s my turn to need advice, but WOAH! In those early days of trying to wrap my head around this new normal, I was so not ready to read about that stuff.
Even the family stories on the Dup15q Alliance website were scary at first. They give an honest perspective on raising kids with Dup15q, the challenges and the successes, but that honest perspective was still hard for me to digest when I was reeling from Henry’s diagnosis.
I felt afraid to reach out to other special needs parents. I was afraid I would be hit with more things to worry about. I was afraid that their fear and stress would overcome me. And yet, part of me still wanted to connect to parents with similar experiences in the hopes of feeling a little less alone in this journey.
And then my search led me to Instagram, which I had just started using right before Henry was born. I searched hashtags related to Dup15q and there I found what I was looking for: other families of Super Dupers like Henry, sharing glimpses of special and happy moments in their lives.
Connecting with families on Instagram is so different from the Facebook groups, or support forums because Instagram isn’t about seeking help, it’s about sharing moments. On Instagram, people are much more likely to share the good stuff – the moments of joy, the moments of beauty, the surprisingly special moments. And that is just what I needed! I needed to see lots of beautiful pictures of kids with Dup15q and their families. I needed to see proud posts about milestones and birthdays. I needed to see the funny and sweet and sentimental things that parents and siblings of kids like Henry feel are important enough to share.
Seeing those happy Instagram-able moments helps me remember that our life will be filled with those funny and sweet and sentimental thngs too. It reminds me that we are not alone. It makes me feel like I can embrace this diagnosis and all that comes with it.
So to all the Instagrammers out there representing Dup15q I want to shout out a big THANK YOU!! Thank you for the glimpses of your special moments. Thank you for showing me how beautiful it can be to raise a kid with Dup15q.
Check out these two Dup15q moms who so often brighten my day with posts about their awesome kids on Instagram.
Jiyoung has a son, Lucas, just a year older than Henry. Every time I get to see Luki reach a milestone on Instagram, it fills me with hope that before long Henry will get there too! Find her on Instagram as Lucas51911, or on her blog, My Special Life.
Darlyn is mom to a teenager daughter, Stephanie, who has a type of Dup15q known as Idic15. I so appreciate getting glimpses of sweet Stephanie’s life. It’s really special to get to see older kids with Dup15q at their best.
Darlyn is also a designer who makes gorgeous play tents for kids! Check out her brand, AshleyGabby Designs and find her on Instagram at AshleyGabbyDesigns. Darlyn donates a portion of her company’s profits to Idic15 Canada, an organization that provides resources to families and individuals with Idic15, and funds research on Idic15.
Thank you Jiyoung and Darlyn! I’m so glad I found you on Instagram, and thanks for letting me include your cuties in this post!