Friends I'm Glad to Have (Now That I'm a Special Needs Mom)

I am gearing up for a very busy week. We've got a meeting with our case worker from Golden Gate Regional to talk about therapies and the boys' recent evaluations. Then Henry's got his first PT session and the swallow study and and OT appointment. And then mama needs a yoga class. For real.

As we navigate this whirlwind of parenting, we're lucky to have friends and family there to support and encourage us. And I've been thinking lately about the ways that our friends show that they're there for us.

In general, our friends act like our kids are normal. They talk to them like any other toddler or baby, play with them, hold them - until Henry starts screaming for me ;) They commiserate about the struggles we have in common. Nap time. Potty training. Car seats. Vegetables. They cheer on our kids when they hit milestones no matter when those milestones happen. They find experiences they can relate to. Last week when Calvin had to have blood drawn, I was worried about him being old enough to be scared and freak out, unlike when he was a less-aware little baby. My friend Allison was like "Oh I had to take my daughter to have blood drawn and it was a nightmare!" Some things are a nightmare for all parents! Maybe Allison's daughter has had one blood draw and Calvin has had half a dozen, but she can still relate.

This makes us feel accepted. It shows us we belong in the world of parents and families, even those with typical kiddos. And in many ways our boys are doing so well that I think it's easy to forget or overlook that there's anything different about them at all. I'm still not sure if the babysitters at the gym realize there's anything unusual about them.

And though it's nice to feel that we and our kids are accepted, though it's nice to be treated like any other normal family, James and I never forget that we're not really normal. And it can be very powerful for us to have our not-normalness validated.

So here are some examples of how our friends have been supportive of our not-normalness. I didn't name names, but these people may know who they are :) And I want to say that of course we also have super supportive family members, some of whom I've written about before, but for this one I really wanted to focus on friends.

The Friend Who Asks

This is a friend who remembers that my kids had a doctor appointment, and then texts me later that evening to ask how it went. So simple, but so thoughtful and meaningful! This is also the friend who asks questions about the boys' diagnoses and how they are doing because she cares about them. You might think that asking me about 22q or Dup15q would upset me, and ok, it might. But when a friend takes sincere interest, to me it says that they care.

The Friend Who Researches
After learning about Henry's diagnosis, one of my friends texted to ask the exact name of the syndrome. She said that she was upset for us and that research was her way of dealing with things. I was really touched. Another friend brought us a book she had come across about families dealing with all different types of exceptional children (Um, I still haven't cracked it open yet... but I appreciate it! And I will! I will start reading it I swear!) Reading about our kids' syndromes or about the experience of families like ours tells me that these friends feel its important to learn about what makes our family different (and special).

The Friend Who Brings Dinner
If you show up at my door with a casserole, I will be forever grateful. Getting dinner on the table can be the hardest part of my day, especially on days when we have appointments. One friend, upon learning about Henry's diagnosis, responded immediately with "I'm bringing you dinner!" So to this friend, THANK YOU! You are awesome.

The Friend Who Babysits
I can't always bring both kids to our appointments. For example, Henry's swallow study involves some radiation (x-ray) so I'm not allowed to bring Calvin at all. I definitely need a babysitter from time to time. But most of my friends have kids of their own and are generally too busy themselves to offer to watch one of mine. So when someone does babysit for me it really means a lot!

The Friend Who Listens
James and I often feel like we're the only people we can turn to when we're feeling upset about the boys. But we know we do have friends who have been there and would always be there to listen when we need them, if we feel like we're ready to talk.

The Friend Who's Been There
We don't know many other special needs parents in real life. But we do know a mom with a son that also has 22q, and a few other people whose kids have different kinds of special needs, like medical conditions, have reached out to us on the interweb because our story resonated with them. There have even been friends who reached out because they have other kinds of personal experiences that made them feel connected to us. These have been small, but very touching, interactions. It really is powerful to hear from someone who can say they've been where we are, know what it's like, and made it through.



Big hugs and thanks and love to all our friends. Thanks for putting up with us, being there for us, and having fun with us. I hope that in some way we are able to do the same for you :)