Photo by Julie Verlinden.
I left my cell phone at home one night by accident while I went to an arts and crafts show at a friend's house. I didn't even realize it until I was about to leave, 3 hours or so later. Here's what happened:
I had my son in tow, as my friends were way overdue for some bonding time with him. As I expected, he was whisked away by the bevy of beauties who consider themselves auntie, and I had a chance to scour the tables for some goodies. I came upon an adorable presentation of unique baby clothes, blankets, and accesssoires. The designer, a woman who looked to be about my age, asked if I might be looking for something specific. I was obsessed with the little bubble suits she had set out, but there were only options for girls, so I inquire about boys' options. She's willing to make some to order, so I ask about customization to accommodate my son's g-tube, expecting to be met with sympathy or lots of questions. Instead, she nods confidently and says, "my daughter has Spina Bifida, I completely understand."
"Ah, yes. The medically complex life!" I chuckle back.
I wanted to cry. Not because I felt sorry for her or her daughter, but because I felt so damn relieved to have encountered someone I wouldn't have to explain myself to while being looked at like I'm speaking another language. I met someone I had an instant connection with. I felt like, with her response, she had taken hold of my hand, symbolizing that we are in this together. It was so powerful, yet so simple. At the time, I was just about to launch my blog, so I tell her to connect with me on social media, in case she wants to follow someone she can relate to.
I want to know more about her, I want to ask questions, I want to talk about doctors and therapies and make really dark jokes without worrying about making someone uncomfortable. (Developing a weirdly dark sense of humor is a very common coping mechanism for parents who have medically complex children. For example, "Ugh, What a shitty day, I wish I had a feeding tube for wine.") Knowing that she's trying to make some sales here, I meander around the other booths so she doesn't think I'm a complete stalker.
After a few hours of catching up with friends, purchasing some unique handmade goodies, and nibbling on some snacks (dinner), I finally get my wish. The event is technically over, and I help my newfound friend take down her booth over discussions of therapies, independent mobility, frustrations, hopes, fears, birth stories, and hospital visits -- peppered with some dark humor, of course. What a delight! I can't tell you how good it felt to talk about these things as normally as most other people talk about topics like teething, or chasing after their crawling baby, or how their baby is starting to talk already.
I love hearing about my friends' typically developing kids' milestones. I want to hear about it. But, at times it is difficult to listen to. It's a really big reminder of how difficult every thing has been for our son and our family. When I talk about my son with groups of moms with typical kids, I feel like my story always becomes the focus and I become the center of attention - even if I wasn't trying to be. So I tend to not mention anything unless it comes up -- like if someone sees his feeding tube and asks about it. To have met another mom like me in person, was so amazing. Most of my support group moms are all online. Actually, now that I think of it, all of them are. But not now. Now I have a real- life new friend, who understands how complicated life can get, and can talk about it with comfort and ease, and empathy -- not sympathy. A first time mom who has also been through hell and back, survived to talk about it, and sometimes, even, laugh about it.