For those of you who know me well, it will come as little surprise to you that I have always struggled a little bit to fit. I have few close friends and am totally okay with being on my own. However, becoming a mom has changed things a bit, and becoming a special needs mom has really changed things. I figured that, once I became a mom, I would meet all these other moms and we would do mom things. I would find my tribe and we would do lunch, coffee and playdates. I would find my group of moms that I fit in with and we would all have the common ground of being a mom.
Well, as we all know, things didn’t go quite to plan. I didn’t make it to the new mommy meetings organized by the woman who did my birthing class. I didn’t go to a mommy and me swimming class. In fact, I didn’t go out much at all with her for the first nine months to a year. I also pulled away from some of the friendships I had pre birth. It was painful to talk about what was going on, I was ashamed* the I couldn’t keep her out of the hospital (please read my footnote before reacting to that statement), and it was stressful trying to learn how to care for a medically complex child. To make this more complicated, we up and moved across the country when she was only three months old.
Slowly I did reach out to groups of people via facebook. Initially it was groups of people with feeding tubes. At the beginning those groups were both helpful and frustrating. People have tubes for an exhausting list of reasons. I wanted to talk to moms that had been through exactly what I was going through. Even though no other person has Lyra’s exact diagnosis, I at least wanted to talk to parents of children with one or the other. I wanted to find a place where I felt like we fit in. I did reach out to a few groups and was turned away because Lyra had two genetic conditions, not just the one the group focused on.
In the end I ended up turning back to my feeding tube groups and told them what happened. The response I got started a slow process of changing how I viewed this whole fitting in thing. I had moms invite me into groups focused on other genetic conditions because it was “about support and inclusion, not exclusion and feeling more isolated than we already do.” I also started to notice how other parents reacted to Lyra. Of course, I got the people who were totally freaked out by her and acted as if her condition was contagious. But I also noticed how many people who just met us where we were that month/week/day.
While it has literally taken months for me to get it, I have realized that it isn’t about fitting into this group or that group. The people who matter will make space for you. They don’t judge you (or your child) for not being at the same place their kid is. They don’t care that your child has “attachments”. They make space for you in their lives without expectations, judgements, or pity (I hate pity). They celebrate every milestone with you, no matter when it happens. And in the end, you realize you actually have more common ground than you thought (teething is the great equalizer).
So once again, I am okay with not fitting in. I never really have fit into one group or another. I shouldn’t expect to now. But I have learned to keep an open mind and watch for the people willing to make space, and to ignore those who want me to fit into one predefined.
Trying to get a picture of my “monsters” at Halloween
- On being ashamed: Let me be clear, I have never been ashamed of my daughter. For a time, I felt like a failure as a mom that I couldn’t keep her out of the hospital. I felt like I wasn’t qualified for the job. What I quickly learned was that knowing when Lyra needed more serious medical intervention was one of my strengths, not a weakness.