When I meet someone new, or someone hears about the life we live, and the challenges we’ve faced with the littles, you can see the pity in their eyes, and the change in their voice.
I hate that moment.
You see I gave up pity parties a long time ago. When we were in the NICU with MiniMan, I came to the realization that as much as I wanted to throw a pity party, it wasn’t going to do anything for my son. Wasting my emotions on something that didn’t serve him was a waste. Does this mean that I haven’t had a single pity party since then. Goodness no! I do have pity parties, but I follow my own rules. When chatting with preemie moms and helping them through their NICU stay, I tell other moms to have a pity party, but after 20 minutes you take a deep breath and you move on. That’s how I live life these days.
The other thing people seem to pass over is that I didn’t walk into life with Aspie Son, and a CP daughter. We came upon the hurdles one at a time. And yes there are days when it seems like my 100m hurdle race has turned into a marathon of hurdles, but we take them one at a time. There was a day when having a preemie was overwhelming, but living those months in the hospital prepared me for a medically complex child. Knowing how and where to researching things lead me to Sensory processing issues in preemies, which took us to Occupational Therapy, which lead to our ASD diagnosis. A diagnosis that was hard to handle at the beginning, but that we were able to get years sooner than a usual parent because we knew what to look for and where to find the information we needed.
If I look at the crappy side of things, if I take the attitude that this is punishment or a burden, then yes it would be overwhelming. But my children aren’t a burden. I have a much different parenthood than I had anticipate. But as a bonus I’m not a hockey mom! Some parents spend hours a week running their kids to sports. Instead we run our kids to therapy. And with everything we’ve been through, there are times when I think we might appreciate the little things just a bit more.
Please don’t look at high needs parents with pity. But also don’t think of us as super heroes. We’re just doing what our kids need us to, and if you were in our shoes you would too. I don’t want a pedestal, or a ticker tape parade. I’m just a mom doing the best I can for my kids.