There was a trend for a while where beefy workout people would say they’re built different. I think it involved cracking an egg with their bicep. Every time I hear that I think “Yeah me too, but I’m not out here bragging about it.” I am, though, built different. I think I was meant to be the mom of a medically complicated kid. Not that anyone would wish for their child to struggle. With every new thing that pops up, I take it on the chin in stride. I don’t know why I used that phrase. I’m not even sure I fully understand what it means.
My son was born with congenital heart disease. We found out at my 20-week anatomy scan and had to immediately move into action. Sure I had a mini freakout for 24-48 hours, but then I began planning for our life to be different. There's nothing wrong with people who freak out for a longer period. Everyone processes in their own way. For me, it felt like it would be harmful to the baby to keep stressing so I started planning. I joined Facebook groups. I did research. I talked to other heart moms. I made moves. Nothing fully prepares you for your 3-day-old baby having surgery on their heart, but I did what I could.
If that wasn't enough, he was also born with G6PD. This means that certain things cause his red blood cells to break down. He’ll never be able to have things like alcohol or fava beans without them causing an issue. There are different severities, but this is what his amounts to. Again, you panic for 24 hours and then you spring into action. To be honest we’re still in the learning phases about this one.
The most recent development for my little ray of sunshine is autism. Although this one was handled differently. There was no big shock. We already had suspicions. No need for a freakout either. It's just a part of life. The real shock comes from all of the balls you have to have in the air for scheduling. An hour of speech therapy to help with his verbal delay. An hour of occupational therapy to help with sensory issues. Play therapy to help him be social. Not to mention the minimum of 10 hours ABA therapy we’ll be starting soon. I have to schedule and be available for all of those. Perks of being a stay-at-home parent I guess.
That's where my freakout lives. Trying to make sure I can keep the schedule intact and not miss or forget anything. We now live by our Google calendar. At least, we should be. Twice in the last week I had to reschedule due to a conflict I missed or declined when I had already gotten excited. Mistakes like that trigger a feeling of failure. I’m not a fan of it, but I don’t wallow in it. I have to keep moving forward.
I know I’m not the only one to have taken this journey. After all, if I was, there wouldn’t be Facebook groups for me to join. Medical moms have to be made from tough stuff. Not everyone would be able to keep rolling with the punches this way. I’m built different.