When I met with the school nurse.. well..the district-wide nurse a few months ago I was so happy to get the elementary school prepared about Natalie. She’ll be the only child in her school with a severe CHD, let alone half of a heart, so I thought “yup, let’s do this”. Everyone is always really nice to talk to which makes this anxiety-filled mom feel at ease. When I first sat down with the nurse she immediately shows me all of the printouts she acquired about single ventricle hearts and Tricuspid Atresia. She confessed to have never met a child with a CHD like this and I told that definitely didn’t surprise me.
I spent an hour talking with the nurse and we drew up a really great health plan for Natalie. This plan stays within the school system and follows Natalie as she climbs up to each new grade. We can revisit the plan anytime and change things if needed. Plus, the principal, assistant principal, everyone at the school is made aware of the health plan. More easily put- every major official at the school is prepared. The nurse and I listed every single tiny thing we could in the health plan. I knew that a few weeks later we’d be seeing the cardiologist for Natalie’s 6 month heart check-up so I let the doc take a good look at it. She scanned the document for a good minute or so..”Looks great! I wouldn’t change a thing!” I thought I listed too much and she said that’s what she likes about it. The cardiologist gets a little worried when not enough is listed on these health plans for these CHD survivors.
Sorry for the bad copy. The school printer was on the fritz that day. But this gives you can idea of what’s included. We made sure to include things that would help identify what Natalie’s normals are and what’s definitely not normal. The school’s front office secretary confessed that she’s a little nervous. You see, she would be the first one to care for Natalie if she comes to the office. And she’s in charge of making parent phone calls. So I was warned that I may get several in the first month or so. This is why I’ll be taking online courses at home, only a few short blocks away.
Luckily, Natalie will have the same kindergarten teacher that her big brother had. She is very comfortable with Natalie and is well aware of her “special heart”. I think that’s what’s going to make it or break it. I don’t think it will break it.
I found out that same day of planning this with the nurse, a 7th grader in the local middle school and their parents just completed their health plan. Want to know what the disability was?
Yup! So maybe it’s not as uncommon as I thought. Crazy isn’t it?