Last night, I had trouble sleeping. I have been feeling overwhelmed lately. It’s not due to a busy schedule. I don’t feel stressed by the volunteer commitments or social events. I have no problem saying “No” to those if they become a source of stress. I’ve been overwhelmed by Charlie’s medical care. The things I can’t say no to.
Late last night, I jumped on Twitter and commiserated with another micro preemie parent (the author of Handpicked Miracle). I told her how I dreaded the next day’s appointments. How I have nightmares in which I argue with insurance companies, drive to the wrong appointment, or pay fees for missed scheduled appointments. I try the best I can but, I still drop the ball such as in the situation with the glasses.
She responded, “i know. i get it. its so hard to keep up with EV.ery.thing. Being a parent is nonstop but this is so much more thn that” She’s right. Those of us with extreme preemies (and special needs children) are drafted into the sport of extreme parenting.
In Charlie’s case, if we aren’t headed to an appointment, then I am trying to solve an issue. What hoops do I have to jump through to get something covered by insurance? Why is she still formula dependent? Why are her neurological manifestations more prominent recently? Why did her sensory issues become more problematic? Why hasn’t this billing error been fixed? Did that doctor’s office send that order? And, what is going on with her ears?
With the age of two not much more than a month away, we are so close but yet so far.
Extreme parenting feels like a grueling race where the finish line keeps moving ahead.
Yes, during the last few days I’ve been struggling. I’ve been weary, exhausted, and thought, “How much longer must this go on?” I feel guilty for feeling this way because I know we are the lucky ones.
Tonight, I arrived home after another very long day. Once things settled down, I opened a package that arrived in the mail. My friend whose baby recently passed had sent Charlie an adaptive stroller insert. Enclosed along with the insert was a giant fuzzy Easter duck. Her caring gesture and thoughtfulness stirred me.
It gave me my second (or is it third, fourth, or fifth) wind.
Anyhow, I don’t care how far ahead that finish line moves. I can do this. I can run this race forever if need be. I have the very best friends and people rooting for us along the way.
I am an extreme parent who is fortunate to have extreme friends. Sometimes, I just need to remind myself of that.