I just have a few minutes to blog this week. Literally! I need to leave to pick the kids up from school in 15 minutes! But, I really want to try to post something at least once a week.
All week I’ve been writing a couple of blogs in my head about how special needs dads are sexy because of the way they love, especially my husband and another about the value of moms..I’ll post them once I actually write them but today it all seems irrelevant.
Today, actually, all week long I feel like I’ve been swimming upstream through waves of impossible decisions and no right answers. Maybe all moms can relate, but today I am writing as a mom of children with a rare disease. A rare disease that has no cure. A rare disease that has no cure and is slowly progressing through my child’s entire body. A rare disease that has no cure and is slowly progressing through my child’s entire body and effecting every single thing they do every single day.
Do you feel overwhelmed reading that last paragraph?
Man, it feels very overwhelming to write it because behind every word is something I’m worried about, or battling, or fearing will happen to my babies. It is a hard way to live.
Everyday is not like that. I try hard, I’m sure all of us are trying hard to take care of ourselves, to get away for a little bit here and there. And I say trying ‘hard’ because it is actually a very hard thing to do when you are caring for someone with a rare disease, a chronic illness, a progressive debilitating disorder.
On the days we can’t do that…get away, take care of ourselves…it is usually because something has hit like a tidal wave. It seems like just one thing never happens…it seems like it is always 10 things that happen all at the same time.
The only point to this blog is to say I hear you out there moms. I feel you. It is one of those weeks. But we will make it through, we always do. We will be able to decide on a medicine that will help our little one…we will find one with the least side effects. We will resolve that issue with the IEP, we will shove the fears about the future out of the way. We will find time to spend quality time with our other children. We will laugh with our kids. We will get our snuggles in at bedtime.
We will have that day at the spa someday. For now, take a deep breath. Find a quiet minute and then keep on. Because you are a good mom and you are doing the best you can.
Trust me, that last line is intended for me as much as anyone else. Sometimes we just have to remind ourselves that we have a hard job and we are doing it well.