Truth.
We are spent.
Tired.
Stretched.
Stressed.
We were coasting. Coping. Busy with a capital “B”, but glad it was all positive, good stuff.
But. It's not all positive.
Gwendolyn is fine. Thank God. But “fine” in the SMA world is still an awful lot of life saving. And that is hard. Plain hard. Last night Gwendolyn turned blue in the bath. Nothing happened. She was simply too tired. She didn't take a nap. And simply because she was tired, she couldn't breathe. Even though she wanted a bath. Even though she was excited to sing princess music with Mommy and Daddy. Even though she was fine one minute. She was blue in the next and we were running her, still wet and soapy, to get her breathing machine back on. But, she's fine now. And so we breathe a sigh of relief. But, it takes a toll.
I sometimes find myself singing (in my mind) a song from one of Gwendolyn's current movie favorites, “Finding Nemo.”
Just keep swimming, just keep swimming, swimming, swimming…
Because we have to. We have to carry on. Even though we sometimes feel knocked down, we have to dust off and keep going. Gwendolyn needs us. We need each other. And so we just keep swimming.
But, we are dealing with some other stressful things on top of SMA. Big stuff. And it is tough. Really tough. Navigating life with SMA is trying and testing on a day-to-day basis. There are no breaks or breathers from the realities of this disease. But “normal” life goes on around us and other stresses come in and out of our lives. We're already gasping for air with SMA and these other factors can sometimes push that stress level over the top making us feel like we aren't swimming as well as we usually do. And sometimes we feel like we can barely swim at all.
We are so busy with trying to give Gwendolyn fun and rich experiences, navigating preschool and new equipment, the pressures of normal life and regular obligations, and the breadth and depth of all the wonderful yet consuming things that are happening with the Gwendolyn Strong Foundation that we simply carry on because that's what we have to do. And sometimes we don't stop the way we used to to decompress. And we are feeling like we need to — just a bit.
We have to.
Because when extra life stresses happen, well, we don't have much room for those extras.
Don't worry, we aren't throwing the towel in — nowhere near that. Just stopping for a minute, trying to catch our breath, so we can…
Just keep swimming, just keep swimming, swimming, swimming….