I started the above project in February. One night while I was sewing Matthew decided to start screaming and not stop. And then my kid proceeded to spend most of March in and out of the ICU at a hospital over an hour away. And then I spent April following up with medical professionals and trying to get back on track with life. This sewing project has remained exactly as you see it for the better part of three months.
The project is a car themed pillowcase for a very young friend of mine. I had hoped to have it completed in fairly short order. For the record, I can sew a pillowcase in about ten minutes. At the rate I am going the project might be finished in time for Christmas. Or his university graduation. My days seem sufficiently crazy right now that sitting down to sew seems impossible. Perhaps during the summer months??
A few weeks ago I wrote about the fact that I would often put my coffee down, get caught up in caregiving, and not return to it until it was stone cold. I am detecting a theme here.
Life with a medically fragile child is unpredictable and interruptions to life are common. When the you know what hits the fan it isn’t as if one can say, “Hey Matthew, can you stop de-satting (when oxygen saturation levels drop dangerously) until I am done this pillowcase”.
My son’s care is pretty demanding on a day-to-day basis and his needs generally keep me hopping. Medically fragile children, by definition, are unstable and that instability can translate into some pretty scary stuff. Crises can hit at any time. And with kids like Matthew it can be hard to determine when you might be able to return to what you were doing before the crisis. Frankly, I am often amazed I am able to get anything substantial done at all.
If I have learned anything along this journey of extreme caregiving it is that it is good to have plans. It is good to keep living your life. But hang on to those plans loosely and be prepared to renegotiate their terms regularly. And sometimes you toss those plans out the window and make new plans.
It is Friday evening and Matthew has gone to the movies. Perhaps I will go finish a pillowcase.