Sometimes I wish the minutes in the day weren’t so calculated. I’m tired. We’re tired. We max out our schedule at all times, but we have to.
Alyssa is seen by her therapists and teachers seven times per week. Seven. And that is JUST therapy and lessons, that doesn’t include her PCP or her specialists, blood work, or anything in between. My phone rings nonstop, follow up information, making new appointments, rescheduling appointments, nursing lines calling back to answer my questions, coordinating medication and supplies deliveries. Add traveling for speciality care since our city is slowing progressing in the healthcare field.
Her feeding schedule, set in stone, 10a.m, 2p.m, 7p.m, 11:30p.m. Water flush every hour in between feeds, medication at 7p.m before her feeding starts. Diaper changes every 2 hours so she doesn’t develop any rashes. Putting her in the stander several times a day for an hour each. Everything is scheduled. 24/7. You can barely leave her alone for 5 seconds, you won’t find a play pen in our house that she can sit in and entertain herself. We also try to take Alyssa out to fun events so she doesn’t correlate the car with appointments/ the hospital.
In between that we are pushed to work, Mark works full time in a stressful environment and I work part time from home. I don’t know how to fit anymore hours into a day, minutes even. When nursing falls through I can barely work at all since every minute is dedicated to teaching, feeding, flushing, changing, carrying, watching, appointments, and everything else on our list.
Keeping the house clean is beyond me some days, and showering? I’ll get to that at 10p.m when I put her down, that gives me 15 minutes before she starts crying and I just put her in our bed. It’s easier. I can check her tubing and pump, air out her ostomy, and just look at her every hour from the comfort of our bed. There is no real break.
When people say “you wouldn’t even know something was wrong with her” I just laugh. It’s because we kill ourselves to get her the care and attention she needs to remain clean, healthy, active, and involved. So much goes into our routine.
I know I rush around, I’m constantly shouting out new dates for appointments or deliveries, what needs to be done, where we need to go. I honestly annoy myself. But I’m trying, and I’m definitely still learning. We are learning as a family, and while some lessons are more difficult than others, it’s our journey together, as cupcakes family.
Alyssa enjoying some Christmas lights with her daddy.