Homeschooling Kids with Chronic Illness

I recently published an article titled: Homeschooling: A Good Option for Kids with Chronic Illness

Having kids with a chronic condition like Shwachman-Diamond Syndrome can make homeschooling a challenge. It makes regular school a challenge. We are heading into our tenth year of homeschooling and each year I think to myself, "This is going to be the year we won't have a surgery or several bone marrow biopsies that get in the way of homeschooling. This will be the year we won't have to go to as many doctor visits." Every year, I am proven wrong!

While I know that we will have these events, I want my kids to have a normal life and I think I try to *pretend* that they are normal kids so that we can live as normal a life as is possible. This year is different, though. I really thought we'd have their bone marrow biopsies in just over a week and then be free from hospitals for the rest of the year (she says as she laughs).

We've made it through over 15 bone marrow biopsies on each child, many, many endoscopies, oral surgeries, neurosurgery and other procedures. Several hospitalizations over the years...... so you'd think I'd be used to the ever changing schedule due to medical events. Not so. This fall one of the boys will be having surgery at CHOP, requiring us to arrive many days in advance (due to his complicated case we are told!) ........ I think I have a handle on the bone marrow biopsies. I can even go with the boys by myself and handle two of them going under anesthesia at once. It is the sheer number of things that never seem to end that wear us down. We've got DEXA scans, GI appointments, dentist appointments, eye apppointments, bone marrow biopsies, surgery,rheumatology appointments, travel to hospitals far away (8 hours drive to Cincy and 8 hours to CHOP) to see the best specilists...and the list goes on. Recurrent cellulitis and infections, infusions at home....... (all while thanking God it isn't worse!)

We've realized that we are not succsseful at homeschooling while the boys are at the hospital or having procedures so we have tried to organize for success when we are home. Certainly they do some school work while we are on the road. We listen to books on tape and education CDs in the car, we fit in filed trips to historicplaces and science museums. These are all thing swe can do to get educated on the road. If you look around the blog here, you'll see that we manage to fit in quite a bit of fun and learning into our days.

I truly believe that God will give us all the grace we need to homeschool around these events. We might not be the typical homeschooling family (is there such a thing!?), but God gets us through each day! There is a wonderful group of Catholic moms of Special needs kids....to join, send an email to catholicparentsofspecialneedschildren-subscribe@yhoogroups.com
Sometimes it is nice to talk to those who can understand how tiring it is to spend a summer driving to hospitals around the country, going through various procedures with your kids, etc......

Here's to another year of homeschooling! I know that the Will of God will never take me where the grace of God won't be with me. I hope I can remember that when I start getting stressed out that we are behind due to hospitalizations and medical issues!