For those of us who have children with disabilities, we sometimes forget what life was like before––when life wasn't about doctor’s appointments, medical equipment, therapists, respite and where to get it, guilt and how not to feel it, and a level of exhaustion you did not know was possible.
When the brothers or sisters are older than the child with a disability, it can be very difficult for them to forget a simpler life. Younger siblings don't seem to have quite the same struggle because this is the only life they've known, though they still struggle from time to time.
For older siblings––the ones who take so much upon themselves, who have to grow up far too soon, who are aware life isn't fair, and who know that sometimes we are dealt a very difficult hand––the road can seem especially long. They are put in a position no one would envy and they give so much. Raising a child with disabilities can be very difficult for a mom or dad to understand, but it can be impossible for an 11-year-old to process.
So on this Siblings Day (April 10), please take time to hug all of your children. Remind them they are all special, and thank them for everything they do and all they give every day. Also, give them permission to say it's hard, that they don't like it, and that they wish things were different. We all do. But sometimes just having said it out loud can make all the difference in the world.
For a child with complex medical needs, getting and keeping them warm can be a struggle. Here are some ideas that might help.
Caring for a medically complex child is all-consuming. It can take a toll on a relationship. Here's how my husband and I kept our marriage strong.