I'm still navigating the world of parenting a child with a chronic illness. It's a new world and some days are great and some are terrible. Here are just a few things I have learned and I'm going to keep it simple because lets be real, if you are a parent of a child with chronic illness you're dog tired and have the attention span of a gnat.
1. Grieve what you have lost
This is important. What we lose as parents of these children is huge. We lose everything we dreamed of for them. And if like me you adopted and knew ahead of time what was coming you still need to grieve the life you had, the life you think your child deserves. It's painful and gritty. There is no way around it and your heart needs to grieve in order to move forward.
2. Find support groups
One thing that has kept me going is the huge support of friends that have children with the same condition as my son. My particular support group is for adoptive moms only, which binds us even closer as a group. Ask your local hospital if they have groups for the specific illness you are dealing with in your life. Get on facebook and look for a good group there as well.
3. Keep a good sense of humor
Life is crazy. Learn to laugh at it. Remember to find humor wherever it happens to land. Sometimes I get a good giggle when my son's iv of benadryl kicks in and he starts bobbing off like a bobble head. Some days it makes me cry but on the days when I feel a giggle in my throat I let it burst forth. The very sound can be shocking in an oncology unit, but I enjoy seeing others smile back at me. Together we find a small bit of sunshine in an otherwise
If you have people willing to help you in your life, take it!! If someone offers to bring you a meal, take it, eat it and be grateful. None of us are superhuman and we all need each other to survive this life!