My son, Chance, just turned 16. This should be an exciting time of him learning to drive and getting his license and a job. Except, he will never drive or have a job. He will never go to college. He will never get married or have children. He will live with me until one of us dies or I get too old or sick to care for him. He has cerebral palsy with seizures and severe developmental and intellectual disability. Chance doesn’t walk unassisted, or feed himself, or use the bathroom (he’s still in diapers), or talk. He has been diagnosed with a very rare chromosomal duplication of 11q 22.3, but the doctors don’t know yet what this means. There is no name for it, yet. He is at the developmental age of a 9 month old.
As the parent of a special needs child, sometimes I just live from one day to the next, one doctors appointment to the next, one therapy session to the next or one hospitalization to the next. I don’t think ahead too often. It hurts too much. But, as Chance is getting older, I have no choice but to try to plan for his never leaving home. My husband and I (okay, just me) would like to buy a motor home when he retires and travel around the country. Chance will be going with us, which complicates matters. He will still need to go to doctors appointments and what about his medications? I don’t know. I was planning to rent our house for an additional stream of income, but we’ll need a home base. Hmmmm, I don’t know.
That’s Chance behind his sister. When we had the double stroller (oh, how I miss you) people would always ask if they were twins. Chance is actually 3 1/2 years older than Emily. So when Emily goes off to college, Chance will be around 21 and still home with us. Sometimes this fact almost doubles me over in anguish, but I’ve got to shake it off and keep going. Most bloggers would now write about the Blessings and Gratitude and even Joy of having a special needs child. Not me.