Last week was my last at work, and it was just a very difficult week emotionally. I didn’t sleep well. I have been busy the last two days interviewing people for web design and social media marketing work, plus legal help. Next I’m off to a yoga retreat center and I’m really looking forward to some time to processs all the big changes in my life these past few months.
And so in the middle of all of this personal transition, I learn that my stepson is dying. Last rights were delivered last night. I haven’t received word yet whether he has passed.
Adam is profoundly mentally impaired. He outlived every prediction for his life. He had 22 surgeries before age 2 and was written up in medical journals. He outlived his mother. He was 34.
He was supposed to have never walked but he never got the memo. He was like a very big toddler to care for - exhausting. He was always the most popular kid at his home even though he was nonverbal and could only communicate simple needs.
He was always in a home during my marriage to his dad, but we had him with us for the holidays - usually alone, with no one else to support us caring for a kid who grabbed at the books and crumpled any papers we left out and slept only a few hours at night.
I had never been around special needs people much before him. I was a part of his IEPs, the planning sessions with his e, whole care team for his learning objectives - this year he will finally press a button to indicate he wants to go outside, or learn to eat with a fork, or will get potty trained. It took round the clock care to keep him alive and safe and it was incredible to see the bonds his care workers had with him, even though he likely never knew their names, and we were never even sure if he recognized his own father.
My ex’s mom lived across the country and had little to do with us. Adam’s mother also moved far away from him when he Adam was young, leaving his dad and me his only relatives on the East coast. Because Adam was on Medicaid, this affected where we lived, so that he could keep his spot in his home, and meant we were the ones who had to be involved when he was hospitalized. My parents had no empathy for the situation and never helped. Adam had a huge impact on my first marriage. His dad and I were alone in the responsibility for his care but fortunately the people in his home were amazing and I don’t know what we would have done without them. I never could understand the complete devotion they had to Adam who gave so little in return, but it was a wonder to see how much love people felt for him. I got to see something pure in people because of him.
I haven’t sen Adam in many years. He was in NC and I was in NY. He wouldn’t have known me and the time and money to travel there didn’t make sense. But I still love him as my own child.
