“What does he have?” I am asked, usually when my adult child is squawking like an infant or when his diapers poke out above his jeans. Today I can say ‘what he has’ and know that it can be found on the internet. Even in Wikipedia: 22q13 deletion syndrome (spoken as twenty-two q one three, see Locus (genetics)) is a genetic disorder caused by deletions or rearrangements on the q terminal end (long arm) of chromosome 22. The definition goes on, but for most parents new to this information…it takes time to swallow. Proceed slowly. Once in hand, once known, there is no turning back on the New Reality that something is forever shifting away from our original hopes, plans and dreams for our family and for our child.
Before the ‘Knowing’, for me, came Denial dragging along Anger. Naively I assumed this happened elsewhere and to others. Perhaps ignorant, perhaps somewhat entitled, when my landscape shifted beneath me and our family as our child fell farther and farther behind on the developmental milestones, I hoped the delays were caused by his difficult birth and entrance into life. I hoped he would catch up. When my hopes did not manifest, I let the Anger protect me from knowing too much too soon. Anger was also the result of grief and the tremendous sense of loss I slowly acknowledged. Anger protected me from Depression, which was a period of feeling powerless to impact this outcome. The depression sunk me when my bargaining with The Fates, The Divine, with God failed to produce the change I wanted in my experience as a parent. The sweet part of the path came with Acceptance. Once I embraced our garden as bountiful, once I re-organized my definitions of success and once I learned to check in with the neighbors for assistance or to assist them in our weird world, the contentment became the joy in the journey.
The Kubler-Ross five stages of Grief match the phases I experienced as a parent new to the world of special needs. Unlike the Kubler-Ross trajectory, mine has been a spiral circling back on Denial as new limitations or complications continue to come up for our son Davis, the thirty-third child in the world to be diagnosed with The Phelan McDermid Syndrome, a deletion also known as 22q13.3. After twenty-one years alongside my son, I am no expert, just a parent familiar with a path less traveled, one I have written about for years in a manuscript called The Thirty-Third Child.
My advice to any parent new to the Labyrinth of Special Needs would be to settle in fully with each emotion, each reaction, each stage. Not to rush the process because you can’t. If you do not fully grieve the loss of your expectations, this grief will later bite you in the sweet garden of Acceptance because it is a weed left unattended. Personally I liked Denial for its protective shield when I needed it most and even Depression provided respite when I needed a break. The Guilt I could do without, but any parent will have their share of this whether their child is typical or not. I debate Guilt when I can, what do I need to own as my responsibility and what am I taking on because of the way I see others handling their own difficult paths. But it’s the bargaining that eventually empowered me because to bargain is to trust in a higher source. As nauseating as this spiral can be, my ability to trust the process provides me with the capacity to smile as we all continue along in our journey with Davis.
Living is a physically and mentally fragile process, to do it well requires practice. This is something I had to discover as I struggled with Davis’s many medical issues, that it is okay to feel sad about moments that have passed or been lost altogether for a family with a member who has a disability. Sometimes Anger still lurks behind my parental calm when I think back to what we lost. Fear is close beside Anger, a funny pair both regurgitating what has happened and anxiously anticipating what might unfold. To appease the two I remind myself about how Davis takes his day, fully present and without the capacity to be in the future or the past. With his pudgy hand in mine, we might stand by the shore and wiggle our toes in the sea. We might toss a ball back and forth and giggle when we miss catching it. He keeps me here. Davis has taught me how to love and how to accept being loved. His ‘challenge’ helps ground me. His ‘soulful’ eyes help lift me. Still…I need practice.
Reset. Parents know this switch well. Plan for one day and reset the mind, the tasks and the attitude when our children need attention. Today this happened at 6:40 am when Davis seized, his knees slowly buckled before he rolled backwards to the floor, his butt and then his head hit the wood…all one hundred and thirty pounds. Thud. Within an hour it was apparent that our day required a full reset. I cancelled plans, his and mine, and tried to coax him to eat. Eventually I helped him back into his room to let him sleep. Without words, he can only show me how he feels and his eyes sought his bed. He slept a few hours, lethargically restarted his day and we are doing at one o’clock what he would have been doing at seven, getting ready for our day. His world is simple, and today mine is too. Just wish I could remember to hang with him when he’s not sick with the same purposeful presence that I do when his body demands my focus to help him heal. Another opportunity to learn ‘reset’.
Good judgment and wisdom come with age and experience. A parent new to the world of disability or special needs lacks both unless they have been down that road before. We enter that chute unprepared. The capacity to parent a challenged child must be created.
“How are you doing?” The questions arrive in pairs, “How is everyone?”
The Thirty-Third Child 