I don’t believe that everyone has to be a winner but I also recognize that not everyone is playing the same game. I’m not asking that Alyssa be given some patronizing certificate simply because she has a disability. However, I think that it is time for schools to recognize that different kids have different goals and they should be recognized for achieving them.
It is always complicated for my kids when they see their biological family but we thought they could handle an extended visit with one of their siblings because of some extenuating circumstances. Instead we spent about two weeks in absolute crisis mode as attachment issues reared their ugly heads. I kept my smile on though, at least in public.
If you are the parent of a child with special needs, you are likely very well aware of the divorce statistics for our cohort. Our marriages are significantly more likely to end than our peers with healthy children. It just seems cruel that the disorders that try to steal our children attack our marriages too. The truth is though we can experience stress levels similar to those of soldiers in combat and that puts strain on even the healthiest relationships. Our marriages aren’t doomed though. We just need to understand what we are facing and protect our relationships while we weather the storm.
I stood in the aisle holding those little shoes and flashed back to the exploited little girl who came home to me four years ago. I tried them on Alyssa then took them off, disappointed that they fit. When my husband returned from his wandering, I showed the shoes him, expecting an equally distraught reaction. I hoped that he would at least think that she was far too young to be prancing through the church in half inch heels. Instead he questioned whether she would fall wearing them. I explained what the shoes represented but they didn’t mean that to him.
Today is the two year anniversary of my life as Humpty Dumpty. On December 11, 2013, I stood in a WalMart parking lot and answered the phone call that changed everything. That was the day that I broke.
I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems. I relate to adoptive parents too but our story isn’t just about adoption anymore. I switch back and forth between groups depending on the support I need at the moment.
I recognize that look in your eyes. It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream. Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures. Maybe you are feeling broken having just received your child’s diagnosis. Maybe you are ready to curl into a ball and hide because it all feels so overwhelming. I’ve been there. I’m still there sometimes.
Family and love were foreign concepts for my daughter when I met her. She had been bounced around between unhealthy homes and shelters. She had experienced loss and hunger and absolute fear. She had no reason to suspect when she came here that our home would be any different. Even after our adoption, Alyssa would ask several times each day if I was still her mom. She does that less now but that fear of abandonment still rears its ugly head sometimes when she gets in trouble and she goes back to being the scared little girl who believes no one really wants her. In those moments she occasionally asks if I will still be her mom as if I might disappear while she takes a timeout in the corner. “Always and forever” I tell her. “No matter what you do, we are family and family is forever.”
Many parents of kids with epilepsy are passionate about the push for medical marijuana because we understand the cost of every delay. Our children are dying while they wait for legalization. We have lost several children to seizures while they waited for their last hope to be approved by politicians who were more concerned with their own agendas than in letting us have access to a lifesaving plant. That is devastating and unacceptable. It is equally appalling that we would deny other parents the chance to save their children.
