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.
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 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.
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.
As I reflect back over the past two years, I remember many times when I felt like I was Moses, alone on a mountain, growing weary of the fight. There were moments though, when people came beside me and helped me bear the load. In small acts of kindness, friends and strangers came along and held our arms up.
A year without seizures is a huge milestone in the world of epilepsy. Ironically, it is also terrifying. If Alyssa maintains her streak over the summer, then in the fall we will start to slowly wean her off of at least one of her medications. I have a love / hate relationship with those medications. On the one hand she takes large doses of mind altering drugs every day with a whole slew of side effects and an undetermined impact on her development. On the other hand, those drugs are keeping her alive.
Alyssa was a foster child who legally belonged to the state and people of Texas. When Alyssa was abused, the state stepped in to protect her because as a society, we believe that it is our obligation to care for our children when they need us. When we refuse treatment that could give an innocent little girl a chance at normalcy and life without seizures or side effects, we are denying our responsibility to her, and other sick children in our country.