Wednesday, May 20, 2015

I'm Not Dancing

   If you ask adoptive mothers about things people say that make us roll our eyes, remarks about how lucky our children are to have us will always make the list.  We argue that we are lucky to have our children and it is not the other way around.  My kids are not lucky to have been so abused and neglected that they required an entirely new family.  However, I still recognize that Alyssa’s life and medical care would be much different if she still lived with her birth mother.  It is likely that she would not receive many of the services and treatments that I have advocated for.  It is likely that her first family would not be able to devote the resources needed to have her in an appropriate school or be able to focus on her health in the way that we are. 

   Those are uncomfortable thoughts. Alyssa is a child worthy of every treatment, therapy or resource that can help unlock her potential.  She deserves that, no matter who her family is, just like every other child does.  The fact that she is now my daughter does not imbue her with some special status that now qualifies her for a better outcome, or at least it shouldn’t.  She is valuable because she is valuable because she is valuable.  The end.

   I believe that all children are valuable and precious and worthy of the best medical care.  I believe that when kids get sick, it is our responsibility as a community to work towards healing and treatments that can at least improve their lives whenever possible. When it comes to children, demographics, family economics and specific diagnosis should not matter.  Unfortunately, this week the Texas legislature showed that they prioritize some patients over others and believe some conditions are more worthy of treatments.

   A bill legalizing medical marijuana, in an extremely limited form, is on its way to the governor’s desk.  I absolutely believe in legalization (as I have written about here) and I should be celebrating.  I am not.  First, there are many holes in the law that passed.  (You can read a great article about that here.)  It is poorly written and does not allow different ratios of THC, which are often needed to treat patients effectively.  Still it is a first step.  What bothers me more is the implication that my suffering child is more worthy of treatment than someone else’s child because of her diagnosis.

   This law explicitly states that only CBD oil is allowable and only for people with intractable epilepsy.  If you don’t know, medical marijuana has been a game changer in the world of epilepsy.  For the 30% of patients of who are not able to control their seizures through available medical treatments, this plant has been a godsend.  It has provided hope to families fighting epilepsy that had no hope before and it has effectively worked when nothing else has. At the same time, the movement towards legalization has also brought unprecedented awareness to epilepsy and our fight for a cure.

   Medical marijuana has also helped veterans with PTSD gain control of their symptoms and live normal lives.  In other states it has been used to treat kids with Crohn’s disease or multiple sclerosis.  Although the research is still in its infancy, due to archaic federal laws, even some people with autism seem to show improvements when treated with different ratios of CBD and THC.  Medical marijuana also works wonders for many people battling cancer.  Yet somehow in the movement to gain treatment for our own children, we decided that all of those patients were somehow less worthy of treatment because they carry a different label than our kids. 

   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.

  I should be dancing because we finally have some semblance of legalization.  I am not.  Instead I find myself very conflicted.  I am angry that politicians were so busy fighting about another bill that they did not vote on the comprehensive medical marijuana bill.  I am sad that many of the marijuana refugees will still not be able to come home.  I am frustrated the current version may not be broad enough to create the infrastructure needed for us to actually have access to the plant we so desperately need.  I am heartbroken that a gain for Alyssa does not equate to hope for my friends whose children are also facing life-threatening diagnoses. I am hopeful that when the politicians realize that limited legalization does not lead to the fall of civilization as we know it, they will come together and create a more comprehensive set of medical marijuana laws.   I am hopeful that this small step leads to more.  I am hopeful, but I am not dancing. 

Tuesday, May 12, 2015

I’m a special needs mom and I need you to hold my arms up.

   When I was a little girl, my mom and I would get up early most mornings to read the Bible together.  I always loved the stories in the Old Testament of battles and heroes and romance.  I pictured myself as Ester speaking for her people, Deborah leading the armies into battle or Rahab saving the spies.  In my daydreams I was the Biblical version of Wonder Woman, stepping up and saving the day when the men failed to get the job done.  These days I’m too tired to play warrior princess.  Since Alyssa got sick, there is another Old Testament story that has resonated with me though. 
Alyssa is 6 and has PCDH19 Epilepsy

   In Exodus 17, we read a story about a battle that the Israelites fought with Amalek.  In this particular battle the Israelites prevailed so long as Moses held up his hands but he grew tired as the battle raged.  As his weary arms started to sink, the enemy grew stronger.   Seeing this, Aaron and Hur found a rock for him to sit on.  Then they did something that changed the course of the battle.  They stood beside Moses and they held his arms up.

   Parenting in general is hard work but when a child has special needs it can start to feel like an impossible task.  There are so many appointments and emergencies and daily trials that it is enough to make your head spin.  Ironically, as the world implodes and we need help the most, many special needs parents find their support systems dwindling.  Some people choose to abandon us because our new lives don’t fit their sense of perfect.  Some shrink away in fear that our tragedy might wear off on them.  I honestly think though that most stand back because they don’t know what to do.  In the face of what seem like insurmountable obstacles, physical challenges and emotional devastation, they simply don’t believe that they have anything to offer.  That could not be farther from the truth.
Alyssa hanging out in the hospital in March 2013
    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.

It was the small town pharmacist who saw us adding yet another medication and took the time to ask if I’m ok.
It was my MMA instructor doing an entire class of just punching the bag because I was too raw for anything more.
It was the time at work when I broke down and every woman in my office stopped what she was doing to hold me while I sobbed.
It was random text messages from people saying that they were praying for me.
It was my mom sitting with Alyssa so that I could sleep for a few hours after being awake at the hospital for days.
It was our brand new babysitter being willing to keep Alyssa even on bad days so I didn’t have to quit school.
It was the other mothers in a Facebook group who understood the true intensity behind a simple post of “I hate epilepsy” and offered their virtual support from around the globe.
It was the friend who let me take off the mommy hat for a little while and talk about school or clients or some other gossip that helped to balance out my brain.
It was the people who gave my boys grace because they understood how hard it is to watch your sister fall apart.
It was the teacher’s aide who gently held Alyssa as she crossed the stage so she could still receive her pre-k awards last year after seizures left her disoriented and unstable.
Christmas 2014
   What I want you to notice is that few of the things I have listed are world changing actions but they were slivers of light in an otherwise dark time.  They cost their givers very little but meant the world to me.  There was no special skill or expertise required, only the willingness to stay when our life was anything but pretty and we were too depleted to give anything in return.

   The truth is that you usually don’t have to do anything extravagant to support the special needs parents in your world.  I don’t need you to fight my battle.  I don’t need you to have all the answers or the perfect plan to win the war.  I just need you to stand beside me sometimes and hold my arms up.

My partner in crime.