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.
epilepsy miracle
Alyssa has PCDH19 Epilepsy, a genetic disorder that causes seizures, as well as cognitive and behavioral challenges

 

   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.
special needs parent
Alyssa hanging out in the hospital in March 2013

It was the small town pharmacist who saw us adding yet another medication and took the time to ask if I’m ok.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 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.
 special needs parent
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.

 

special needs parent
My partner in crime

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