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10 Simple Ways People Rocked My Special Needs Parenting World

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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 Esther 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 my daughter Alyssa got sick, another Old Testament story has resonated with me though.

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

Other relevant stories:
Does Epilepsy Go Away
What Are the 12 Types of Seizures
What to Do When Someone Has a Seizure 

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 — it’s 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, 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 they have anything to offer.

That could not be farther from the truth.

As I reflect back on the past two years, I remember many times when I felt like 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 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 they were praying for me.

It was my mom sitting with Alyssa so 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 balance out my brain.

It was the people who gave my boys grace because they understood how hard it is to watch their 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.

What I want you to notice is that few of the things I’ve listed are world-changing actions, but they were slivers of light in an otherwise dark time. They cost their givers 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 battles. I don’t need you to have all the answers or the perfect plan. I just need you to stand beside me sometimes and hold my arms up.


This post originally appeared on Mom with an Asterisk.

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Originally published: May 13, 2015
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