Putting Panic in My Heart

Recently I heard about a movie on Netflix called "Asperger's are Us". Though there is no longer an official diagnosis for Asperger's according to our developmental pediatrician, she let me know that Seraphina is considered "high functioning" autistic which was once also known to be Asperger's. I thought this movie would allow me to see where my daughter was headed and how her life could be "normal".

As I tuned in, kids set up with dad watching their own movie I began to feel it. I had a burning sensation in my stomach and it wasn't heartburn. As I listened to the grown men talk, I heard the "autism accent" which so many have said that Serrie has and I wanted to cry. I felt my hands twisting around each other and soon I couldn't stop the feelings I had welling within myself.

I have many friends who are amazing and have chosen to adopt children with special needs and I always said when we were pregnant we were "praying for healthy but hoping if it wasn't healthy we would have the strength to do the best for our family". In truth, I said that to be politically correct. We never had any genetic testing and I tried to pretend that I knew God's will was what was best for my family. As I watched though I wondered.

Just a few days before, I lay in my guest bed next to my mom explaining how God messed up. She reminded me that He gives us nothing we can't handle and I looked her square in the eye and said "he picked the wrong girl".

Living this life with autism isn't something we chose. We did not choose to get into this with open arms and to be honest, sometimes I want to stand arms crossed, pouting and stomping my feet. My daughter is developmentally disabled. This means her life isn't the life I dreamed for her. I have had to mourn the child I imagined. I have had to weep over the missed friendships, the lost proms and perhaps even the non-existent weddings. I have also had to mourn for my other children, for what they have had to face. Their sibling running on fields or courts to "play" sports with them. I have had to watch as the invitations to do things as a family have dwindled and now become almost non-existent. I even thanked a family profusely this summer for including Serrie in their Labor Day plans because it meant they wanted our family, our whole family for who we were and it was okay.

I think I envisioned my reading, understanding and willingness to work would in fact take much of these difficult moments away but in fact, it hasn't. It didn't take away Christmas Eve when I missed the pageant that my oldest three were in because Serrie couldn't make it. It didn't take away the inability to sleep after a late afternoon nap and it won't take away the challenges we face moving forward. Education IS power but it isn't a magic tool that will erase the disability my daughter faces.

That being said, today I am in a bit of a panic. I thought this movie would bring peace but instead it brought fear and more questions and in a way that is okay. It allows me to understand that this journey isn't just a short race, its a marathon that is leading us to be better people.

I am grateful for the men who did the documentary and put themselves out there, how I wish I could talk to them so I could understand how to be a better mother for Seraphina and give her what she needs to grow and be the best person she can be. I wish I could understand so I could be a better advocate for Serrie, others like her and also for my other children struggling to understand and know exactly how this disability will affect their lives.

Today I am panicked. I know it won't last forever. I know I can choose to allow it to weigh me down or I can choose to use it for good so today I will allow it to put fire under me and use it for good because that little blessing who lays beside me eyes wide open unable to sleep is someone who may be challenging me, she may be teaching me and she may be begging me to be a better person than I was before she entered my life.


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