Reminding Myself to Breathe
It’s been so long since I have expressed my deepest feelings on paper.
Maybe it is the hectic environment in which I live, maybe it’s the denial that splashes my mind every morning, or the guilt that is seeded deep within me.
Uncertainty is my demon that gnaws away at my confidence to parent the way I need to.
It is difficult to grasp the concept of my everyday jealousy of ‘normal parents with normal children.’
Our life is anything but. Some days my life consists of washing smeared feces off the carpet and wall, or feeling numbing bites from my beautiful child who can’t verbally communicate her frustrations.
It’s the constant monitoring of heavy duty drugs like clonazepam.
My Aspen started having seizures at 4 and a half months old. Every seizure I witnessed the pain and worry of what part of the brain was being damaged.
Every. Second. Of. Every. Seizure.
My hope was being shattered.
At first my Aspen hit every developmental milestone. She started talking and would put two words together.
Then at fifteen months of age, she regressed and she stopped talking.
My God, how I wish I would have video-taped her first words and sweet raspy voice when she would speak those words, I now only can hear them in my dreams.
I struggle when the world gives me glares and watch as she flops down on the concrete just to feel the texture on her face. They have no clue.
Autism is messy, it is painful, it can shatter a whole family. We rely on faith and taking things minute by minute.
Sometimes I have to remind myself to breathe and allow the tears to flow while I give my little Aspen a tight squeeze and allow her to hold me while I mourn the loss of a ‘normal’ life for her.
Written by, Erin Maser
I am a mother of four beautiful girls ages 13, 8, 7 and 4. My youngest just happens to be nonverbal autistic epileptic. I am a Title I Elementary teacher in Wyoming. You can follow our story on our blog at Keep room in your heart for the unimaginable.
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Your family is so beautiful. Our little is 3.5, mostly nonverbal, and until very recently- epileptic. I hate to even mention it, as so many things have been mentioned to us over the past 1.5 years to try…I am sure you are familiar with those conversations…..but we recently decided to try diet therapy (Modified Atkins Diet, a version of the Keto Diet) guided by a nutritionist and for the first time in 10 months, our girl has been seizure free for almost 12 days–and she used to have them every. single, day. 12-40 a day. Now, no meds (she had tried and failed 5, various combinations, and we were being pushed to consider brain surgery). I know it may not work for every person, or be feasible for every family, but I had to share. A book called “Fighting Back with Fat” became like my bible for a while–written by parents of kids with drug resistant epilepsy/easy to read and understand. Sending you loving kindness and a huge virtual hug.