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“Thump...thump....thump” my son is heard clumsily running across the hardwood floor of our living room. Within seconds a lump creeps into my throat as my heart is filled with anger, “Damn it, another seizure!” I often wonder if it is harder to experience the seizure or watching, painfully wanting to make them stop, aching inside wishing it could be me, not him.  

The color of life drains from his face. Shoulders drawn in, elbows bent, hands wringing, at five feet five and one hundred and forty pounds, I have to brace myself as his body moves on auto-pilot knocking into me. Reacting to him has become automatic. Inside I’m falling to pieces. Exuding strength so he will know it will all be OK, I wonder if this will be the one that won’t stop.  

Family, friends, and society understands how difficult parenting is for us all. Only a select few of us are deemed deserving of parenting a child who is affected with tuberous sclerosis. Bravely we let our child be a pin cushion, sedated, x-rayed, utrasounded, as well as medicated beyond dosages that would drop an elephant to its knees. The agony of subjecting our child to these experiences may be more traumatic for us parents. I don’t remember signing up for this. Did I get in the wrong line? I intended to become a loving dedicated parent to a “regular” kid.  

Looking into my son’s big brown eyes - which he got from the Paw-Paw he never met - gives me strength I never thought possible. Pulling him through one seizure at a time doesn’t feel like enough, but it is all I can do.  

Being a parent means that I will forever feel incompetent. I will always wish I could take this disease from him and put it on myself. Measuring myself against the “perfect parent” I will forever fall short. Measuring myself against my son’s needs, I pray that he will forever believe I did what was best for him. Masking the pain, fear, and anger that I feel towards tuberous sclerosis is a task I take seriously. Never for one minute do I want my son to feel that I don’t know what to do to make things better, or for him to see me confused by this damn disease that daily alters his life.


Member Comments

    • 0 votes vote up vote up

      Greenfriend wrote Oct 19, 2008
    • I feel your pain....because my 5 year-old has tuberous sclerosis as well. Although Adam does not have  full-blown seizures, we know that he has partial ones.

      The future is so unknown, but I am hopeful that there will be a cure soon. Stay strong....

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