What is and what will be.

>> Thursday, May 26, 2011

All these long months have merged into a routine, into the same long days repeating themselves. Seizure after seizure, phone calls to Doctors and Nurses and appointments and disappointments. The isolation and the resentment is pervasive, it is always there. I am constantly being reminded at the park, at the grocery store, watching other children play and taking his sister to her first party. Something, he may never do. And the sadness at all things he will, most likely, never do, takes over and the melancholy achieves, what feels like a strangle hold.

Like most Mother's of a Special Needs child, I resent hearing complaints about normal childhood things. I hear a Mother lament about her child's vomiting and I think: Ha! Thats an easy one. But it isn't, not for that Mom, it is not something that she was expecting at that moment. And although I know of NO Special Needs Mom that doesn't expect a pointless round of mystery illness on a daily basis, I have to remind myself that it's not a competition.

I wonder, will he ever play ball outside with his friend? Or will he ever have friends? Will he ride a bike and skin his knee? What will his life hold for him? Will he ever know how much I have ached for him, how much I have fought for him, the countless hours I have laid awake listening to him breathe? Will he ever say: I love you Mom? And regular Mom's think these things too. Only their answers are usually set...the answers to those questions are almost always yes. And I must reconcile this. I must stop thinking that my son deserves any more attention than any other child based on our foray's into society. No one will treat him differently unless I make them, and how can I make anyone do anything they don't want to do? Some people just can not think of anything, or anyone that they consider to be beneath them, or that they consider to be abnormal, or that is not their own offspring. It hurts more that he is overlooked, and stared at, and laughed at, and completely ignored. It hurts my heart more than I have ever been hurt before.

And I thank all that is that he does not realize that there is a difference.



2 comments:

falvesjr May 26, 2011 at 7:25 PM  

These are trying times indeed... Clel isn't doing very well these days and I'm sad and tired. I wish I could come see you guys... Missing you much. Love you.

Nett May 26, 2011 at 8:15 PM  

Oh dang, sorry to hear about Clel. Big hugs to you and Nancy. Anytime you can visit there is a room with your name on it. Love to you!

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Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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