Additional Needs

5 Things this Special Needs Mom Will Never Say

Posted by Faith, Hope and Love on 27th April 2015 Additional Needs, Advice & Support, Disabilities

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There are absolutely no blessing in my daughter, Bethany, having had a brain tumor nor are there any blessings in the disabilities she has acquired from complications during the surgery required to remove it.

Granted, I do believe it's true that having a child with a life threatening illness has taught my family the things that are most important in life.

I'll be the first to admit that some good things have happened to us that never would have happened if Bethany had not gotten sick.

Because of Bethany's illness people who would probably otherwise never have chosen to bless us have become huge blessings in our lives!

Yet even so, to say that my precious daughter's suffering through months of excruciatingly painful cancer treatments, living with daily debilitating seizures, and enduring the emotional torture of having a difficult to control behavior disorder would be an incredibly unloving and cruel insult to her.

I wouldn't cure my child even if it were possible

Sadly, I've heard many parents say this.

They believe that taking away their child's disability would be taking away their identity or the essence of who their child really is. If your child is truly happy and not suffering physically or emotionally in any way from their disability, then I certainly have no problem with that!

But my daughter has suffered the unspeakable tortures of brain tumor treatments. She still suffers with physical pain and suffering from having seizures every single day.

She suffers the emotional turmoil of sometimes not being able to keep herself from hurting the very ones she loves the most and she battles with the side effects of several seizure medications bombarding her brain every single day.

If a doctor told me today that they could cure brain tumors and cure Bethany of her seizure and behavior disorder right now, you better darn well believe I'd take them up on their offer in a New York minute.

What kind of a parent would I be if I could relieve my daughter of her pain and suffering but chose not to?

God has never given me more than I can handle.

I am reasonably certain that I've been given way more than I can handle many times over already.

I can assure you that standing by while helplessly watching my daughter suffer for fifteen years has been more than I can handle.

Seeing my daughter lying on the couch in a seizure stupor, unable to participate in normal, everyday activities that most people take for granted nearly every single day of her life for years on end has been more than I can handle.

Seeing my daughter disappointed yet one more time because seizures have prevented her from participating in an activity that she has been looking forward to has been more than I can handle.

Worrying about what will happen to my precious, beloved daughter when I am no longer here to care for her is more than I can handle.  I know that I have been given more than I can handle during the many times I have felt utterly alone, helpless, and hopeless and all I wanted to do was crumble to the floor in a crying heap.

My daughter's disabilities are God's Will.

God may well have allowed my daughter to get a brain tumor and become disabled for reasons He only knows, but I can't and will never believe that it is His will that she or anyone else becomes seriously sick, disabled, or suffers in any way.

I may never understand why Bethany has been asked to suffer in such a dreadful manner or why God did not prevent it from happening, but I absolutely must believe that someday I will understand why, that it will all make perfect sense to me, and that it will have been for some grand and noble purpose.

I give up. 

Though it may seem at times that there is no hope of Bethany ever having a life free of seizures and debilitating disabilities,

I will never give up hope or searching for that one elusive medication, treatment, or therapy that just might set her free her from all her pain and suffering.