Hope can be hard to cling to when our children with special needs face challenges we can’t fix. Today, new guest blogger Sylvia Phillips, explains how she finds hope again and again while parenting daughter Bethany.
Hope Springs Eternal
When our daughter, Bethany was diagnosed with a very large brain tumor in her very small cerebellum a few years ago, my husband and I naively assumed that once the awful mass was removed she would be fine and our lives would pretty much go right back to normal. We certainly were not prepared for all the events that would eventually take place that would prevent our family from ever going back to normal. Events that would force us to develop a new normal. Our new normal.
Bethany and I spent two months in a hospital far away from home. She experienced and endured numerous setbacks, life-threatening complications, and various forms of treatments and procedures which really resembled and felt more like torture than actual medical treatment.
Now nearly thirteen years later Bethany must cope with multiple disabilities, but perhaps the worst damage caused by the tumor has been by far her ongoing battle with the uncontrollable and severe seizure disorder that plagues her.
On the Brink of Hopelessness
Until recently, Bethany has endured near daily attacks of seizure clusters. She has suffered extensively with medication side effects and overdoses which have confined her to the couch in a dizzy daze for most of her life. No medications would stop the seizures.
I have often found myself on the brink of hopelessness. No magic pill, surgery, or device was going to stop Bethany’s seizures. I so desperately wanted her to have a happy, healthy life. This kind of existence–being medicated into a stupor and seizing more often than not was no life at all.
A Life Worth Hoping For
Recently Bethany began taking Onfi, a new seizure medication, she didn’t have even one seizure for six months! A happy and energetic new Bethany emerged. She was able to enjoy her life once again!
Sadly, just the other day the seizures reared their ugly heads again.
But hope springs eternal. I believe it is in our God given natures to continue hoping even when all hope seems lost. It is in our very natures to hope for something better. It is human nature to continuously strive to triumph over adversity. We can’t give up. At least I can’t.
I desperately cling to the hope that someday, somewhere, someone will find a way to stop Bethany’s seizures… forever.
I desperately cling to the hope that even if Bethany never stops having seizures here on earth…someday she will suffer no more.
My hope is insatiable. I can’t give up. Without hope life is no life at all!
Rejoice in hope, be patient in tribulation, and be constant in prayer.
Now It’s Your Turn
Where do you find hope when you can ‘t fix your child with special needs? Leave a comment. To read more about Sylvia and her family, visit her website, Learning and Living with our New Normal.
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