*A version of this post was originally published on 9/28/12.
Our battle with Bethany’s seizure disorder often seems hopeless.
My husband and I are literally helpless bystanders in her battle.
Somehow we’ve managed to hang onto a little hope throughout our ordeal.
I’d like to tell you how.
When Bethany has a seizure, other than administering rescue medication or going to the emergency room there really is nothing we can do to help her.
We have spent many years traveling up and down the east coast trying to find a doctor who would have a miracle cure for her.
We’ve even been to Boston Children’s Hospital, a #1 hospital in this country for Neurology, only to be told that there is nothing left to try.
We have gotten our hopes up many times only to have them dashed to pieces just as often.
Yet, somehow we’ve managed to hold onto a tiny measure of hope for her!
Recently, a new doctor in our Neurologist’s office took over Bethany’s case.
He had been looking over her records and became (in his words) alarmed and upset.
He was astounded that she could be living so long with daily uncontrolled seizures!
He told us that according to her last EEG she is literally having seizures ALL THE TIME!!!
Of course, we weren’t really surprised by that revelation because we see her having seizures every day!
After conversing with this doctor, my husband and I felt hope growing again, because he seemed genuinely certain he could help Bethany, more than any of her other doctors ever did!
Maybe, just maybe there is something else we can do to end our daughter’s pain and suffering!
But before he can recommend a new treatment, Bethany needs to cooperate with doing a 72 hour video EEG.
She must keep the electrodes on long enough for her to have a few seizures.
This doctor wants to help us so much that he has been willing to bend a few rules for us to try to make this procedure as quick and as easy as possible!
Rather than scheduling the procedure and hoping we catch a seizure, he is allowing us to call the next time Bethany shows signs of an impending seizure cluster.
Then he will admit her.
No other doctor has ever been willing to work with us in such a way before!
Maybe just maybe….Hope!
I believe that God places hope in each of His children.
Hope is in our nature.
It is human nature to keep trying, to keep going, to never give up, to keep hoping for something better!
We may not see a cure for Bethany here on earth, but we are filled with HOPE because we KNOW that someday she will be healed!!
We have hope because Jesus gives us this hope!!
*Update: 6/6/17- After that EEG, which we were able to catch many seizures during, the doctor prescribed a new medication for Bethany. She has not had a tonic clonic (grand mal) seizure since then! She does still have some simple partial seizures from time to time, but her quality of life has greatly improved!
2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
Jeremiah 29:11 For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.
1 Peter 1:3 Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead,
Romans 5:2-5 Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.
Romans 8:24-25 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.
Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.
Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.
Hebrews 11:1 Now faith is the assurance of things hoped for, the conviction of things not seen.
All Bible verses come from :What Christians Want To Know
Even in the inevitable moments when all seems hopeless, men know that without hope they cannot really live, and in agonizing desperation they cry for the bread of hope-Martin Luther King Jr., A Testament of Hope
Hope just means that another world might be possible, not promised, not guaranteed. Hope calls for action; action is impossible without hope- Rebecca Solnit, Hope In The Dark
*Update: 6/6/17- After that EEG which we were able to catch many seizures during, the doctor prescribed a new medication for Bethany. She has not had a tonic clonic (grand mal) seizure again! She does still have some simple partial seizures from time to time, but her quality of life has greatly improved!
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