My Autistic Brain Tumor Survivor

Finding Hope in all this Hopelessness

*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.

EEG, finding hope, seizures, epilepsy, hope, hopelessness, chronic illness
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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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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at not extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

 

Be sure to visit Bethany’s Business, our store full of special needs family products and special needs homeschooling resources! All commissions go toward providing a better quality of life for Bethany! Thanks!

 

 

 

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0 Comments

  1. Janet Jones

    So glad there is a possible light at the end of the tunnel. We too will be praying that Bethany will coperate. Don’t worry about what people say about your parenting skills. I know that is not easy! They have never gone through what you are going through. They just need to keep their mouths shut till they do. Keep looking to Jesus and hoping for a miracle. Blessings on you and your precious family. Hope you have a good day today inspite of what it might bring.

    Reply
    1. mommasylvia (Post author)

      Thanks for your prayers and encouragement Aunt Janet!

      Reply
  2. Big Daddy!

    When you’ve got nothing…………hope is bigger than life. I’ve never been unwilling to hope………it keeps us alive in small doses. It’s the only bread on the table.

    Reply
    1. mommasylvia (Post author)

      Sometimes hope is all we’ve got!

      Reply
  3. caffieneplease

    I’m so happy to hear about your new doctor!!

    Reply
  4. Homegrown Learners (@marymakesmusic)

    Oh, I’m so grateful for this new hope you have… God bless you! I’m praying that everything goes well and you can maybe get new answers. Wouldn’t that be a MIRACLE?

    Reply
    1. mommasylvia (Post author)

      Thanks so much for your continued prayers!

      Reply
  5. Dawn

    I am so glad you have a new doctor. I hope this one holds the answers.
    Blessings, Dawn

    Reply
    1. mommasylvia (Post author)

      Thank you Dawn, I hope so too!

      Reply
  6. handimouse

    There is a line from one our favorite movies (Galaxy Quest) which is so appropriate when dealing with a disability … “Never Give Up …. Never Surrender” … You never know what door will be opened for you … Keep moving …

    Reply
    1. mommasylvia (Post author)

      Good encouraging words! Thanks!

      Reply
  7. Michy Loving Our Journey

    as you quoted above with that nice picture, God is hope….prayers and blessings-

    Reply
  8. Jacqueline @ Deeprootsathome.com

    I am praying for you dear Mama and for your family! I don’t know how you do it, but I do know your faith in our Lord is holding you all up! May you find greater and greater peace and joy as He carries you through each day! May His grace and HOPE abound to you!!

    Reply
  9. Stephanie Allen Crist

    Keep hoping. Doctors and researchers are still making advances, and maybe all it will take is having the right doctor, inspired at the right time, to find something that can make a big difference–and this one might be the one.

    Nevertheless, when all man can do fails, God is still in control and His plan is much longer, deeper, and more certain than we can understand–yet.

    Reply
    1. mommasylvia (Post author)

      You are so right, Stephanie! Thanks. I value your support and wisdom!

      Reply

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