Sitting in the sound-proof room for the hearing test, I repeatedly glanced at the vent on the wall to remind me that there really was air flowing into the room. With a ceiling just over six feet tall and a floor space of not much more, it didn’t take imagination to feel like the room was closing in.
Having finally submitted (after a long struggle) to wearing headphones, Chase sat on my lap, waiting as he had been instructed to put a piece of the puzzle into place every time he heard a sound.
A high-pitched noise rose muted from the headphones – as loud as a scream in the quiet room.
Chase sat unmoving. He heard nothing.
The sound came again – this time, louder.
Still…nothing.
It’s hard to describe the sadness…sitting there, hearing a noise that he should hear and letting the knowledge sink in that he did not hear it. There are moments that I fight guilt for feeling this sadness. After all, my child is alive. Seven months post diagnosis and he lives and breathes! How dare I feel sad? But I do. Observing these “collateral damages” of the cancer and treatment are intense and challenging even though we fully acknowledged the risks involved many months ago.
Finally, the tenor and volume of the sound changed and Chase immediately sat to attention with a gasp and practically threw the puzzle piece onto the board. He had been waiting a long time for the sound.
After the test was complete, they showed us a paper with a graph – a gray bar along the top of the chart. Pointing to the gray, the tech explained “This area here is considered ‘normal’ range…” and as she continued on, I studied the graphed lines – not a single part of which were in the gray. I answered the questions as they came: yes, we had noticed his hearing was bad, yes, he does struggle to form words…
Yesterday, we met with more doctors and confirmed that there is most likely damage from tumor and treatment, but there is also a lot of fluid (a common problem from radiation). It was decided that it would be in Chase’s best interest to have a minor surgery to drain the fluid and put in tubes. It may not restore his hearing, but it will hopefully improve it and at least give the doctors a more true idea of what his hearing range is.
As admittedly silly as it sounds, I had hoped and prayed the the solution might be non-surgical, but that wasn’t meant to be. As we processed this news yesterday, the words to a favorite song came to mind: “Whatever my God ordains is right, in His love I am abiding. I will be still in all He does, and follow where He is guiding…” conluding “He holds me that I shall not fall, and so to Him I leave it all”.
With these words fresh in our minds, reminding ourselves of God’s perfect plan for Chase and clinging to the promise that we will not fall, we press through these sad side effects. After all, as I was lovingly reminded by a dear friend:
“Chase does not need perfect hearing to hear the voice of God.”
Moment by moment.
[Surgery date is set for Monday, March 25th as Chase will be in the operating room already for a lumbar puncture and chemo]
My dear Ellie, Bob, Chase and family: as long as I live I will NEVER forget your experience and the many ways that it has humbled me. Over and over and in so many ways this has been the case. I believe that every experience that one has effects many others, like a ripple effect, some huge, some not.
But: nonetheless, we are all one with God and when you hurt, I hurt, and your humanness is why God loves you so much. what a valient child, and I
will continue to include him in my thoughts and prayers. as far as I am concerned, Chase is perfect and complete. Be with God, as you know, HE IS with you. love, maralee
Ellie, I am thankful for your honesty in your struggles and for the humility it takes to share them so openly. It is a testament to what God is doing in you and through you. And I am so very proud of you, dear girl, because I see the beauty that He is producing in you through all of the ugliness of this suffering. I am repeatedly convicted and inspired by your thoughts and words. I never read a post without weeping for you and your family because of the grief you all must endure. Sorrow isn’t a sin; it is a shadow in the valley of death. Jesus was a man of sorrows and acquainted with grief even though He knew what the final outcome would be. You needn’t ever feel guilty for being sad. I pray for comfort, strength and grace for you and your family, and also for that impossible joy that walks beside sorrow.
Judy, thank you for your encouraging and thoughtful words. We are truly sustained by the Spirit…and all those who walk by us…holding us up, weeping with us, rejoicing with us… so thankful!
Ellie, you are a strong strong mommy for that precious little Chase, enduring all he is. Quote Joshua 1:9 “Have I not commanded you to be strong & courageous, do not be terrified, do not be discouraged, for the Lord is with you wherever you go”. I spoke to a very special friend and shared Chase’s journey with her, she quoted this passage as it is one she repeats often! Love, Jolene