Can we really already be out of options? Is this really all we’ve got?
Reality is seeing the school bus drive past our house and then wondering if Olivia will even reach school age. It is living life in monthly increments, enjoying our longest stretch with no lab work since diagnosis, but also knowing that the next time a needle slides into her arm, that vial of blood and the hours that follow might literally contain my greatest fears realized.
Reality is looking in the mirror and seeing a hurt that has aged me beyond my years. Knowing that time can not erase one iota of the pain as it merely settles deeper in my bones. After 33 years I often do not recognize myself. I feel as though, at all times, I am waiting for something to happen.
Reality can be so very hard.
When the unthinkable happens and the grief is greater and the burdens somehow heavier than before. If you’ve ever experienced a traumatic life changing event, then you know what I mean. There is the before and the after. These defining moments, these deep cuts, they are incapable of healing. They may scar over as time marches away with what once mercilessly ravaged or they may be ripped fresh as that burden of fear becomes realized in a surreal yet familiar sort of horror.
As they have for Olivia’s little friend from the hospital. Her friend, just a few months younger, who sucks her thumb and loves her stuffed dog. Sweet Allistaire’s leukemia is back. It has infiltrated her skin. Her skin. As I read the words written by her grieving mother, I knew what seemed familiar, the sinking and despair; utter disbelief that this should be life for anyone, let alone a not yet 3 year old. The first cut is deep but anyone who knows cancer knows that the second cut is deeper still; and though that fear weighs heavy on my own heart, I do not personally know it. I do not ever want to know it. I simply ache as Allistaire and her family must begin again. My own head spinning at the quickness with which normal routines and comforts cease and life becomes a moment to moment affair; some days just struggling to get through. Grasping. It is all so terribly unfair. Allistaire’s mother is a woman of great faith. She is grace exemplified. I really do admire her and have found her chronicling of their experience to be inspiring. Her words have scraped me off of the bottom on more than one occasion, shining perspective and comfort in the doldrums of disease and treatment and recovery. How someone in the midst of her own confusion and sadness can lift others up…..well, that is a gift.
Please keep them in prayer. Please pray that the decisions made by Allistaire’s doctors are the decisions that will lead to her cure. Pray for peace and light in the valley.
As her mother said, it will be longer and harder this time. The search for a bone marrow donor has commenced. I ask that any eligible person reading this who has not yet registered to become a donor, please do so. You can register with DKMS or Be The Match. It’s easy and free to you. The potential to save a life is very, very real.
This is reality for so many. This and more.
I waffle between wanting to bury my head in the sand and needing to face my fears and worries head on. Ultimately hiding from reality would be like hiding away bits and pieces of Olivia; denying her truth and diminishing the gravity of her experience. This part of who she is. This part of who we all are. The problems swept under the rug eventually surface and they are only messier when they do. It would also make a gigantic hypocrite out of me as I have pleaded to you all to not turn the other cheek, to be brave enough to stand with us. To fight for these kids. To throw money our way in the name of what some say is impossible. And so many that could have turned away from us did not and have not.
So I will keep looking and reading and knowing that though these children hold the enormity of my worry and my fears they also hold my hopes and my dreams. Reality at its most harsh and relentless set out before our most innocent.
As my head has been aching, all day long, these past few days, I realize how much hurting and sadness I am carrying around for this family. And for my own family. My own self. Perhaps it is because I know them, sort of. They are not just pictures or words on a screen. They could be us, as we all lived out this reality behind those same closed doors. I knew Allistaire briefly before chemo took her blonde curls; in that small space between diagnosis and treatment, when everything is spinning out of control. I wondered at her hair when I first saw her in the halls. Hair kind of makes you stand out in an oncology ward y’know? Was she new? Had she relapsed? Was she just visiting a sibling? She was the only other child close to Olivia’s age that I had seen in a while – most others were much younger or older or were living in isolation. Her mother and I marveled at the many similarities between our two girls; mannerisms, appearance, diagnoses. I suppose we may have resembled a frightening glimpse at their road ahead. When bald heads and feeding tubes and IV poles are still unfamiliar things. I remember trying to seem reassuring; explaining that the little ones often do so well with chemo, just as Olivia, sitting happily on her trike on her transplant day, vomited all over the place. Perhaps it is my selfishness, or humanness, that makes their reality seem a more viable possibility down our own road. This thing you cannot run or hide from, no matter how faithful or full of grace.
I have been reminded these past few days that even as reality can become quickly and nearly unbearable, “faith looks up”.That even as the path becomes so uncertain, there is Grace abundant that holds to no earthly bounds. There is Glory to be proclaimed. Beauty in the hurting.
There is hope.
You need only to look up and be reminded that this reality is fleeting.
Earlier today I unpacked a daily devotional that I used to keep next to my bed. I had the following page bookmarked. I guess I needed to see it again on this day.”
“TRUST ME, and don’t be afraid. Many things feel out of control. Your routines are not running smoothly. You tend to feel more secure when your life is predictable. Let me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of My wings, where you are absolutely secure.
When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities . Instead of bemoaning the loss of your comfort, accept the challenge of something new. I lead you on from glory to glory, making you fit for My kingdom. Say yesto the ways I work in your life. Trust Me, and don’t be afraid.”
~Sarah Young, Jesus Calling