Her life as she knew it changed forever when she was 17 and she has faithfully used the crazy hard changes for truth and beauty and just recently, the children and I had the great privilege of actually meeting Joni Eareckson Tada. I watched their faces and they were afraid to get too close lest they hurt her – they have yet to fully understand her wheelchair and it’s reasons – but she smiled at them and encouraged them to come closer and they couldn’t resist her joy.
Do you know her story? It’s real and it’s raw and she’s a hero of mine because she never stops seeking the goodness of God when all the life circumstances are anything but. Knowing her story, listening to her speak, reading her writing – all of it – is such a wonderful reminder that the day for no pain and tears is coming. It is not today, but it’s coming, and God remains faithful while we wait.
Moment by moment.
“There is no circumstance, no trouble, no testing, that can ever touch me until, first of all, it has gone past God and past Christ, right through to me. If it has come that far, it has come with a great purpose.” – Alan Redpath
We sat in the room for almost two hours and dialogued on how the brain works. Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions. The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time. Marvelous and scary.
Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course. We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself. Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.
[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything. This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]
May 2, 2014
Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication. It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!
We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand. Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two. The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…
We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.
Moment by moment.
Hear me, O God, when I cry; listen to my prayer.You are the One I will call when pushed to the edge,when my heart is faint. Shoulder me to the rock above me. For You are my protection,an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings. Psalm 61:1-4 (The Voice)
The shadow has descended again and I’ve found myself unable to write because of it. Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.
Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI. I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known. However, today, I was reminded to open my hands. To relinquish again the dread of the unknown to the One who knows.
So, tonight, I finally sit and write. I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long. I needed this reminder that Chase is not ours to keep. In fact, none of our precious littles are. They are our entrusted treasures and we are their stewards. We’ve gathered them around us in front of the two doors and we wait… with open hands.
Moment by moment.
The earth is the Lord’s, and everything in it, the world, and all who live in it. Psalm 24:1 [NIV]
With his backpack and IV bag preparing to leave in the early morning…
One day down, twenty-nine more to go…
I’ve mentioned before how very much I hate separating from Chase before a procedure and today was no exception. I left my unconscious child in a full body mold in the middle of a huge radiation machine, turned my back, and walked away. With this heavy on me, I cried the whole way back down the hall (much to the chagrin of the nurse escorting me, I’m sure…).
Snug on the ride home; sleeping off the anesthesia
This entire radiation decision feels like a step down the path of destruction. The doctors (and we with them) must tear and ravage his body with everything there is in the hope of once and for all eradicating this terrible thing that is greater still than the near deathly salvation they’ll put him through.
And yet…
I thought again today about the words of Psalm 139 and realized, no, this is not a road to destruction, but to perfection!
I thought I had a healthy and perfect baby boy one December afternoon. I still remember the first pink tinge of life effusing his skin as they laid him in my arms. How beautiful he was.
And yet…
My mind cannot fully grasp this, yet my heart cries out that it is true: that December afternoon was but the beginning of a journey to perfection. Chase is only now becoming who his loving Heavenly Father desires him to be!
We don’t know now. But one day wewill.
So we will endure that we may be complete. Lacking in nothing. (James 1:2-4)
Moment by moment.
Rubbing lotion on his head and back to protect against burns
