New update on Autumn from Cinnamon:
“I’m sitting in my kitchen right now. I’ve checked on the beehives, laundry is going, rhubarb is chopped and ready for pie, and a little boy is sitting on the counter eating peanut butter from a spoon…life almost feels “normal”. But, what’s normal anymore? I have so many emotions right now. I guess I can identify when Brenna says that they seem to grieve more at home. At the hospital I feel on call as a parent, advocate, caregiver, etc. but when I walk through the doors of home, the waves of grief and pain seem to crash over me. At home I ask myself the questions that I avoid at the hospital. . .how independent will Autumn be? Will she be able to go to school? Will she be able to care for a family?
On a more personal note, I wonder how much more I can weather. I know that the future holds a liver transplant for my husband, and we manage the unknowns of that disease on a daily basis. One night last week he had a very painful episode in the middle of the night. Episodes like that usually precipitate a trip to the hospital for him. Thankfully, it resolved and we didn’t need to go to the hospital, but I’m fully bracing myself for the very real possibility that I could be shuttling between two hospitals and stepping back into the advocate/caregiver role for Scott.
I’m so very tired; weary of living a hybrid of hospital-home life. When I was visiting with Randy and Elijah, I told them that I just wanted to be two years down the road from here. However, I don’t want to lose these moments of reliance on the Lord…of running to him every minute of the day…of watching him work in our kids’ lives, our own lives, and the lives of people I don’t even know! I know I’ve completely come to the place of disbelieving the adage, “God won’t give you more than you can handle”. If I can “handle” it, why do I need God? Watching Scott struggle through cancer, managing liver disease and waiting for a liver transplant, seeing my daughter fight for her life in ICU, I don’t know if I could have handled those things on my own. I wonder if the Lord does give us more than we can handle, at times, because then we have to rely on him.
In the midst of my “normal” activities, the song Draw Me Nearer by Merideth Andrews came on my praise and worship station. It gave a voice to the longings in my heart that I had yet to realize.
“In your nearness there is healing
What was broken now made whole
Restoration in its fullness
Lasting hope for all who come
In your nearness I take shelter
Where you are is where I’m home
I have need of only one thing
To be here before your throne.”
It reminded me of Psalm 27…in particular verses 4-5, which state,
“I have asked one thing from the Lord; it is what I desire: to dwell in the house of the Lord all the days of my life, gazing on the beauty of the Lord and seeking Him in His temple. For He will conceal me in His shelter in the day of adversity; He will hide me under the cover of His tent; He will set me high on a rock.”
The difficulty, pain, grieving of this trial is then eclipsed by the desire to remain in the presence of the Lord.
I am grateful for how much Autumn is progressing! She is emerging from the Post Traumatic Amnesia and we are now seeing some of her short term memory return. This is wonderful as it will allow her to really progress in therapy. The therapists are really working on decision making skills. This is an area of thought that the frontal lobe controls, and with her frontal lobe injury, she needs to make those connections to enable her to become independent. When we were with her this weekend Hunter asked Scott what city we were in. Scott told him it was Englewood. Autumn pipes up and says,
“You could’ve asked me! They ask me every day what city I’m in and I tell them Englewood!” We all laughed pretty hard. She doesn’t understand that a week ago she couldn’t remember that!
Her vision in her left eye is still in question. The latest from the eye doc is that she is healing well from the surgery, but the optic nerve appears pale in color, so there may be damage to that. There’s nothing more to be done for that eye from his end, so we will wait and pray expectantly to see how much healing might occur. Like all of her other injuries, it will just take time! She still has a ptosis of her right eyelid, so it droops and is difficult to lift. I can tell it is getting better, but slowly, in small increments.
We met with her care team last week and her neuropsychologist made an interesting assessment. He thinks that some of her progress is due to her years of training in speech and debate. He wants to take some of the drills, etc. that she used in debate to process information and apply them to her therapy.
Her therapy schedule gets increasingly heavier each week. It’s amazing how much they can pack into a day with her! We are trying to settle into this new routine and make the most of our days with her at Craig. It’s surreal to look at the facility and know that this place will be a part of our lives for the rest of our lives! We are so grateful for this place and the work that they are doing! Thank you all for you continued prayers!
Hunter, Aspen, and Summit wanted to join the ranks of shaved heads, so here’s the latest family picture!”