Chapter twenty of the BOH manuscript: The Grace of Eagles
November, 2011
On my commute to work or Rachel’s therapies, I saw bald eagles, perched on tall trees, scanning the open water of Lake Minnetonka for sunfish. I think the largest number I counted was 12 eagles in one day. Eagle sightings are breathtaking, if not downright addicting. A local news story reported that they come early in December like clockwork every year.
Bald eagles are known for their strength. On December 5, 2006, Jim and I headed in to the hospital to bring Rachel into the world. En route, we saw three eagles peering out over the lake as we drove; seeing these birds became my own symbol of strength that I surely would need to give birth to my daughter, especially after 12 hours of labor.
After her brain injuries, a hit to the kidneys, along with the femur fracture, no one showed more strength to me than Rachel. That’s why I called her the “Fighting Rach.” And as I would drive from work, to therapy, to home, I purposely sought out eagles and harbored these sightings as reasons to move forward. Each day, I kept an eagle eye on her recovery.
That November of 2011, I had this strong feeling in my gut that her femur was healed and would not require further casting. Initially, doctors put Rachel into a cast splint. It was part plaster, part splint wrapped with a soft bandage. Doctors told us that we may have to go to a full cast. When I shared this idea that her femur was fine with family and friends, I think they thought I was nuts. And that’s ok, because I’m used to that.
A few weeks after the femur break, Jim collected Rachel from Grandma Kathy’s condo and took her to North Memorial. The doctors examined at the new x-ray with a look of surprise and shock. This fracture healed far faster than expected in their eyes. They sent her home with a removable cast, only to be used if she’s at school or at the mall or something. The cast was only needed to keep her leg safe.
Now, I really can’t explain the fast healing, but I surely felt it was happening. Is it my firm faith? Is it because she’s so young? Or, is it the experimental drug, Soliris, that was part of her medical regimen? Now, if it’s the Soliris, what does that mean for its future use? If athletes break their femur, could Soliris be used for faster healing of those breaks? I’m not a doctor, so I can only witness what was happening before me. She was healing… quickly.
It wasn’t without some strife still: one Sunday night around 9 p.m., Jim and I drove to Regions Hospital with a very distressed Rachel. We spent 6 hours there, only to discover that she had severe, painful constipation. I mean she was backed up… a lot. So the nurses administered the longest enema I’ve seen to get the poor girl’s system flowing once again.
I learned that narcotics can give any patient constipation. To get her bowels moving, the ER docs suggested lots of stool softener and soft foods to offset the heavy pain meds. I got all of three hours of sleep that night, and I still made it to my early morning class, clutching coffee for strength. Students asked me what the hell I was doing there after they heard of our trip to the ER.
With Rachel’s fractured femur, we canceled her PT for a while. This really was hard for me. It felt like such a setback. I just wanted to get back to the regularly scheduled healing journey we were on before. Yet her other therapies continued, and it forced me to ask: had we left the course we set at all?
For example, one day, Rachel sat with Carrie, her speech person, and the goal was to get Rachel to stick out her tongue. It’s a part of talking, so it’s also a piece of her therapy. By the end of the 30-minute session, by golly, she was sticking out her tongue on command. The following week, she looked like she was ready to lick ice cream cones, and happily so with that active tongue.
Post stroke, the list of things Rachel could do in the oral department had grown to eating, drinking from a straw, blowing a whistle, and sticking out her tongue. I asked her speech person, Carrie, what our next step was. She said, “Vocal production.” With an answer like that, I longed to hear her sing Christmas carols with me. If the femur could heal that fast, she’d be singing too, right?
The occupational front offered another note of her healing, as she (re)mastered the pincer grasp, enabling her to pop small snacks into her mouth. On the wide range of recovery motions, this was small, but it was big because I could give her a bowl of cashews. She could feed herself as I tackled the dishes in the kitchen while she watched a favorite cartoon.
As she watched television from her small chair, she worked on posture, focus, and concentration on the screen. The strokes nearly wiped these skills away. But now she could watch and enjoy Sesame Street, Dora the Explorer, SpongeBob Squarepants, and Phineas and Ferb. This recreation still led to the work on core areas like neck muscles and her trunk control.
Sometimes, as I closed the creaky door of the dishwasher, Rachel’s laughter caught my ear. “What’s so funny?” I asked, as I came in from the kitchen. Her belly laugh contained such mirth, the chair she sat on shook. While she couldn’t answer my question, I saw that her eyes and smile became bright, merry, and more even. Her healing gave me a growing faith that her true self, soul, and spirit was emerging each day.
But she still had her off moments. One day, she was weepy throughout the first half of the day during therapy and school. We know she wasn’t in any pain; we know how that sounds. The school nurse observed the tears and offered the following theory: Stroke victims often experience sorrow and sadness. They realize they are sick and cannot carry out the same tasks as they used to. I thought that her theory had merit. If she was mentally coming alive more and more as we thought, then she was realizing the depth of her illness. She always has understood concepts well, even before the strokes.
In mid-November, Jim and Rachel traveled to the U of M for Rachel’s infusion. While there, Rachel’s nephrologist, Dr. Lydia, paid a visit. She asked Jim several questions related to Rachel’s recovery process. He told her things like how she can feed herself cashews out of a bowl at Grandma Kathy’s house. How she could, while being held by Mom or Dad, pull up to a standing position on her legs.
After she gave Rachel a quick look, she told Jim how thrilled she was with Rachel’s overall progress. She said that Rachel was taking days and weeks to do what other kids with brain injury take months and years to accomplish. She was particularly moved by how good Rachel looked. She also observed the even, bilateral development of her leg muscles. For this doctor, Rachel’s progress was proof positive for the future use of Soliris, especially since the improvement in the neurological department was not the reason for creating this drug. Rachel’s swift recovery offered a strong case for future patients.
When I reported eagle sightings, one Bus of Hope rider, Mary, who lives in Taiwan, cited the following bible verse, inspired by the eagles, from Isaiah 40:31: “…but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
Rachel’s recovery was indeed soaring.