On Friday June 26th, my oldest daughter had a “small” stroke. Unusual in one so young, and so the ER doctor took the idea that she had a bit more lightly than he probably should have. Still, the neurologist on call kept her in the hospital for neurological tests and observation. Cat scan was clear, but the MRI showed damage in her basal ganglia. She had residual numbness in her right hand leg and face but no paralysis.
They did more tests, but ultimately they planned to let her go home Monday with meds, some physical and occupational therapy, etc. As young as she is, she’d heal and her brain would reroute around the damage so there was much to be thankful for.
Then in the early morning hours of Monday, June 29, she had another “episode.” The neurologist on call that day said it was swelling from the original stroke, but he wasn’t the one who had seen her before so maybe he didn’t realize.
The difference was startling ~ her right leg and arm were now mostly useless and the right side of her face was sagging; it was difficult for her to speak where she had had no difficulty the day before, her words were slurred, and, worse, she had trouble swallowing even liquids.
Her boyfriend, who had brought her to the ER on Friday, had stayed at the hospital with her over the weekend. The tension between the two of them when I came into the room was palpable, and I knew they’d argued. Both are quick tempered, and they haven’t been together long enough for either to recognize fear in the other when it’s disguised as anger and impatience.
I’m one of the few people she will let see the reality behind that angry facade: that she’s scared. That’s fair, because I think she learned to build that protective facade from me.
So when he said she’d been napping off and on, but not really sleeping, I sat down beside her on the bed and asked her why. Struggling to get the words out through the paralysis and the tears, she gestured to her whole body and said, “what if I wake up and it’s all like this?” She was afraid she’d have another stroke and be completely paralyzed.
I reassured her that the worst was past, that she was right where she needed to be, in the hospital with people to see that that wouldn’t happen, and after the neurologist had been in to see her, I went home to get some things and came back to stay with her that night.
The neurologist told her she had to be patient, let the meds work, do the physical therapy, occupational therapy, speech therapy they would set up for her, but it would be a couple of weeks before she would see any progress at all, and a few months to get back up to 90% or so. “Patient,” particularly with herself, isn’t my daughter’s long suit, and I could see the devastating impact of this news in her eyes.
It was heartbreaking to watch her doze and wake that first night, unable to go to sleep and stay asleep. Finally I used an Abraham-Hicks meditation recording to redirect her focus away from the fear, but it was still well into the night before she was sleeping more soundly.
When he visited her on Tuesday, the neurologist was almost astounded by the minute but visible improvements from the previous day. The potential for improvement was such that he recommended her for intensive in-patient rehabilitation at a facility where she’d get an hour each of OT, PT, and Speech Therapy everyday Monday-Friday, with one hour on Saturday, and Sundays to rest. They transferred her to the facility the next day.
During the initial consultation with the rehabilitation doctor, we discovered that the MRI showed two strokes ~ one large and another smaller one ~ on the left side of her brain. She took the news fairly well, given that even with all the tests, including a Trans-Esophogeal Echocardiogram done in ICU, and vial after vial of blood sent away to be tested, they weren’t (then, and still aren’t) able to tell her what had caused the strokes.
She was very tired just from being moved from one hospital to the other, but you could see the determination in her eyes when the doctor asked her to try to grasp his hand or to bend her arm. You could see it in the trembling of her shoulder and chest how hard she was trying to make her body work properly.
She’s a single parent with 5 children still at home, but we had two pieces of good fortune there: we are blessed to have her sisters, her brother, her grown daughter and son-in-law to help where needed, and all the cousins to keep the kids busy. And since it’s summer time, the cousins would all be sleeping over at each others houses and going to the park and the pool together anyway. Again, much to be thankful for.
During her first days of inpatient rehab, she was pretty weak, tired easily, and wept a lot, which was heartbreaking for those of us who took turns staying with her. It was a long couple of weeks of sleep deprivation and almost constant stress – for her, for her boyfriend, for me, and for many of the adults the family.
Yet, even though she was physically exhausted and emotionally fragile much of the time, her strength and determination came back every time, and from the first full day there, she was a rehab rockstar. Her reward for all the hard work was a happy surprise when she was allowed to go home nearly a week sooner than the rehabilitation doctor’s first prediction.
As joyful as that was, it isn’t the end of the story ~ just of the first chapter. She’s still has pain and weakness down her right side, her right hand is still mostly uncooperative, and she is still emotionally vulnerable, more so than she would like to be, impatient with her limbs and her much lower energy level, tired and scared from time to time, when worries and what ifs take up residence and chase each other around and around in her head.
She has medicines to take that have to be monitored and is supposed to be scheduled for out-patient therapy sessions two or three times a week, along with appointments with a neurologist. And she is continuing to get better every day ~ though not as quickly as she would prefer, I’m sure.
But she is at home, and though that’s 45 minutes away for me, it’s much better for her state of mind and her larger support system, as her boyfriend, her brother and sisters and their families, as well as her grown daughter and son-in-law all live nearby.
She still has a long road ahead ~ we all do. Some of it lined with frustration and uncertainty and not a little fear, but also ~ and mostly ~ filled with hope and belief and deep well of determination.
And I keep thinking of this quote I read in my email awhile back, from singer-songwriter Jason Mraz:
”You’re not obligated to win. You’re obligated to keep trying. To do the best you can do everyday.”
Maybe I keep thinking of that because its something my mama, her grandmother, would have said ~ and it is what we do, all of us in this family. We keep trying.
Because she is fearless . . . and fearless doesn’t mean you’re never afraid; it just means you won’t let your fears stop you.