Years of memories flashed through my mind like quick snippets before my eyes. Many things were different — the surroundings of our new house, my age and the fact that I wasn’t coming home to three children under ten while holding an infant who had just had brain surgery.
But one thing was the same — the feeling of starting over.
For some unknown reason, a clear memory of the first time I had to start over after bringing my daughter home from the hospital as a 3-month-old infant moved from my subconscious to the forefront of my thoughts.
I guess it was the familiar feeling of being overwhelmed after the crisis was over or maybe it was the fact that 22 years later, another lesion in Johanna’s brain was compressing critical areas and threatened her life.
It was Memorial Day when we came home from this last hospital stay and brain surgery. While millions of Americans gratefully remembered those who have died battling for our freedom, I was remembering the high cost of a personal war through a subconscious accounting of the battles that were fought and not yet won.
Exhaustion crept in quickly as my husband and I tag-teamed the care and assisted Jo into our newly renovated home. Once we settled her in, my husband set up to feed Jo lunch as I went to nap outside in the warmth of the sun.
After this most recent brain surgery, my daughter’s neurosurgeon expressed that he has a greater appreciation for people like us who have been caring for someone for so many years.
“Twenty-two years is a long time to be caring for someone,” he said.
He affirmed us for doing such a good job caring for Jo and learning how to navigate and advocate for her care along the way.
I guess 22 years is a long time.
Some days it doesn’t seem that long. I remember the day she was diagnosed like it was yesterday. Other days, like two weeks ago when we walked through the door after her 99th surgery, it felt like we’ve been doing this a very long time. I was exhausted and weepy over this thought of “starting over” again.
For all these years, my daughter has lived in the present moment of the struggle and didn’t seem to notice changes in her skills — maybe because we had the supports in place to get Jo back to her baseline quickly.
This time, she is aware. I’ve been helping her to focus on establishing some goals and routines to her life that she had gotten used to now. The last few years, I’ve worked very hard to help Johanna find a level of living independently despite the dependency she has on others to live.
For example, Jo loves her coffee and she has her own “Java Jo’s Coffee Corner” — complete with everything accessible for her to make her own Keurig coffee. Everything is a few steps away and within reach–until this past month.
She also loves creating art and drawing pictures of simple joys in her life. When we moved into our new home, my husband and I renovated a dilapidated old shed in the backyard, transforming it into “Jo’s Cottage” — a place for her to create and display her artwork.
Because her movements are more uncoordinated than ever before, simple tasks like walking, making a cup of coffee or putting food in her mouth require total support now. Drawing and painting are a little harder now than before, but still she tries because it gives her hope and brightens all of our days.
The most noticeable effects of this past episode are in speech and swallowing. While we wait for the start of a formal stroke rehabilitation program, we are figuring things out at home — making changes to accommodate the new normal. In regards to speech and swallowing; it means more safeguards in place to protect Johanna’s airway. It also means practicing active listening.
Jo’s speech is slurred and pretty quiet. We have to ask her to repeat things over and over again so we can understand. For a person who is as social as my daughter, this is very hard. While her expressive language can be slow at times and sometimes the thoughts behind it are confusing, Jo used to get her point across eventually. Now she struggles to be understood and that’s a challenge for all of us.
But in all these areas where we are starting over, we learn new skills and strategies to care for each other. Meals are slower and more deliberate because we need to help Jo get the food in her mouth and make sure she swallows it safely. We are learning to quiet down and practice the art of active listening.
Even Johanna’s service dog Rae is polishing up on skills to help Jo recover. Rae helps brace Jo when she moves from sitting to standing and retrieves more items from the floor to place them in Jo’s lap. Rae is also naturally placing her head and body on Johanna to steady the tremors or wait for a seizure to pass.
Last night, Johanna was slowly telling a friend how her service dog helps her recover.
“She’s adjusting to me where I am now,” Jo said, with Rae resting her head on Johanna’s trembling hands.
Two weeks ago, I was feeling exhausted by starting over again. But already, I am seeing new growth in me, my husband and Johanna and in Rae, too.
Everyone gets a chance to start over in little and big things in life. It’s hard for sure. These times are often called setbacks. I prefer to see these times as opportunities for new growth.
This time last year we were starting over again, after almost losing Johanna to a blood infection and a grand mal seizure that threatened her life. After a summer of starting over, I purchased some rose bushes that were marked on clearance for sale in the fall. They didn’t look like much when I planted them. But I pruned them in the fall and again in early spring with great hopes for new blossoms.
The morning after I mourned starting over, the first roses bloomed in my garden in front of a treasured statue of Mama Mary — my heavenly Mother who guides me to her Son.
The pruning of rose bushes in the fall and early spring can be likened to the pain of starting over when trials linger. Starting over also promises new growth and holds out hope like a profusion of roses in full bloom.
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