I am not a very artistic person — at least not when it comes to drawing or painting. I love to sing and write, but when it comes to painting, I am easily bored and impatient. My husband and kids also remind me that I don’t have a good sense of colors and patterns either. In fact, I’m lucky if my socks match. My kids, on the other hand, all have an artistic eye which they inherited from their father and their paternal grandmother, who is also a watercolor artist.
My daughter Johanna loves to do anything with her hands – baking, painting, arts, and drumming. It’s kind of ironic too because her whole left side is weaker than her right side. It’s hard to get her to use her left hand for daily tasks. But when creative parts of her brain are stimulated with music, baking, and art, the left hand rises to the challenge! Even though it tremors, Jo persists to do things she loves to do.
One of the more interesting things Jo learned to do when we were renovating our recently purchased home was to wield a hammer (with supervision of course) and measure stuff with her own tape measure. Jo’s hammer, a gift from her Dad, was pink and carefully hung in a pink toolbelt that Jo inherited from her eldest sister. Since the time we began renovations to our new home, Jo carries her tape measure in her purse. It works out very well because my husband and I are always misplacing tape measures (we own at least three.)
After weathering our first winter in 2018 and being sure the inside of our house was secure enough to ensure there would be no more water leaks, septic overflows or dead rodents, we focused on taming the jungle that was our yard. As we pulled out the overgrown and fallen trees, we considered gutting the dilapidated sheds in the backyard.
But on a closer look, one of them was kind of cute and had electricity. As we cleared it out and cleaned it up, my husband got an idea and asked Johanna if he could borrow her tape measure.
The shed had two tiny windows and an old slider. I suppose the former owners used it as some kind of workshop. My husband replaced the broken windows and installed used windows and a sliding door I found on the Facebook marketplace. We renovated the shed with all re-purposed wood and supplies.
Once it was cleaned out enough for Johanna to see it, my husband shared his vision with Jo to turn the old building into “Jo’s Cottage.” Jo has watched enough HGTV with us to know she was just given her very own “she shed” and she was excited!
“Jo’s Cottage” sits on the highest spot in the yard – painted bright yellow with red shutters – overlooking flower and vegetable gardens. Though it’s no longer home to birds (too messy), the birds fly all over the outside, especially because Johanna is in charge of filing the outside feeders. There are no finished walls inside, but it is a shelter from the rain and we even have an electric heater for some winter fun. Last Christmas, I put a tree in Jo’s Cottage.
The best thing about Jo’s Cottage is the fun Johanna has inside. It’s a place she can go with her friends – some of whom also work as aides – and have lunch or play games. But most of all it’s a place for Jo to create and display her artwork.
Last Christmas, we bought Jo a desktop easel, blank canvases and paint markers. The markers were easier for her to control than paintbrushes and the blank canvases seemed to “speak” to Johanna, inspiring her to draw. While she struggles to articulate and lacks fine motor skills to write – painting pictures of people, places, and things she loves gives Jo a creative way to express herself to the world.
Throughout last winter and spring, she was busy creating in her cottage until she suffered a large and debilitating hemorrhage in her brain in May. Over the summer, she lost some motor and cognitive skills as she struggled through staph infections, and more neurological issues which required long hospital stays and six surgeries in a four-month period.
During much of the hospitalizations and the recovery period at home, art and music brought Johanna hope. We brought Jo’s art supplies to the hospital so she could continue to heal through art.
The newly constructed hospital at NYU has private rooms with stunning views of the East River and Manhattan. The nurses helped me set up Johanna at different windows so she could paint her views.
While IVs delivered potent antibiotics to fight infections and catheters ran drained blood-tinged cerebral spinal fluid from her brain into a bag on the IV pole, Jo focused on healing with creative art. She painted and made music videos to pass long hospital stays and keep hope alive in all our hearts. Jo’s hospital room was transformed with her artwork from a place of struggle to a place of healing and hope.
Through the pain and struggle of this summer, one thought kept Johanna moving towards home and healing- planning an art gallery opening in “Jo’s Cottage.” It became the topic of conversation with almost every doctor and nurse who came into Jo’s room.
When at last all the many stitches and staples were removed and the wounds were healing well on the outside of Jo’s head and inside her brain, I knew it was time to focus on having the art gallery opening in Jo’s Cottage.
We literally came home from two days of appointments in NYC and I planned the event five days later. One of my close friends, another mom with a daughter with special needs laughed with me and said, “And you need to host a party for 40 people in the backyard?”
Yes, I knew we did. The official opening of Jo’s Cottage was a great success with friends and neighbors, some whom we had only met through social media, who attended Jo’s art gallery opening and enjoyed a lovely few hours basking in the sunshine and in Johanna’s smile.
Johanna gave tours of her cottage and showed her artwork to everyone. She explained some of her artwork – especially two new collages she created entitled “#beautifulbrain #beautifullife. In the center of each photo collage is an MRI of Johanna’s brain. If you know how to read brain scans, you’ll notice the hemorrhages and injuries to Jo’s brain. But the scans don’t tell the whole story like the cutouts of the pictures of Johanna’s life. Those pictures show a life well-lived and well-loved, a life filled with hope.
Many times throughout that day, I watched Johanna shine – even though I knew she was still struggling with pain and disabilities that slowed her down. What shined through her was hope.
Johanna’s artwork, her singing, sharing and songs all have the same purpose —to inspire hope — for a special young lady recovering from brain surgeries and for all of us who are searching for purpose in the struggles.
We all are inspired to hope.
From time to time, we will be opening Jo’s Cottage for Johanna to display her art. We are also planning to host art workshops for people with disabilities and their caregivers sometime in the near future. You can follow Jo’s journey at Johanna’s Hope on Facebook and even purchase digital prints of some of her artwork.
Every human life has a purpose and a future full of hope. To find your purpose, look more closely at your struggles and your strengths to help guide you to a place of hope.
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