Today we share this personal story, poem and artwork by Deana Tavares, a poet and artist who is a former BCH patient, volunteer and employee. Deana has been attending every Saturday vigil this month and is the person responsible for the most beautiful of our signs. We thank her for sharing her wonderful talents for our cause.

Deana's Story

Children's Hospital never gave up on me, so I will not give up on it! I am that Redwood tree standing tall and strong and at the heart of this battle. Since I was a young child I have been obsessed with art and also writing as a teen. Many battles have been fought with my sharp pencil or fine pen. I never fully understood my purpose in life until the day that I discovered that the Prouty Garden may be destroyed. This is my opportunity to use what I have to fight to make a difference. One thing that I have that the Redwood does not have is a voice, and I choose to use it now. This is my cause. My blood runs through this garden. I am the voice of many who can no longer speak.

Illness has been the one constant my entire life. I never really feared the hospital, as I was born to a mother who was an OR nurse at another hospital. Immune system issues have plagued me my entire life, starting as young as a year old. Then my journey at Children's began at age 10 when I was diagnosed with Spina Bifida Occulta and a tethered cord. Upon releasing the cord and after a brief 2 1/2 week stay with many hurdles, I recuperated and was able to walk again. I was released to further recover at home and be a kid once again. Some are never afforded that opportunity. For me a small bump was a concussion, a slight twist was a sprained ankle, and running too fast became a fractured hip. But I ran as much and as often as possible because I could.

At age 17 when I should have been enjoying high school senior activities I found myself once again at Children's. This time it was Tethered Cord Syndrome. One spinal cord surgery turned into four, four turned into meningitis. There was a one month stay, then I continued the battle at home. Many ER visits were then followed by another month confined flat in my hospital bed. I visited the art room and garden as much as possible, my two sanctuaries. When I was able to stand with a walker the staff allowed me to paint on my bedroom window. Of course this was a highly anticipated event, and amazing therapy. Once recovered, I looked back and my entire senior year was gone, as well as most of my friends. Home tutors, family, nurses, doctors, and the garden helped me to gain the strength that I needed to graduate with my class and go on to college. My legs still worked and I proudly walked to receive my diploma smiling from ear to ear. Another CHB victory!

Age 24-30 was when debilitating pain set in and one more spinal cord untethering put me out of commission for six long years. I had experienced varying degrees of pain since age ten, but never like this before. There were meds galore once again and as a result my artwork and writing took a huge hit. I was able to wriggle out from under countless opioids to begin my life again and work with children at New Bedford Art Museum. I paid a visit to the hospital and my garden once again to give thanks that my legs still held me up. When I moved to the Boston area I was able to give an extra bit of thanks by volunteering with the art cart for a year and subsequently offered a temporary resource room position on the Hem/Onc ward for under a year. I already new about the healing qualities of the Prouty, but this is the place where I began to realize the true magic that the garden possessed. One month for me as teen was an eternity, but many remain for six, twelve, even twenty four. The garden is their personal garden, playground, campsite, and their field of dreams. Just like the line from the movie field of dreams "if you build it they will come", Mrs. Prouty built it and they did come. We did come. Some never left.

I am now the big 4-0 finally coming into myself, a late bloomer I guess you could say. Still fighting my crazy immune system flare-ups. Finally I decided to stop trying to run uphill and focus on what I'm good at: art and writing. I began to do this and my body once again started fighting back, and my spinal cord re-tethered again. Still battling pain but my head is clear from any distractions. Surgery may or may not be an option for me this time, but I'll take it as it comes, as I am that redwood standing tall. Art and writing are my medication, and I am heavily medicated. When you look at me, my deficits are well-hidden behind a smile and healthy-looking facade. But they are still there. People always are surprised when I say that I have Spina Bifida. They say "wow and your not in a wheelchair"? I'm not, and I am thankful that my legs still work. For many, that is not the case. I'm thankful for the doctors, nurses, volunteers, employees, patients, and equally to the garden. The ginkgo tree was one of my favorites with its fan-shaped leaves, forever preserved in a photograph. I'm thankful for everyone and everything that played a part in my own healing process. I'm thankful for the environmental services workers and the people that empty the sharps bins. They all do it with a smile, knowing that they are making a difference in the lives of very sick children, an honorable achievement. This is the extremely high standard and platform that I place Children's Hospital upon, as many others also do. Having said that, removing this garden will completely tarnish my image of this magical place where many seek peace from and understanding of their current circumstance. Also it's where they can breathe. I don't know if my legs will hold me up if it is destroyed.

There is a strength and common bond that I share with the many children who have walked through the doors of this hospital. We are all united experiencing many roadblocks and obstacles. All different ethnicities, from all over the world, join together here to get well. They share that garden with smiles, tears, laughs, and prayers. For some, every birthday, holiday, school vacation and entire school year is spent watching the changing seasons in this green space. It's not interchangeable with just any green space. This hospital's standards and this garden have given us the strength to go on. Now we must do what we can to give back. Every branch of that tree is a tribute to the strength of a child that has passed through those doors. Our spines may be weak, and some may need wheelchairs and walkers to continue on. Though we continue on. We are not strong enough on our own, but collectively, a redwood. A name should be assigned to every limb. Along with David, Allyssa, and Jose the laughter of many will forever linger in the breezes that blow through The Prouty garden. Three names added to a long list that will never ever be forgotten!

Within The Prouty

Within the Prouty there is a tree

What lies inside

A memory

A heart that beats

Strong and tall

Cut it down

Then we too fall

Within the Prouty

The sun caresses

My bruised flesh

Breezes blow away thoughts

Procedures

Tests

Within the Prouty

I can handle the aches

Within the Prouty

Tolerate shakes

Within the Prouty

I can touch

I can feel

Something that is solid

Something that is real

Within the Prouty

My happiness has words

The words are

Trees

Green grass

Flowers

And Earth

Within the Prouty

My silent thoughts can be heard

Even if only shared

Amongst squirrels

And birds

Within the Prouty

I am free

Breathing fresh air

Remembering me

Within the Prouty

I'm like that Dawn Redwood

Standing strong

Standing tall

Chop down

My heart, My Prouty

Together we fall.
~jummyjeenz 4/2/16