Five Years Ago Today

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We are thankful for many blessings in our lives. But we are most thankful for the brief time we shared with our daughter Nora. As we walked with her through the challenges and hardships that she faced in her too-short life, I knew she was brave and strong. But now I have a new perspective as the mother of two healthy children. Now I know that Nora was truly awesome. Regular kids are not tethered to an oxygen tank 24 hours a day. Their daily adventures consist of more than trips to the doctor and painful needle pokes. They don’t spend 76 days straight inside an ICU room – never feeling the warm sun on their faces. They don’t turn blue and struggle to breathe after having too much fun jumping on the bed. They don’t face their own mortality before they can even understand what that means.

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That was Nora’s life. But also in so many ways, it was not.

Nora was a real living example of embracing the moment and squeezing every last drop of fun out of it. When the hospital harpist played Twinkle Twinkle Little Star, you could actually feel Nora’s joy all the way down to her little toes. When Nora was speeding down a big hill on a bike in San Francisco, it was like she had never had a day of pain in her life. After spending over 100 days in the hospital, she came home to a tea party with her bear and her dog, and it was like those days had never happened.

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Nora was the embodiment of bravery. When I would tell her she had to have yet another “owie,” she would cry and say “just this one, right.” She didn’t want to do it, she didn’t even understand why she had to, but she did it. When she needed a CT scan, she was so scared of that big, cold machine – and I couldn’t hold her like I usually did. It took some convincing, but we promised her no pokes and strawberry milk at the end. I held that cup of milk up so she knew it was there, and she went into the machine, and sat perfectly still. She was only three. If that’s not bravery, I don’t know what is.

I could go on and on with examples of how Nora was wise and brave well beyond her years. Of how we asked things of her that no child should ever have to do. Of how she had to face death and accept it before she even turned four – five years ago today. It is both devastatingly painful and incredibly inspiring to think of how Nora lived her life.

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Nora is not the only child who faces these challenges and who is heroically brave. That is why we started Nora’s Fund. We want to help those children and their families and make their journey a little easier.

I know we sound like a broken record when we say that Nora’s Library at the Valley Medical Center is coming along. It is frustrating to us because construction cannot start until the permit process is completed. And the permits are stuck in the bureaucracy of construction approvals for a public hospital. But Nora’s Library is going to be built. And it’s going to be a place where kids like Nora can find respite from the pain and fear of the hospital. We have raised $33,688. We need to raise $16,311 more in order to meet our $50K pledge.

Will you help us bring Nora’s library to life in honor of our hero by making a gift of support? You can make an online donation to the Nora Thelma Boström Foundation, a fund of Silicon Valley Community Foundation here or mail your check using these instructions. All donations are tax deductible and many corporations match their employees’ donations.

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As you think of all you are thankful for, please spare a moment to think of our little Nora and the big light she was in our lives. We made a visit to Nora’s bench in Golden Gate Park – as Nora would say, it was a “beautiful, sunny day.” And then we shared a Thanksgiving meal with our two little boys and family and friends.

With gratitude,
Thomas and Claire

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