The post below comes from Nicki Applebee. Nicki is the mother of two BCH patients, including the very special Olive Hope. Olive was born with Hemifacial microsomia, which gave her a "little side." It affected her ear, her jaw, her kidney, and gave her multiple heart defects (ASD, VSD, crisscrossed AV connectors, and pulmonary stenosis). Her speech was delayed, so the Applebees all learned sign language. Olive knew over 200 signs.
And Olive loved the Prouty Garden. She delighted in the squirrels and was fond of the hidden frog statue. She loved to play with bubbles by the fountain. At home in Maine, Olive enjoyed daily outdoor walks with her parents and her grandparents; the Prouty Garden allowed Olive to continue her routine of getting outside in nature every day while at BCH, even when all other aspects of her day-to-day were interrupted.
Olive did not recover from her third heart surgery at age two and a half. Her family now goes to the Prouty Garden to remember her. Olive's younger brother (age six months) will be having his own surgery at Children's in a few short weeks, and the family is so thankful that the Prouty Garden will once again be there to ground them and comfort them. We would like to sincerely thank the Applebees for sharing their experiences of the Prouty Garden and we send Olive's brother every good wish in the world for a successful procedure later this month.
Now, here's Nicki...
I'm not one of those people that support different 1,000 causes. There are few things I have time for, and honestly, as a mother at home with 6-month-old twins and a toddler I just don't often have the energy to be passionate about much beyond daily survival. As Olive's mommy, however, I do have some time to tell you about why we need to save Prouty Garden.
Olive Hope Applebee was a very amazing girl, and she was followed at Boston Children's Hospital from before birth until the day she died. She was born with multiple heart defects and, along with many less invasive procedures, she had open heart surgeries at two days old, eight months old and two and a half years old... the one that left us coming home without her. Her story is important for many different reasons, and I can't get into all of them here. For now, I'll just focus on the garden.
The garden was our sanctuary. We spent time in the garden as we waited hours and hours for Olive to get out of surgery. Only two people can be at the bedside in the CICU, so we gathered in the garden when we needed to be together with family and friends. We chose a time of day and sat together with coffee and cookies, reading books and pretending that we were back at home instead of watching my baby struggle. It allowed us a break from staring at the screens, hoping her broken little heart would keep beating. The garden gave "us Mainers" a chance to be surrounded by things that were alive and healthy, perhaps forgetting for a moment where we were and why we had to be there.
Once, Olive somehow ate a Goldfish cracker (from a box that there was NO way for her to reach from her carseat!) before a heart cath procedure. We had to distract our little toddler from eating for most of the day. The aquarium in the lobby was interesting and the gift shop bought us some time, but it was laughing and running and napping in the garden that got us through that day.
We spent Christmas one year in the hospital and after choosing from the donated items for Olive's presents, we vowed to be a part of that celebration every year. Since 2013, we have collected and sent toys and presents in December (and delivered them personally all but the year we had newborn twins). On our way out of the hospital, we always make sure to stop and say "hello" to the garden. It's the place that brought me peace during some of my most difficult hours. It's one of the most special and magical places I can think of, and I hope I never have to say "goodbye" to it.