Virginia Beach mother honors memory of daughter by opening therapy center for autistic children
Virginian-Pilot - 8/3/2018
Aug. 03--VIRGINIA BEACH -- A mint-colored backpack with hot pink letters -- Eliza -- hangs on the first coat hook in a colorful playroom.
The other backpacks along the row come and go, depending on who's on the schedule for therapy or playtime.
But Eliza's is always there.
It's just one of dozens of reminders for the girl's mother, Aimee Darby, who opened the Eliza Hope Therapy Center on Phoenix Drive in Virginia Beach last month.
There's Eliza's favorite board book, "First 100 Words," which her speech therapist made sure had a place in the library. A mini-trampoline in another room because Eliza loved to jump. A swing in an indoor gym down the hall because the back-and-forth motion soothed her.
Eliza Hope Darby was a 4-year-old who loved popcorn, Mickey Mouse and pine cones.
She had her first seizure at 16 months and was diagnosed with autism and a severe type of epilepsy when she was 2. Aimee and her husband, Aaron, struggled with all the difficulties that brings.
The meltdowns in Target. The seizures, ranging from staring into space to falling on the floor. The whirlwind of doctor and therapy visits interspersed with hospital stays. The difficulty explaining to others why Eliza, the couple's only child, couldn't do many things others her age could.
But always there were Eliza's hugs and kisses, her infectious smile, her nighttime cuddling that Darby described in this Nov. 10, 2016, blog post:
Eliza's favorite number is two ... When she wakes up in the morning she says 2 and shows two fingers. She randomly will look at me and say two and then cheer for herself. When we walk up stairs we count and she always says two with a little more excitement ...
Eliza woke up the other night at around 10pm and I went in to her room. It was one of those nights where she wanted to chat ... She giggled, recited her words, hugged me, kissed my hand a million times, gave high fives ...
She did a few more things and without saying anything I put my hand up to give her a high five and she said FIVE. It stopped me in my tracks because she rarely says five unless we are counting and she usually leaves five out.
She did it with such confidence like "yep those are five fingers mama" and I thought to myself how long has she been saying five? Had I been so busy that I had missed it? Has she done it before? Maybe I hadn't missed it, maybe that was the first time that she recognized five fingers and said five ...
I know parents miss things. I know that life happens and we can't always see every first. But Eliza's firsts are so important to me because they are a challenge, and she works so hard at them, and she doesn't give up on them, and she gets so excited, and who doesn't want to see their child's big successes? How sad would it be if I missed it because I was answering a text or an email or taking the millionth picture of her?"
The heartbreaking part about this post is that Darby wrote it on a plane traveling to Nevada. Her daughter died the next day. The Darbys don't know why she never awoke from sleep, but they believe a prior bout of pneumonia and frequent seizures caused her heart to stop.
I wanted to write about Darby and Eliza because they reminded me of other mothers and daughters I've written about over the years. Penny Maclure, for instance, whose 13-year-old daughter, Ashley, was hit by car when she was biking without a helmet. After she died of brain injuries, her mother started a campaign to urge children to wear helmets.
Casey Curry had a daughter, Tori, who died of a brain tumor at the age of 3. The mother struggled to find a bereavement book for children whose siblings had died, to help Tori's three sisters. So she decided to write one herself, called "I Remember You Today."
What these mothers share is finding a purpose to get through the death of a child. Like a piece of sand in an oyster turning to pearl, their grief turns to joy, or at least the peace of knowing their children's spirits live on.
You can see it in Darby's eyes as she shows off the Eliza Hope Therapy Center. She came up with the idea two days after her daughter's death. Her cousin mentioned starting a foundation in Eliza's memory, and Darby knew exactly what she wanted to create:
A center for children with autism and developmental disorders that would offer therapy and play and help all in one place. A bright, cheery spot where children learn how to do things that come naturally to most, like riding a tricycle or eating something besides popcorn. A place where parents and caregivers could become a community, supporting one another.
And so, Darby gathered with friends and family and started the Eliza Hope Foundation. They raised $350,000 in less than two years. She scouted out a building near Lynnhaven Mall and talked with several of Eliza's therapists, who agreed to lease space at the center.
The last week of June, eight children walked in to hang their backpacks on hooks and read and jump and swing and play together -- something that most take for granted but that comes hard for children with autism.
"I want people to love to be here," Darby said, walking from room to room. "My main goal is for no one to ever forget this sweet girl who lived for just four years but made such a difference in people's lives."
There have been times, she said, when she's felt too sad to get out of bed, but the center boosts her spirits: "There is such a huge difference in having a purpose. My purpose is to help these families."
On the anniversary of Eliza's death, Darby wrote eloquently about the hole her daughter left behind:
One year without you, It doesn't seem possible. I miss you so much it physically hurts, it really is like a piece of me is gone. But I get up every morning for you, even when I want to hide under the covers I get up because I want everyone to know about you. I want everyone to know that you were here.
I wish I could see you Eliza, so badly. I wish I could hug you and kiss you and tell you I love you a million times. I miss our morning snuggles so much, how you would shout "mama" and I would come into your room and you would jump back in your bed with a big smile on your face because you knew I was going to hug you tight and we were going to fall back asleep together. Sometimes I lay in your bed and imagine you're with me and that always makes me cry ...
I still haven't moved anything, everything that is yours is still in the exact place it was a year ago ... I stir my coffee with your little spoons, I wash my face with your tiny little wash clothes and I wear your necklaces around my wrist, all of that somehow makes me feel close to you.
Everyone I meet who has a child in heaven tells me this gets better but it's hard to believe because nothing can fill this giant hole in my heart.
I asked Darby if the empty feeling has changed much in the eight months since she wrote the blog post. She said it hasn't, but she's gotten used to it: "I also think that there is a part of me that doesn't want the discomfort to go away because maybe that will make me feel less connected to Eliza and maybe she will feel further away from me."
Grief is complicated. But Eliza was not.
"She loved to hug and kiss," Darby said. "Everybody she saw, she loved. Wouldn't that be great if everyone could be like that?"
In Eliza's honor, we can try.
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