My (not so) secret garden
Before Adelaide died, I wrote about the garden she had planted for us, a garden full of people that would lift us up and take care of us after her passing. What I didn’t realize at the time was that as long as I continued to cultivate this garden, by maintaining relationships or doing work in her memory, her garden would continue to grow and thrive.
It has been four and a half years since Adelaide passed away yet there is not a week that goes by where I don’t connect with someone, online or in person, that has found us through Adelaide’s story in one way or another. They may find our family through our advocacy or my writing, through a social media post or an event that Miguel has attended.
Regardless of how, there is no question who sent them.
The amount of comfort, hope, friendship, and knowledge that we have been able to spread because Adelaide existed is astounding. This is where it gets a little tricky because I hate that Adelaide had to suffer. I hate that she experienced more physical pain in her short life than most people will in their lifetime. It’s not fair. Of course, it’s not fair that anyone has to endure anything similar. But they do.
Admittedly, this line of work can be overwhelming. Several times a month I am introduced to a family that has recently received a devastating epilepsy diagnosis, or there are the countless families I meet who have lost or are losing a loved one.
Just this past weekend, I had the absolute honor of participating in Southern Ohio’s Make-A-Wish gala courtesy of the Faruqui family. You may remember Tasha Faruqui from the beautiful guest blog she wrote several months ago. Tasha and her husband Safi have three incredible daughters. Seriously, they are each remarkable in their own right: bright, conversational, and spunky with hearts so big it’s amazing their bodies can contain them.
I had spoken with Tasha several times via phone and email, but this was the first time I’d met her, or her family, in person. Their middle child, 12-year-old Soraya, is “dying sooner”, as she matter-of-factly tells people. She has an undiagnosed neurodegenerative disorder (sound familiar?) and while it is unclear how much time she has left, her decline is increasing. As difficult as their situation is, it was incredible to spend time with them and their friends and be dubbed by their daughters as an honorary Faruqui. The ride to the event in a Barbie pink limousine was also fairly epic.
Upon returning from this trip, Miguel received a call from a colleague whose son had just been diagnosed with infantile spasms… at the exact same hospital where Adelaide received her IS diagnosis. I would spend the evening on the phone with the mother guiding her focus and what questions to ask.
Regardless of how close to home the stories hit, I am compelled to help by something someone stronger. Sometimes that means offering advice or referrals, other times that just means being present and listening. Whether directly or through happenstance, these people find us because Adelaide was here. Because we love her and speak about her. Because we nurture the garden that she planted during her too short time with us.
If I think too much about all the wildly wonderful people we have met through Adelaide while she was alive and since, it can feel like my heart is going to explode. I can’t even begin to contemplate what my life would look like if she had never been born, or if she had been healthy. I quite literally won’t let myself go there. A) It’s irrelevant because it can never happen and B) the few times I’ve tried I haven’t been able to get very far.
My sense of self, my perspective, my passions are so wrapped up in Adelaide it is impossible at this point to untangle them. When Adelaide was first being diagnosed, I tried to reject all the ways her health was going to impact me. Then, after she died, I was terrified that healing meant I had to let go of all the ways she had changed me.
Now I understand that there is no me without her. She and I are forever intertwined. In fact, maybe the real reason that I can’t imagine my life without Adelaide ever being in it is because I don’t want to. I quite like this version of myself that she helped create. This version of my life where she sends me individuals and families who are facing futures reserved for nightmares.
Every person I connect with, is another seed planted in Adelaide’s garden. I wish you could see her garden the way I do. Because I don’t think there has ever been a more beautiful spot in all my heart. It is the place I visit when I’m feeling overwhelmed by the hopelessness and grief I encounter. I recognize that by doing this work I am inviting more grief into my life. But, you guys, the joy that comes with it? That joy is everything - it is what living is all about.
The volcanic soil from whence you erupted nearly four short years ago is the most fertile around and I can see now that you’ve been planting seeds this entire time. Seeds of hope, community, empathy and love. You’ve planted more than a garden, its an entire vista and I have never seen anything more lush and beautiful. But you didn’t just plant the seeds you brought the people into our lives to help us nurture and grow them. Without you, we might never have met the warriors who walk beside us now and who will help hold us up in the days to come.
- “Dear Adelaide”, Kelly Cervantes, 9/27/19
Image description: Kelly in a red dress laughing toward the camera while holding Soraya’s hand, who is wearing a tan beaded dress and sitting in a black electric wheelchair. Behind them is Soraya’s family also dressed in formal wear, her 14-year-old sister, Yazmeen, her 9-year-old sister Leena, her mother, Tasha, and her father, Safi. Behind all of them is a Barbie pink limousine and a beautiful green park.
