Written by Linda Chan Rapp //
I checked the time on my cell phone, and then wrote, “Adjourned 7:04 pm,” on my notes for the self-determination advisory committee minutes. Good, I thought; my committee at Harbor Regional Center was ending almost an hour early! Getting out before 8pm meant I had plenty of time to swing by my daughter’s Bible Study to give her a ride home, as long as I left the regional center business park by 7:40.
Note: In California, funding for people with intellectual and developmental disabilities is disbursed through twenty-one service areas called regional centers, and they have been part of my world ever since my daughter Eden was diagnosed with Down syndrome at birth almost 22 years ago. As she has grown and blossomed, my hopes and prayers for her have also expanded.
But the nagging question that pierces my heart like a sword is: What will become of my child when my husband and I are gone? Who will help her through life’s painful passages? Who will affirm her and help her keep on track?
My daughter is blessed with a loving, generous brother, and a network of friends and mentors who truly care for her, accepting her for who she is, and encouraging her to share her gifts in the community – at church, at her job program, in the neighborhood, and in our network of families who share an extra chromosome. Still, the unknowns and the questions about her life after I’m gone haunt me.
As I packed up my agenda and papers in the regional center conference room where the committee had just concluded, in the audience I noticed a middle-aged woman bundled up in layers looking around with some uncertainty. Being in no rush, I walked over to her and introduced myself and asked if I could help. She shared that she had arrived by Access van service, so she had to wait another half hour for her ride to come pick her up. So after visiting a bit, we decided to walk over to Starbucks together to hangout while she waited — and she started telling me about her life.
She is a regional center client but has had a very full life — both positive and negative. She got married and had two children. Then things started to unravel; she was divorced, and within a short span of time, Child Protective Services had taken her young daughters away from her. Then, soon afterwards, her mother died. “It was bad. It was like a mountain, a very big mountain…” she sadly reminisced.
“Are you okay?” I asked. “I’m so sorry. It must have been terrible.”
“Oh that was a long time ago… I’m okay now.”
And then she told me about her life now — living independently with a roommate with support from in-home supportive services (help with shopping, housework and more), serving on the board of a housing foundation, riding the bus everywhere, and participating in a self-advocate group.
She told me about grandchildren, her godson, and her daughters — one who is a nurse, and one who is graduating with a degree in teaching this May. She does not see them often, but they do get together. “They are happy. It’s good,” she told me.
As she spoke, my mind was racing ahead, trying to see Eden’s future, trying to imagine her life… Will she find true love? Will she get married? If she does and has children, will she be able to raise them? Will she live to enjoy grandchildren? What will her life be like after her father and I die? Will she be able to weather the storms and sorrows of life and still be able to say, “It’s good”?
As my new acquaintance and I walked back to regional center, Access had just pulled into the parking lot, and soon she was gone. But she left me with a new peace as I reflected on Eden and my questions for her future regarding employment, housing, relationships, safety, and love.
So many unknowns! But this one thing I know: I can certainly with certainty entrust my daughter to the care of her loving creator, for He is faithful to see her through no matter what happens in her life between now and glory. The woman I visited with never mentioned God, but I could sense He was/is watching out for her as well. How much more will he guide and guard and provide for Eden, even when troubles seem like an insurmountable mountain; for, after all, she is His daughter as well as mine!
Editor’s Note: The following poem was written by the author’s daughter Eden.
“Bad R and Good R”
by Eden Rapp
Sometimes I feel I live in two worlds.
One world is typical world where
I do pretty much the same things you do.
I take classes like theater classes and it is fun.
But I have another world;
it is called Down syndrome.
So it takes me longer
to learn to do work.
In the typical world
“Retard” means silly and funny
and you use it all the time.
But my Down syndrome world
“Retard” means stupid and ugly
and I feel like a orphan.
So instead of the bad R-word
please use RESPECT.
It helps other people
and it encourages others.
That also includes you.
Linda Chan Rapp is a pilgrim and a teacher on a healing faith journey, an empathetic listener with a learner’s heart. A Southern Californian, she loves her family, (i.e. her children, and her BFF of almost 40 years), and enjoys music, reading, writing, museum-hopping, and checking out wardrobes for Narnian portals.
Eden Rapp, a native Californian, is a job intern at Kaiser Permanente South Bay Medical Center through Project Search. She leads a self-advocate hangout called UpVoice and co-leads a total-communication family meetup called SuperSigners. She is a recipient of the Voice Award from the Down Syndrome Association of Los Angeles. Also she is a Jenga master.