How it feels when it really happens...
For Gwendolyn and our family we believe, as with her siblings, she can have it all. Each would grow by being out from under the security of the parental umbrella and Gwendolyn is no different.
We set aside the date and vision of exactly what independence would look and feel like for Gwendolyn for another day.
In September 2021, that day came!
After years of dreaming, preparation, and hard work, we helped settle Gwendolyn into her new home - a fabulous residential living community. Marbridge has everything for her including life skills classes, exercise, nutrition, and her favorites including cooking, art, biking, jewelry making, basketball, swimming, and even horseback riding. They offer lots of social activities and opportunities to work on campus too. She will live in a dorm with a roommate and 26 other adults with various disabilities. She will have independence within a secure and supportive framework - what our definition of independence evolved to over the years.
She has been excited for months since her waiting list number got called. And to be honest, my wife and I have been giddy too over the prospect of being empty nesters!
But on this actual date, I sat on her new bed holding her, tears welling up inside me as I choked out the words, "I love you. I'm so proud of you." And after a few moments of recovery, "I will miss you."
Butcher Block Plans
Several years prior, Gwendolyn declared her pursuit of independence. We stood around the countertop in the kitchen with a big sheet of butcher block paper and mind-mapped what independence would mean:
Personal Hygiene and pride
Work and responsibility
Chores and family
Safety and security
School and learning
Decision-making and independence
We talked about each category and that the journey would be long, but that if Gwendolyn truly wanted independence, we would be there to guide and support her and there was no reason she couldn't achieve her dreams.
We talked a bit about what independence might mean because it can be defined differently for each person and family. Perhaps more responsibility at home, more decision-making, inclusion in the community, or moving out of the family home. Time would tell.
A Tough Goodbye
I admit, as the time for us to leave drew near, I did wonder, "What the hell are we doing?" But I immediately took solace that this has been her dream, the community and especially the staff here have been fabulous, and after nearly 27 years at home with us, it was time for her to move to her next adventure. She had certainly plateaued during COVID and needs new challenges to keep her learning and growing, and this is it!
After we took a few more pictures, we gave our last hugs and kisses. Gwendolyn has always been quite empathetic if not emotional herself. So I wasn't surprised when my eyes welled up again, she squeezed me tight. I said, "It is okay to be sad sometimes but you will love it here. You've made it!"
She responded, "I'm not sad. I'm so happy. You can go!"
I chuckled and we headed out.
Passing Reflections
Jennifer and I decided to sell our home and move to be closer to Gwendolyn once she got a space in this community, so we could be there for her and she could be there for us. Within a month, we purchased our new home 18 minutes away, an easy drive to stop by for a visit, pick her up for dinner, or take her home for a weekend. Yet the shift from permanent housemate was more significant than I had expected and was further complicated by a six-week no-visit policy so she could develop comfort and support within her new community.
Still, Jennifer and I walked silently to the car carrying only two empty suitcases. We slid into the front seats...and cried. I think they were collective tears of finality after such a long journey, certainly of the anticipation of missing her routines in the house, her pet names for us, and her endless inquiries about dinner plans and if we are okay.
A few days earlier I lay on her bed as she was enveloped by the TikTok stories on her phone while she lay on the floor. I watched her face but all I could see was the newborn whose cord I clipped and then held in my arms, the baby who would sit in front of the mirror making faces amazed at the transparency of it all, or the toddler I'd spin around on swings and play cars in the driveway, or the teen who discovered love...and kissing, and then the independent 25-year-old beaming after her first day of work and when she walked home all by herself. That girl, that young lady, was now truly independent and on her own.
And just like that, Jennifer and I became the newest empty nesters and were freaking out!
We soon reminded ourselves of Gwendolyn's great successes, the fabulous community she was now a part of, and the admirable job we'd done as parents.
We hugged each other, smiled, and drove away in silence.
Week One
We FaceTimed or talked to Gwendolyn every day the first week. She was settling in well and enjoying her classes. She seemed a bit confused when we redirected her requests for different foods or why pill time is different to her local staff but she eventually got it. Change is difficult for us all, but always pays dividends in the end.
We are indeed proud of her and of us. It is a difficult journey for Gwendolyn and perhaps even more difficult for us and for other families who likely never fathomed moving their adult with Down syndrome out from under their roof. But the growth, pride, and confidence we have seen as Gwendolyn blossoms further has made it all worthwhile.
(more sniffles)
Nearly Two Years Later
Nearly two years later, Gwendolyn has settled in well at Marbridge. She goes to a wide variety of craft, hygiene, and exercise classes, and loves her Karaoke, bingo and town trip events. She began work in the cafeteria at the beginning of the year and is now assisting with some new family orientation sessions.
The most challenging adjustment has been social relationships. This is the first time she's lived outside the family home besides summer camps. She now lives with a wonderful suitemate and 11 other ladies inside the lodge building. There is a wide variety of diagnoses, cognitive abilities, and emotional approaches. This diversity is heartwarming but can also be trying at times. This is an adjustment for Gwendolyn, the newby. She is working hard at fitting in and distancing herself from drama. She does get frustrated but this is an important part of her development. There is drama everywhere. We all deal with it. With the help of staff and her on-campus therapist, she is developing skills to manage the drama and minimize the impact. It's life and perhaps an unexpected addendum to her independence plan.
As a family, we've been very pleased with the staff, security, communication, and care that Marbridge provides. We did a lot of research before choosing Marbridge and that has indeed paid off.
Housing is a big decision for every family. I encourage you to go down this path - for your self-advocate's growth and your peace of mind. But be sure you consider all your options, do your homework, test your views and suspicions before you make a decision. There are more articles regarding housing considerations on our website and a full section in The Essential Guide for Families with Down Syndrome.
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
GET YOUR COPY HERE!
Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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