Jadene Sloan Ransdell
September 12, 2022
Welcome to Aging with Down Syndrome Take 2, a blog about supporting my son as he ages with Down syndrome.
A Parent Pioneer
A pioneer - I never dreamed I would be a pioneer. Pioneers, in my mind, were the folks who sailed in wooden ships across a turbulent sea to reach a place where they could find religious freedom. Pioneers were the people who settled the rugged, wild, untamed wilderness. Thought of as a pioneer by younger parents of children with Down syndrome, I checked the dictionary to see how that word defined me. According to Webster's Dictionary, a pioneer is "a person or group that originates or helps open up a new line of thought or activity..." Well, I guess that does somewhat describe me.
When my son, Matt was born with Down syndrome in 1974, we were told that he probably wouldn't live much beyond his twenties. Back then, some doctors who saw little ones with three copies of the 21st chromosome (one of the medical terms for Down syndrome is Trisomy 21) thought of them as "bad babies." So, in addition to a short life span, we were given a lot of other dreadful information about Matt's future - what seemed like a laundry list of all the things he would never learn to do. In 2020, babies born with Down syndrome can expect to live a long life, as some people with Down syndrome now live into their 60s and 70s. I take comfort in knowing how much life has improved for these beautiful souls rocking that extra 21st chromosome.
Because of the longer lifespan, there is new territory to explore at this time; this might be why I am thought of as a pioneer. As a result of sharing my life with Matt, I find myself on an endless journey filled with uncertainties, as there are a multitude of unknowns for people aging with Down syndrome.
It's funny, I thought by now I would have solved all of life's mysteries! When I was a little girl, the world was one big mystery to me. On hot summer days in Iowa, as I sat in the wooden glider swing across from my sister, Jaren, I could look up through the leaves of the giant maple tree in our grandparents’ back yard. Peeking through those leaves was a brilliant blue sky filled with fluffy, white clouds – and God. I just knew that the rays I gazed at were from Him shining down on us through the clouds. I know now, of course, that they are crepuscular clouds. I still like to think those clouds with the sun’s rays shining through them are God.
When I was about four years old, I had a revelation. I suddenly realized that my mom was just like me. I must have believed that she was some sort of goddess or a super-natural being. But one afternoon, as I sat on the living room floor near our old sofa, I found myself staring at her legs. They were long and thin, her skin shiny and smooth. And then I noticed it. My mom had a knee just like me! I was in awe. Oh my, she had elbows too! “She’s like a bigger me,” I marveled.
God and my mother’s knee…those were a few of the life riddles that I was to encounter.
I had many questions growing up. “Why is the grass green and the sky blue? And who was it that said green is green? Why couldn’t green be something else, like ‘goba’? Who made up all these words?” At six, the questions were spilling out of me. I wasn’t sure what my life was about or what I was supposed to do. So, I played…a lot…with my dolls, my bike, and my coloring books. Jaren, and I played for hours with her plastic building block set, creating houses just like the one our dad had built after World War II. Back then, I was certain, that by the time I was 21, I would know everything I needed to know; I would have life figured out. At 21, I shifted that age to 40. At 45, I realized that I wasn’t ever going to know where life was taking me. I started to wing it.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
I’ve read those words hundreds of times – and in a few instances I giggle silently as I wonder if God is ever going to let me in on His plan.
It wasn’t until I reached my seventh decade that I have come to understand that I’m not ever to know what I am supposed to do with my life. I’m just to do the best I can with what I have. At this mile marker on my journey, I find myself filled with energy and an enthusiasm for life that I did not appreciate decades before. I have long believed that if I am quiet and do not resist, something good will unfold before me - even in the darkest times. I think that’s why I especially love this Bible verse.
The Blog and The Book
When I started this blog more than seven years ago, I wanted to share with others what life can be for a mom who supports her beautiful, adult son with Down syndrome, Autism, Apraxia, and Alzheimer’s disease. After that last diagnosis, I didn’t know what to do. So, I sat at my keyboard and let my fingers dance around as I sorted through the feelings that were drowning me. I was confused, angry, scared, lonely and desperate. The jumble of emotions was too much on some days. I started writing about Matt’s Alzheimer’s diagnosis and I told stories that led us to that awful day. In response, I received lots of encouraging comments from my blog readers, many who urged me to write a book about my life with Matt.
Little did people know, but that a book had been hiding deep inside me and waiting for over three decades to be written. I had many starts and stops – days when I could easily fill pages with stories about Matt’s life. But on other days, when my life was overwhelming, the energy that my writing took became displaced. My blog reignited that desire to put my stories into a book, to tie together all the loose ends of my life with Matt.
In the years after I stopped writing my blog, I have been putting my memories, thoughts, and feelings onto pages that will become my book. While I knew that there were a lot of people who enjoyed my blog posts, I was not sure in what direction the book might go. I knew that I didn’t want it to be just a collection of rewrites of my earlier periodic postings, so I put a temporary halt to the blog. I’m thrilled to say that my book is coming together wonderfully and in the past four years, it has found its own identity. In Letters to Matt: Unwrapping the Gifts of Disability (the working title) I share some of the difficult times I have had in Matt’s life and how I found the gifts hidden in
those painful periods.
Let's Explore this Aging Phenomenon
Welcome to Aging with Down Syndrome Take 2! There is so much to know about life after 40 when Down syndrome is a part of the equation. I want to share with you the life Matt has built, how I have supported him on his path, confess to the guilt I’ve felt, and expose some of the fears and worries I’ve had along the way. Future posts will include the lessons I’ve learned in experiencing life with Matt, and through connections with other families on similar journeys around the world. In the overall scheme of things, our numbers are small when compared with the world population. Yet, our community is strong. Let’s explore this phenomenon of aging with Down syndrome together.
I suspect that many of you will find yourselves in some of my posts. I can see you nodding your head as you read about an incident with Matt that you and your loved one have also experienced. I see you wipe away tears when the pain I share is your pain too. I have learned through Matt’s 47 years that while our stories may vary somewhat, our feelings and reactions are often remarkably similar.
I invite you to read my posts from the original blog below. Let those entries be an introduction to Matt’s life after 40. I encourage you to return regularly and if you choose, to contribute to the blog by sharing your own stories. I’ll describe how to do that in a future post.
My fervent hope is that this blog will be a source of helpful, practical information, a place of validation, and a corner for connection. Hugs and love! Until next time…