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  • Writer's pictureJadene Sloan Ransdell

08 Isn't It a Lovely Ride?

Jadene Sloan Ransdell

Originally published October 12, 2017

It's been more than two years since I added to this blog. I can tell you that time has not been wasted and it's been quite a ride.

First, Matt is doing well. Although he still shows symptoms of Alzheimer's, the course is slow, and for that I am grateful. He continues to inspire people who take the time to get to know him. I like to think some people get to see his soul, while others are too busy to notice and miss out on the gift of a lifetime.

Since I last wrote there have been some sad developments in our lives. We lost our dearest, life-long friend to Lymphoma in February 2016. And one of Matt's supports has had a series of significant health issues. She has been a major part of his team for more than fifteen years, and is not just staff to Matt. We are devastated by the issues she now faces. As a result, much of the stability that Matt (and I) had come to know is gone. Yesterday we had Matt's annual meeting to plan for his Medicaid Waiver services for 2018. It was a difficult and very emotional time. As we attempted to work through some communication problems, we realized that each of us love Matt dearly and that this transition to a different way of supporting him is more difficult for us than it is for Matt (translation: I'm not handling the changes in Matt's supports very well, it seems). He, long ago, learned (or maybe he always knew) to be in the present moment and only contemplates what's next in his day. He doesn't get hung up on the "what ifs" in life and doesn't think too far into the future...something I've learned can be anxiety producing, but I still do it. In addition to his primary staff's health concerns, the staff who accompanies him to his VA volunteer job was involved in an automobile accident last week. Matt was with her and was not injured, however she was and we are not sure if or when she will return to work with him. So, Matt is unable to do the one thing he loves most - bring smiles to the service men and women he sees every day. This is a huge disappointment for me because it has been an important part of his life for nearly seven years.

But not everything is awful. When I last wrote I could not have imagined how much richer my life would become. I have long believed if I am quiet and do not resist, something good will unfold before me - even in the darkest times. I think that is why I especially love this verse from the Bible, "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

Over the past two years I have met many families who are on this journey with someone they love who has Down syndrome and Alzheimer's. As I have been on this ride, the number of families who have joined the Down syndrome and Alzheimer's Dementia Capable Support Facebook group has grown. I have read the stories, sometimes heartbreaking, of families all over the globe who are doing everything they can to ensure the life of their loved one is rich and full - even to the very end.

About eighteen months ago I was given the opportunity to start a national online support group for family caregivers. We chat monthly and share the struggles of our journeys; we also share tips for some of the issues that arise when dealing with Down syndrome and Alzheimer's. Our loved ones vary in ages and where they are in the progression of Alzheimer's. We have a professional present a topic of interest periodically to provide up-to-date, practical information that can be used in our daily lives.

This past March I started writing a bi-monthly newsletter for our family caregivers. To my astonishment, it is disseminated and read worldwide. My connection to families continues to grow every week. These activities prove to me that we need each other, and I feel blessed to be able to facilitate these associations. It is humbling and gratifying knowing that together we can make a difference in our loved ones' quality of life and find comfort in the bonds we make.

In February, I attended a conference hosted by the Down Syndrome Association of Central Florida. One of the speakers was a doctor I had frequently heard about in conversations with NTG colleagues. In his session, he read excerpts from a book he has written. One of the stories is of a young man who wanted to travel to California to meet the stars of Baywatch. Although his family didn't think much of it, he worked hard and made it happen and the result of that dream was bigger than even he imagined. As I drove home from Orlando to Clearwater, I reflected on how wonderful the conference had been for families of little ones and school-age kids. My thoughts turned to a time when I used to put on conferences, and I decided I wanted to create an event for adults with Down syndrome and their families. There are many changes when our kiddos leave the safety of the public schools and we encounter an entirely different world we must learn to navigate. Not only do we need to know about adult options, but some of us are at a point where we are looking at older age and may even be dealing with end-of-life issues. Somewhere along I-4, between Orlando and Lakeland I gave birth to my "Baywatch Dream."

Just as this young man had a dream that grew bigger than he imagined, my dream is doing the same. In June, I shared my vision with my friends at the NTG and Sara Weir, President of the NDSS. They were eager to support the development of my dream and we are now deep in planning for the Down Syndrome Adult Summit to be held at the Westin Gateway Hotel in Arlington, VA on April 9 and 10, 2018. The summit will focus on areas of interest to both young adults with Down syndrome and their families, as well as those of an older age or dealing with Alzheimer's. It is rewarding and exciting watching my dream unfold and come to life.

Because I have the lead on this project, I was presented with yet another incredible opportunity. Just last week I participated in the NDSS Leadership Summit where I got to meet some remarkable young people with Down syndrome and their families, visit the Gettysburg Battlefield, participate in training conducted by the Lincoln Leadership Institute at Gettysburg, and speak with Florida Congressmen. But that's not all! The highlight of that trip was getting to be part of the most amazing dining experience in a 5-star pop-up restaurant where all the staff were young adults with Down syndrome. The entire experience touched not only my heart, but my soul, as well.

I can say that Matt's diagnosis of Alzheimer's, although hard to think about, has offered me so many rich and fulfilling opportunities. Even though life is filled with twists and turns along the way - some that are painful, some that send us spinning, and some that make us dance - life is good and it is such a lovely ride!

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