Glimpses into the future have been both scary and reassuring.
Many of you have heard me talk about my Aunt Peg on numerous occasions. Sadly, I only see her 1-2 times a year because I live a good 15 hours away and even growing up, I only saw her on holidays. In spite of the distance, I do receive frequent updates of my beloved aunt. Oh the wonders of the telephone and email!
While people with Down syndrome are living longer lives, they often do not grace this Earth as long as the general population (many live into their 50s and 60s). That means in the world of Down syndrome, my Aunt Peggy, at the age of 53 years-old, is considered elderly. She is declining in her health and in her mental capacity. She is showing signs of Alzheimer's and is being treated with various medications. Unfortunately, finding the right combination of medications is rather complicated. Some make her worse and some make her better. As is common in the elderly population, a simple urinary tract infection can lead to changes in her mental status. Then we are left with "is it the UTI?" vs. "is this the Alzheimer's progressing?".
It is painful to watch Aunt Peggy go through this, even from afar. I do not relish watching my Dad and his brother and sisters navigate the complex world of medical care, assisted living, nursing homes, and hospice. I do not like seeing this future. I do not like that I may see this happening to my Ellie. Do I really have to watch my baby steadily decline both physically and mentally at the age of 50? As I watch my father and his siblings work closely with the group home in deciding what is best of Aunt Peggy, I become scared. What if I go before Ellie? Who will take care of her? She has no siblings? Do I really want the State in charge of her care? This is one of the instances in which I believe parents do hope to outlive their children. Yes, there it is, I want to live longer than Ellie. . . even if it means I have to watch her decline. As a mother, I want to protect her and I seriously doubt that will change as I approach the age of 80.
Of course, Alzheimer's disease and failing health can happen to anyone, even those without Ds. Let us not kid ourselves. I may one day be wandering hallways and unable to recognize my darling Andrew and my dear Ellie. In fact, what if my Ellie has to watch me become ill? No, Ellie's future is not definite. Ellie's fate may not be the same as my Aunt Peggy's and yet, I cannot help, but see this as a very possible future for my little girl.
Feeling reassured and seeing the unlimited possibilities.
Just moments after I received the news of Aunt Peggy's current bought of illness, I saw a delightful glimpse into the future. A future full of promise and the sky "being the limit". I am the proud parent of a nearly 3 year-old active climber who enjoys causing white hairs as she attempts and often succeeds at death defying acts. Because of the Bear's love of climbing and because Texas is a sauna, I often venture out to the indoor playscapes at fast food restaurants. Today we ventured out to a McDonald's that we rarely go to. While at this playscape, Ellie starts to shout "GUY" (hi) to this nice lady. This woman gushes about Ellie's beauty and then tells me that she wants me to meet someone that she works with. Beth* enters the playscape. She is stunning with long blond hair, green eyes, and a confident stance. Beth, has Down syndrome. Beth starts to tell me all about her work. She tells me all out the ins and outs of nonprofit organizations. Things that I didn't even know. She is passionate. She loves her job which is currently with Meals-on-Wheels. She also tells me that she does live with her parents, but she "just has to get out of the house." Her escape? Shopping. She does all of her own shopping at the grocery store and at the mall. She does not need any assistance in picking out items, in calculating the cost, or in producing the correct amount of money. This was emphatically confirmed by the lady who introduced me to Beth. Apparently, this woman is an aide, but for Beth she is simply the driver and a friend because Beth is so independent.
These two interactions have provided me with brief, possible glimpses into Ellie's future, but they are just that, possibilities. While all children are unique individuals, I do believe that there are some similarities among those with Down syndrome. After all, each person with Ds has an extra copy of the 21st chromosome in each and every cell. That is why people with Ds tend to have low muscle tone and intellectual disabilities. It is also why there are distinct facial features such as the characteristic almond-shaped eyes. It is also why there is a higher risk factor for Alzheimer's disease. While I am worried about my Aunt Peggy and what the upcoming years may hold for Ellie, I am extremely hopeful about my daughter's potential and about all of the various opportunities that will be available to her. I do not know the future, none of us do, but I do know that I am going to value these toddler years and each year after that.