If you are ever looking for an entertaining and poignant documentary to watch, I highly recommend, ” Bright Lights” that originally aired on HBO in late 2016. It’s the heartwarming story of the relationship between actress, Debbie Reynolds, and her daughter, Carrie Fisher. They had an extremely close bond that was sometimes complicated, but ultimately resilient and triumphant. The love that was shared between this mother/daughter duo was something I think most Moms and daughters would hope for: a type of love that can survive tragedy, heartache, mental illness, and drug addiction, while coming out on the other side of their relationship still intact. Carrie’s trademark humor is woven throughout this 90 minute treasure and is guaranteed to make you laugh, cry, and applaud. I guess you can tell that I really love their story, and have coincidentally seen this documentary a number of times.

I’m so glad that Debbie and Carrie decided to share their story right before their unimaginable passing in late 2016, (within one day of each other, no less). It makes me think that their hearts and souls were so intertwined, that they simply could not be apart. As untimely and tragic the death of both of these icons was, it was also a gift that I think some of us would not necessarily mind when it comes to our time to leave this earth, especially those of us who have special children. I honestly hope that Brian goes before me, but like Debbie and Carrie, I also pray that I would follow Brian 24 hours later. I couldn’t bear to be separated from Brian longer than that. I know this may sound morbid and horrible to some people, but I also think that my ( not so) secret wish is not necessarily that unusual. In fact, I’m positive that there are other special parents who feel the same way. I’m also aware that my wish may not be granted, as God may have other plans for my life, (I do believe God’s plans are always best), as well as for the timing of my death. Still, I don’t think it hurts to ask. I do ask quite often, by the way, as imagining Brian’s life without Jim and I in it, scares me to death…

The natural order of things is for our children to outlive us. One generation passes the torch to the next, just like it always has been and will continue to be. If Brian had been born a “typical” child, I would certainly want him to outlive me and could not imagine otherwise. But the fact that Brian has severe disabilities is a “game changer” and has significant ramifications if my husband and I were to die before him. Why? No one will ever care for Brian the way Jim and I do. No matter how well intentioned other caretakers are, it is simply not possible. Of course this makes perfect sense: no one knows a child like his or her parents. Parents know every square inch of their child from head to toe, as well as what is going on inside of their head, their heart, their likes, dislikes, fears, hopes, and dreams. In our situation, some of these things are not quite so apparent, though we continue to discover with Brian exactly what makes him tick. Brian does indeed have his own likes, dislikes, needs, and concerns. It is my greatest fear that others entrusted to his care will not understand these things when Jim and I are gone, no matter how well we spell things out beforehand. At this juncture, we don’t even know who “they are”, which invokes a whole other level of fear, especially because Brian is our only child.

Like many other special parents, we are watching closely, researching potential possibilities for later on, and praying A LOT, that the right “option” will become available for Brian when the time comes. We are hopeful and scared at the same time. The underlying dread of the future coexists with the present moment of today and time seems to bring the two closer together…Sometimes I can’t believe how quickly the 15+ years have elapsed since Brian’s birth, despite some very long days along the way that we thought would never end. There is certainly a possibility, though, that I will outlive my son. I have the genes for it: my maternal grandmother lived to 96 years old and my paternal grandmother lived to 102 years old! I try to eat healthy and exercise so that I can live to a ripe old age for my son. I can definitely envision myself still advocating for Brian years from now with special glasses, hearing aides, and other ” silver enhancements” that will keep me together in one piece when I’m an old lady, lol. A part of me, though, really can’t imagine sticking around THAT long, but then again.. The lifespan for people with Down syndrome is longer as well: the average age is now 60 years old, thanks to better medical care and life experiences. We will just have to see how everything ultimately plays out, which is of course the scary part…

At the end of the day, I don’t want to become paralyzed by fear when it comes to Brian’s future later on, hence, why it is good for me to address the “elephant in the room” in this type of forum, even if there is no current resolution. I’m putting my fear ” out there” and paradoxically, my fear is actually more manageable, even though it’s still quite present. We don’t know what the future holds; perhaps there are good reasons for that, as well as scary ones. As I look back on Brian’s life so far, there has always been and continues to be a “Higher Power” at work in his life, as well as in ours . I may not always agree with why things are as they are, and certainly wish they were easier. Yet, despite the fear and uncertainty, I have hope for what is still yet unseen. There very well may be untapped blessings/resources later on that we had never even considered or are not yet available, whether we outlive Brian or not… But there is one thing that is absolutely certain: without hope, it’s impossible for me to put one foot in front of the other. In the meantime, I don’t think God minds my ( not so secret) wish and will take it to heart every time I ask Him, which of course is my plan until further notice. 😊

Until we meet again, thanks for reading! 😊