If you haven't been privy to all the buzz, a film aired on HBO last night titled Monica & David. It's a documentary, filmed by the cousin of the Monica in the title, showing a glimpse into the lives of two adults who have Down syndrome. Monica and David, the film's subjects, met at their adult life skills program, fell in love, and got married. The documentary shows the wedding, and a window into their life together for the year after their wedding.
I'll just say right off the bat that I did not find this film uplifting. Which is not a bad thing, just a fact. It's a film that makes you think. It makes one ponder the realities of life as an adult with Down syndrome, and the realities of their families. I was crying at the end . . . but not for the same reasons I cried when I watched Deedah . I find myself in a funk this morning, turning the film over and over in my head.
Most of the parents I've gotten to know through the Down syndrome blogging community are, like I, mired in life with a baby or child with Down syndrome. We are still striving, working towards something, full of hope and fantasy and idealism about the future. It is next to impossible for me to visualize Finn beyond babyhood/young childhood. That is not because he has Ds, it's just how it's been with all of my kids - I just can't fathom them very far beyond where they are now. Each step in the progression of life brings a new reality concerning all my children; ten years ago I would not have been able to imagine Kevin as a teenager, and yet, here he is today, a bona fide teenager. I can't really picture him as a man, but one day he will be just that, as will Finn.
In Monica & David, they've arrived. They are the adults that our kids will one day be. Not that our kids will be exactly like the two individuals featured in the film, but probably something somewhat close to that. Like all people, typical and atypical, they will continue to progress in their abilities and knowledge, but the progress will be measured in much smaller increments. For all intents and purposes, they are where they will remain.
So what I found about the film is that it's a very honest look at the lives of adults with Down syndrome. It was not a film meant to sugar-coat, and it doesn't sugar-coat. If you see the trailer or read a blurb anywhere summarizing the film, you might be led to think, "Oh, wonderful! Two adults with Down syndrome getting married and carving out a life together for themselves." But that would not be a completely true synopsis. Yes, these two individuals with Down syndrome fall in love and get married. And the love and affection and devotion between them is incredibly inspiring and moving, it really is. But what you also get to see is that they dream of having children just like a lot of other married couples - yet they can't, and they don't even know it. What you see is that neither of them seems to have a good grasp of what Down syndrome is, or that they have it. What you see is that yes, they are married, but they live with her parents and are almost completely dependent on them.
None of this is bad. It is what it is. But it's certainly eye-opening.
I think so many of us who at this stage have very young children with Ds hold onto the fact that our kids have been born in a different era; so many advances have been made in medical care for individuals with Down syndrome, as well as therapies to address their developmental impairments. A lot of us hope - some even adamantly believe - that it will be different for our kids. That if we do enough therapy, feed them the right concoction of vitamin supplements, and send them to the right schools, it will be different. They will one day hold real jobs and live independently. That's the ultimate goal of all this work we're investing in them now, right? That they will one day live independently.
Me? I don't pin a lot of hope on that for Finn. It's not that I'm a pessimist - I consider myself a realist. I believe it's possible that he'll one day live independently, but not highly likely. And in all honesty, I am okay with that. I have pretty much accepted that chances are really good that he will always be dependent on us. And gosh, we have the perfect setup: we actually have a separate apartment downstairs, with its own kitchen and everything. If I weren't in my right mind, I might think that some divine force was at work when we bought this house five and half years ago - long before Finn was even a twinkle in our eyes.
What scares the shit out of me is knowing that we are 40 years older than Finn, and if he lives to be in his 60s, well, it's not hard to do the math and realize that we won't always be here for him. That, my friends, sends a cold jolt through me at times and keeps me laying awake at night in semi-panic. I can't bear the thought of him ending up in some institutional setting, so I can only hope that his siblings will be able and willing to look out for him when the time comes. But what about their future spouses? What if they're not willing?
Auughhh. The stress of this will surely take years off my life.
And you know what? What really makes me sad about it all - and ultimately what I think left me feeling sad about the film - is that this honest dose of reality makes it really difficult to advocate for the lives of babies with Down syndrome. I suspect there are three main camps of people who will watch Monica & David - Families of adults with Down syndrome who will be able to relate on many levels; - Families of babies and young children with Down syndrome who will feel like a bucket of cold water has been thrown on them; and - People who have no relation to anyone with Down syndrome who might have their feelings confirmed by the film that it's not a life they'd want - to raise a child who will always be dependent.
I know that Finn's life is worthwhile, as are Monica's and David's lives. But can the world see that? No amount of talking or advocating is going to convince anyone. Unless you're living it, it's just really hard to fathom.