I grew up in a large family. A very large, loud, boisterous family. Not my immediate family mind you, as I was an only child, but rather, my extended family. This included all of my aunts, uncles, and millions of first, second (and sometimes) third cousins that I would interact with on holidays and special occasions. The key here is that I only really interacted with them on holidays and special occasions, which meant that the majority of my youth was spent in a relatively quiet home. That is, when my mother and father weren’t fighting for a variety of reasons, but that’s for another time. I rather enjoyed the peace I experienced as an only child, being naturally more introverted, at least when I’m home. It wasn’t so bad being alone for the holidays then. But when the holidays rolled around, be it Easter, Thanksgiving or Christmas, whether at our home or on the road in the Chicago suburbs, I felt a ton of anxiety, being with so many people. So many people in one house, so loud, constantly moving, telling stories, singing, even dancing sometimes, it was always just too much input for my sensitive brain.
Nowadays, I have my own family, a family, interestingly enough, of “onlys”, as myself, my wife and our special needs son are only children. That makes for a small family, just like what we both grew up with, without a lot of extra noise and activity, except for the extreme amount that is generated by our ever active son. But now, the extended family, the ones I used to cower from when they would burst through the door, the ones we would have to trek to another town to visit, or in my wife’s case, another state, have for the most part gone their separate ways. While we still maintain some basic contact (which today is defined by Facebook comments and the yearly Christmas card), the holiday season is now essentially, just about us, save for our mothers. This might help with planning and shopping at the busiest times of the year, however it has also cause me a great deal of reflection, specifically as it relates to our son, who, due to the nature of his autism, will need to be in a supported environment of some form come adulthood. This is something we are preparing for now, even at the tender age of just about eleven, yet there are some facets of his journey into adulthood that give me some of that good old holiday anxiety, and it revolves around just that, the holidays and what they will look like years from now.
I experienced a few windows into the possible future of our son’s holidays over the last several years, both when I interacted with some special needs adults from a group home who attended our old church weekly, and also from a short stint working for a group home as well. In both cases I got to interact with some lovely souls, some still in their teenage years, others fully grown adults, and some that were elderly. While all of them seemed to be relatively independent, it was clear that they had a real need to be in the living situation they were in, but being a special needs parent I couldn’t help but wonder about their life’s journey and how they got there. I wondered about their families, where they might be, and in the cases of the elderly folks if they were even alive at all. For the teenagers I worked with, I knew that parents were still involved, although some lived far away, even out of state in some cases. Their families did come to visit, I knew that much, but I never did find out about the older adults, and that truly gave me pause when I considered my own son in such an environment someday. One memory that has really stuck with me was the day that we went to the pool on the campus of where I worked for some recreation time, and as we were in the locker room getting changed, an older gentleman, who had no language except for the happy squeak he made as he gently tapped me on the arm as he walked by. I was struck by a vision of my own non-verbal child years from now, his body older and hair much grayer, but still with the characteristic verbal utterances like my son that we’ve all gotten used to. He was once someone’s small child, he was once someone whom his own family might visit for the holidays, but now, he may not have anyone left, just as someday my own child won’t, and I fear he will be alone for the holidays.
It may be the easiest thing in the world to get discouraged when you consider this kind of future for your child, but as my wife and I have discovered, the best approach is to first, lean into your faith with all of your might, and second, get moving and proactive. So where my child may not have extended family to depend on, we create relationships with those people and places that are most important to us, starting with our church family. We are blessed with a community that accepts our son just as he is, where many other special needs families also call home and we have been intentional in reaching out to them by creating a small group for special needs families. We also host meetups and get togethers for the moms and dads of special needs kids in our area as well, and while neither of these is consistently attended by folks, we have nonetheless had some real, lasting genuine relationships with folks who get us and who we get. Not everyone may have these same opportunities I realize, as your church may not be as welcoming, or you may not have have the same amount of special needs families to build relationships where you live, or maybe you have tried, and it just didn’t work. My words to you Christian then are: press on. Press on just as scripture has commanded us to do in our own faith journeys, and continue to seek the victories that God has prepared for you. I will tell you truthfully that many days are lonely, regardless of what steps we have taken. Many times I have sat and wondered about the things I’ve discussed here, and felt those feelings of despair for me and my family, that some day time, age, and the inevitable will catch up to us and we will no longer be there for our child.
There is hope. There is the hope that despite us not being present, there is the hope that someone will take our place, someone to provide a friendly smile, a warm hug, a gentle touch of the hand on our beloved children. Someone who will be there with to share a delicious holiday meal with them, someone to enjoy the warmth of holiday decorations, the light of the Christmas tree, maybe even a gift on Christmas morning so that they may know the love of someone still in physical form. Someone to make everything feel ok. Lord how I pray for that someone, or better yet, how I pray for many to come into my child’s life when his parents step out, how I pray for that grace to come over our family. Lord please do not let my child be alone for the holidays.
I often have a vision of myself in my old age, many years from now, when I am like that gentleman I described earlier, much older and grayer, not able to get around as quickly, now alone because everyone that I grew up knowing, including my spouse, is now gone. I see myself sitting on a bench off of the nature trail near our home that my son and our huge dog walk to frequently. I’m sitting and looking out over the large expanse of prairie, contemplating my life, reflecting on my many years and those no longer with me, a tear running down my cheek. As heartbreaking as that scene is, I’m teaching myself to not run from it but rather embrace it, as my tears do not need to be of sadness for what I’ve lost, but tears of joy for what I’ve had, what I still have in my relationship with my now aged child, and the joy of the time we still have together. I see myself now on the bench with him, my wrinkled hand gently caressing his head as we think about all of the wonderful memories we shared, and all of the love that still, in this place and time, reminds us both we will never be truly alone. We press on then, to the promises we have been made to believe in, of that gentle hand reaching down from heaven to provide the gentle caress we so desperately need, and the hope we have in the world to come.