As most readers know, my husband and I began transitioning Matthew, our severely disabled 18-year old son, to group home living about ten days ago. I say “transitioning” because while officially he is a resident of a group home, he still spends a fair bit of time at home with us and I remain actively involved in all aspects of his care.
I expected to be devastated. I expected to be non-functional for days. Everyone who knows me and knows how committed I am to Matthew predicted my utter collapse. My sons, Robert and David, anticipated that I would spend days moping around the house periodically falling into fits of uncontrollable sobbing. Thus far that hasn’t happened. I am surprisingly okay.
I have spent some time thinking about why I am okay. During my bleaker moments I wonder if it is because I have become a callous, hardened mother who is resorting to a coping mechanism of muting my feelings in order to survive. And while there is no doubt that on the day he moved I was more numb than anything else, I don’t think this is what has happened. I think my coping is largely due to the fact that this transition has been years in the making and has been intentionally structured to be as successful as possible. It also helps that I am working with good people at the group home who are equally committed to making this transition healthy and successful.
But then there is the guilt. Holy crap, do I ever feel guilty because I am okay. While we spend a lot of time talking about ensuring caregiving mothers remain healthy, there is an alarming and deeply destructive undercurrent within our larger society that expects mothers of complex children to be a sacrificial group of untold resilience. Society sends this damaging mixed message to overwhelmed, exhausted mothers that offers (token?) sympathy, while simultaneously expecting moms to be these sacrificial super martyrs who have virtually no limits. In fact Facebook is inundated with inspirational stories (inspirational porn!?) that honours mothers who have set aside all sense of self in order to care for their child.
Stop and think about it for a moment. How often do you see memes, or Facebook click bait that celebrates mothers of complex children engaging in self-care. How often do we see a video montage of a mother of a child with complex needs taking a nap, attending a yoga class, reading a book, or having coffee with friends, all while allowing someone else to care for their child? I haven’t seen any of these on my my FB timeline! Rather, I am more likely to see memes that comment on the difficulty of life and the supernatural ability of caregiving mothers to keep putting one weary foot in front of the other over and over and over and over…..as a sign of their utter devotion to their child. It is unfortunate that we don’t also share the message that devotion to a loved-one can also involve self-care and self-preservation.
And while I know how utterly damaging and unrealistic these messages of seemingly superhuman strength are, it is hard not to take them to heart at times. I find that during moments of self-doubt I begin to wonder if I am somehow less of a mother to Matthew because I am okay – because I have taken the time and energy to not only protect Matthew, but to protect myself. How freaking selfish can I be?
There is this nagging sense that if I was truly a devoted mother I would be destroyed by his leaving. And that his leaving would have only happened because I was utterly spent – having reached the utter finite endpoint of my ability to care. The message that society subtly sends is that good mothers of complex children need to have reached utter collapse before entertaining the notion of allowing someone else to care for their child, and when that happens they are expected to be a sobbing mess unable to cope with the separation. Anything less means a less than committed mother.
Years ago I promised myself that I would not allow that to happen. I promised myself that I would not allow myself to reach collapse before I contemplated Matthew’s move to alternative living. I truly believed, and continue to believe, that it is in Matthew’s best interest that I remain healthy enough to manage the transition constructively. And rationally I know that I am doing the right thing for everyone – me, my family, and most of all, Matthew.
But as I sit here and reflect on the messages of weary super mothers scrolling across my FB timeline juxtaposed with my “okay-ness”, I find I am struggling with a profound sense of guilt. Am I really a good mother if I have allowed someone else to share in the care of Matthew in a more significant and permanent way? Can I really be a good mother if I am okay with this move???
Of course the answer is yes. But I don’t just want a ‘yes’ for me. I want yes for all mothers out there contemplating how to care for their high-needs children over a lifetime. I want society to not only celebrate when women work hard to care for their loved-ones. I want society to celebrate, heck I want society to jump for joy, when women and mothers also work hard to care for themselves.