Reflections on empty bedrooms.

On Friday evening I dropped my eldest off at the summer camp where he works. He will spend the next two months working with schools in the camp’s outdoor education program. For July and August he will be head counsellor at the camp.   This is the fourth year he has worked at camp and I know he loves his time there. Like any parent I am thrilled he is finding his way in the world and seems happy on the journey.

In late August he will dash home and pack up his things to head off to his fourth year at university. He attends university locally, so despite the fact the that he lives with friends we still see him regularly. I expect he will likely live at home again at some point in the future since he is making noises about grad school.  So to date the early stages of our transition to “empty nest” hasn’t been particularly traumatic.  But I know it is only a matter of time.

As I drove home from camp Friday it struck me that by the time my eldest returns home to live Matthew could  be living in a group home. We don’t know when that transition will happen, only that it is likely looming in our not too distant future.  As I drove it slowly dawned on me that this past school year was possibly the last time I will have all three of my children living under the same roof.  And for a few moments during the drive home I descended into a bit of a funk.  There was a sense of sadness that a really important chapter of my life was reaching its conclusion.  The steady four days of rain we had endured probably didn’t help.

Like many parents I am simultaneously excited and devastated about this gradual transition to an empty nest.  These two emotions, in particular, live in paradoxical tension with regard to Matthew.  On one hand the relief I know I will feel about NOT having to manage his care, coordinate his nurses, change his diapers, and so on, is pretty significant. I will able to plan and live my life without the ubiquitous demands of Matthew’s care, and I won’t live with this crushing sense of responsibility.

With  Matthew in care, I will be able to be selfish and place my needs closer to the top of my to-do list.  That is pretty seductive after 18+ years of placing Matthew’s 24-hour care ahead of almost everything in my life – including key things like sleep, showers, eating, family-time, and so on.  I am human after all. I am ready for a break.  However, existing in the same breath, is the simultaneous heartbreak of knowing that I will need to relinquish Matthew’s care to someone else – that the well-being of my vulnerable beloved son will be in someone else’s hands.   What if that someone else isn’t as attentive to detail as I am.  What if that someone else only sees Matthew as a job, rather than a human being. What if Matthew suffers because of my apparent selfishness. The anxiety and guilt is pretty crushing despite the hard fact that, even if I wanted to, I cannot manage Matthew’s care indefinitely.

And then there is the awareness that the rest of the world might be judging me as well, and that includes other parents like me.   I have heard fellow parents of complex children talk about their belief that placing any child in a group home is an act of pure selfishness on the part of the parent.  That parents who do so want “forget about their child and get on with their lives”.  As if we could.  Forget about our child, that is.  I know I won’t be able to.  It is unfortunate that even in our community, among parents who are equally burdened, we are quick to heap judgement on one another.

Life in transition.

This morning at 5:45am I jolted awake.  I had been dreaming.  It was the same dream that seems to be on a loop in my brain these days.  In this dream we have moved back to our first home we purchased.  It is a small four level back split that is not, and could never be, wheelchair accessible.  Everyone but Matthew can live comfortably in this home, and in the dream our other boys, indeed everyone but me, seems to be settling in reasonably well.  In fact everyone else carries on with life except me.  I spend the dream running around in a frantic display of rage.   I am The Hulk on steroids.  Everyone else in the dream sees my anger, but cannot understand it.  And so they walk on by. Or tell me to calm down.

The home of my dream is different than the one we purchased 20 years ago, but somehow I know it is a home we once owned.  What always stands out about the dream is not the house itself, but my anger.  In this recurring dream I am always seething with an anger that I never express in my real life.  I am mad at everyone and everything and the anger boils out of my mouth and body in such a way that I don’t recognize myself.  But yet I know this raving frantic woman is me.

I am no Freudian dream analyst (if there are any out there please feel free to chime in!), but the dream itself doesn’t seem all that surprising.  We are beginning to assertively work through Matthew’s transition to adulthood, which will likely include an eventual move to a group home.  Yesterday I consulted with Matthew’s lawyer about a funding question related to Matthew living elsewhere.  Today we will head to London to attend Matthew’s first medical appointment as an “adult”.  Late last week we chatted with the home where Matthew will eventually move.  Matthew is presently in respite which is also probably stirring my emotional pot.  There are all sorts of signals in my daily life that we are knee-deep in a huge life transition that will fundamentally change my role as Matthew’s mother.  And while in real life I appear composed and logical about this transition apparently my deep-seated emotional self really isn’t crazy about all this change.  I have always thought Matthew’s move was sometime in the future, so it is clearly jarring me that we seem to have caught up with this hypothetical future.

The dream seems to be telling me things.  The fact that I return to a home I have previously known seems important.  The place is familiar, but not.  I know my way around, but yet still feel lost.  Other people in the dream seem to settle in quickly, but not only can I not settle, but I carry a rage that cannot be contained by my body.  In this dream-house I want to break things.  I want to kick things.  I want to throw a Herculean sized temper tantrum that would put all three-year olds on the face of this earth to shame.  In the dream the home is lovely but the only thing I can see is that Matthew is not there and cannot visit because of the damn stairs that are everywhere.  But for some reason, a reason that is not evident in the dream, we need to live in this house.   The others in my dream know this too, but seem less bothered.  They tell me to calm down.  They tell me that Matthew is nearby and I can visit.   They tell me that we can deal with the fact that he cannot enter this house.  But this only fuels my angered frenzy.  For me, the rage only settles when I wake up, and even then there is a bit of a dream hangover.

I have always known that there is a good chance Matthew might move away from home.  Sure we spent years thinking we could keep him at home forever, but in recent years as he has become larger and more difficult to care for, I have known a move was probably in Matthew’s future.  In the last year in particular it has become clear that even with the extraordinary support Matthew receives his care is reaching the point where we need a team of caregivers to ensure his safety.  Matthew is too big, his care too heavy and complex, to be managed by single caregivers these days.  At least not without risking the caregiver’s safety and well-being.  Keeping him at home would meet my need to have him close by, but in the end would be in no one’s best interest.   My head knows this.  My heart still seems to be working through the issue.

So these days we are working hard with a group home to develop a slightly less traditional way of living in a group home – one where Matthew will continue to be deeply involved in his community and with his family.  The group home leadership has impressed me with its commitment to working with us toward achieving this goal.  I am moving forward with great hope, though it is clear that my unconscious is still grappling with some issues.

Deep down I know that once Matthew is settled and I know he is happy I will likely calm down.  The dreams will end and we will learn to live our new normal – a life that might be healthier for all of us.  I will develop a new way of being Matthew’s mother, caregiver, and main advocate.  But right now we are in a protracted period of transition, part of which involves learning to share Matthew with others, which I clearly find very unsettling.