Today is my husband’s birthday. He bought his own presents. He didn’t wake up to coffee in bed. There was nothing – I didn’t even manage to wrap the presents he had sent to himself via Amazon. Really, it doesn’t get more pathetic than this. But I have my excuses. We were at the school yesterday for a couple of hours. Our son has been home half days because he is struggling in this post-operative week. As a result, we have been juggling work commitments, balancing the needs of our elder son (who has Chronic Fatigue Syndrome/ME), and – I kid you not – a dog with a concerning cough. Life is – as usual – happening fast and furious. We are as ever facing our days left-footed.
I explained to my husband yesterday that I needed more time to wrap things, that I hadn’t actually managed to do anything to make his day special. He smiled at me and gave me a hug.
That’s when the thought struck me – this FASD journey affects our expectations of each other too. We have all had to change the way we look at this world. It is not just about changing how we interact with our son with FASD. It is also how we interact with each other.
FASD has been brutal on our marriage. The unpredictable flare ups. The chaos. The what-on-earth-do-we-do-now moments. The concern. The defensiveness. The tiredness. The stresses. The depression. The alternating moments of determination and fatigue. The feeling that whatever we do is never quite good enough.
The times when we have entirely different instincts on how to handle a situation. The times when we hit a wall and need to shout, and rather than yelling at a little one, we aim those words at each other because that’s the ‘best’ option in a horrid situation.
Yes, FASD can tear at relationships. Like water dripping on solid rock, each of these tense moments leaves its mark even on the strongest of relationships.
And yet, here we are. We’re still standing. Somehow. And we are better than we were before. Perhaps not as obviously shiny and happy as we once were in those days when we were courting. We were an older couple to start with. Maybe because we weren’t kids ourselves, we have always been grounded. Though once upon a time we were carefree enough to hop on airplanes with the blink of an eye to meet each other, to visit others. We had flexibility and funds. We were living the life.
Children were a precondition. I remember standing on a bridge early in our romance, laying it out – saying although it was awkward – that I had to know if he saw children in his future. I was in my mid-30s. I was confident enough not to delude myself that this was a question that could wait. I will never forget the feeling of elation I had when I realized he too wanted children, a family. We were engaged soon after. We even talked about adoption at that point (before we had trouble conceiving our first child, including a horrible possible ectopic pregnancy/miscarriage, before the frustrating infertility when it came time to try for our second). My husband is adopted. I always said I would adopt one child for every child I gave birth to. It seemed natural for us to complete our family via adoption.
We had already decided we could raise a child with disabilities when we refused the tests during my pregnancy, despite knowing we were in a high-risk category. We didn’t shy away when we realized early on that our adopted son was likely to have developmental issues. We knew, or thought we knew, what we were getting into even if it would take several years for our son to be diagnosed with FASD.
But did we know then how our social life would erode? How those lovely meals out and trips to the movies, to the theatre would evaporate? Did we know we would be so bone tired every night we could barely decide which TV show to put on, forget about long meals laughing over candle light like we used to? Did we know that we would stop traveling together, that our health would deteriorate, that we would take such shortcuts with each other?
There was no way we could have known.
But I am not writing this as a downer. I am writing this because of the beauty of the moment yesterday, when I told my husband I hadn’t managed to get him a card nor had I even wrapped the presents he bought for himself for his birthday. That moment when he understood. That closeness that we have that goes beyond the flirtations of a night out on the town. That hug by the coffee pot this morning when he jokingly asked where his presents were.
We have always said that we will be great sitting in our old-age rocking chairs side by side, making snide remarks about the state of world affairs. We are becoming people, through this journey, that we never knew we could be – deeper, more ‘real’, more compassionate, more questioning of ourselves and our expectations than we might ever have imagined.
We have been washed over by a love that is stronger than we could have envisioned – fierce in its protectiveness of our children. We have learned as a couple to find sustenance in the awe that we share of our two amazing children who show us every day what courage is, what it means to face this world bravely and with dignity.
As a community we probably don’t talk enough about the toll that FASD can take on family relationships and on marriages in particular. I am writing from the perspective of adoptive parents, but every single family relationship can be stretched – especially if FASD is not understood, if the strategies are not taken on board.
It isn’t easy, but we are better people together and individually because of this path we are walking. Our marriage is stronger for this journey. We make accommodations every day, not just for our son with FASD, but for each member of the family. In learning that patience and compassion, hopefully we are growing into the kind of adults we always wished there might be in this world.
Happy birthday to my better half. Maybe I didn’t get you a card, but here is a blog post instead.