Our Nine Million Moments of Marriage

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This post also appeared in the Huffington Post UK.

By SB_FASD

Wedding anniversaries are bittersweet.  We look back at the pictures of joyful abandon. Younger, shinier – our faces full of love driving us toward a future we had just bought into publicly, standing before all those we cared most about in this world. It was one big whomping affirmation that yes, we were in this together now, forever.

A magic day. We felt uplifted. Friends and family literally sang us to the altar. Loved ones shared in the ceremony that made us a family unit as we waited for the children we knew we wanted. We ran on the beach, popped the champagne, danced and sang until dawn.

We said we did.

And we are.

But it’s not easy.

Life gets in the way. In families affected by Foetal Alcohol Spectrum Disorders, the pace of life can get so altered that before you know it, the whole rhythm is chaotic, off beat. And even very strong marriages can be tested and stretched beyond recognition.

It’s not because the love dies. It’s not because there are any regrets. It’s not to say that what has grown isn’t more real and more beautiful than what was there before. It’s just unrecognizable from those early heady days of skipping through the sunshine.  My sadness is that I wish our children knew those two more optimistic people. I wish I could find ways for them to know the light-heartedness and giggles that were such a part of the birth of this family.

Eighteen years later, here we are. We’re still standing.

But some days are so heavy that all I can do is put my head on a pillow and wait for a new one to come.

Moments can fly so fast and furious that I scream out too (all too often at my husband), when my calm is needed most.

We put out fires.

A sea of paperwork and logistics floods our weeks, leaving only a few weary hours when we should try to find fun but instead we retreat, as we let it all sink in.

Laughter gets muted as we try to avoid highs and lows and just keep things even rather than rocking the boat.

We are constantly trying to calm the seas.

Spices and new flavours fall off the menu. Soggy oven fries rule.

We speak less, play less, joke less, adventure into the world less. We become isolated – not just from all those cheering family and friends who gathered at our wedding but also from each other. That person we ran toward on our wedding day becomes the only solid partner we have in this struggle, the one who is in it, truly in it. So rather than holding them up, we knock at them when we want to yell, when we can’t hold it together any longer. When we need someone to blame. Some very rare couples are able to rise above this. Others fall apart due to the stresses. The rest of us muddle through, taking short cuts based on a whole lot of reserves of good will. It’s messy and disappointing at times. But it’s real. And rarely discussed.

We put on that happy face as we turn toward the world when really all we want is time alone again to reconnect, a babysitter so we can go out to a meal alone for no reason – or at least to celebrate our anniversary. We just want to watch a tv show and snuggle without worrying about wasting time that should be spent reviewing EHCPs or coordinating work schedules with medical appointments, without worrying about the 1,000 home improvements and tasks that should have been done but that we couldn’t get to due to some urgent something that had to be attended to. Without second guessing those moments that we wish we could do over.

We were easier as a couple to be around when all we had were our dreams and our love that we wore on our sleeves. I feel the weight of our family story when I sit with friends on those very rare occasions when we are out. Our tensions are very real and they are not going away. But this is us. It’s not always pretty.

And then one morning you wake up and it’s your anniversary again and you have no plans to celebrate, no cards, no presents because the last several days have been long and hard and there hasn’t been time or you haven’t made time to think about this. Or some combination of the two. A sorry state of affairs for the jet-setting couple that married in a resort town by the beach so you could go there regularly for anniversaries. As if.

You find eighteen years later that like the world-weary Velveteen Rabbit your once shiny marriage is rugged, tattered and perhaps stretching at the seams but it’s still lovely and still loved. It’s not exciting. It’s not wild. It’s tired and worn. And full of “I wish I hadn’t done thats” or “said thats”. It’s neglected and definitely taken for granted.

But it’s there. And that’s not nothing. In fact, it’s a whole lot of something. It’s 6,570 days of ensuring we did not go to bed angry at each other. It’s 157,680 hours of commitment and belief that together we can build this family. It’s 9,460,800 minutes all strung together through some very, very challenging times proving our faith in each other and in love.

We knew we wanted children and we could not have had two more amazing young souls enter our lives. This is not about regrets. No way. Every step along the way our children have made us proud. They make us better people. This family unit is so much more than we thought it might be all those years ago. Better. Bigger. There’s more meaning in each day than we could have envisioned.

Yes, wedding anniversaries are bittersweet. We look back at those young besotted lovebirds and we want to whisper in their ears, “You have no idea what you are getting into. You have no idea how hard what you are doing will be. Enjoy these moments of frivolity. You have the most important work of your lives coming up. You will be tested in situations you never knew you could handle. You are entering one of the most demanding and sometimes bewildering experiences of your lives. You are absolutely clueless. But you can do it. You will be amazed and proud of what together you can accomplish – shedding expectations and forging a bond that might become unrecognizable to you now but which will be stronger than you can imagine. Go forward, sweet lovers, you are strong enough for the new worlds you will discover together. Just hold on tight. You can’t fix what can’t be fixed but your love, this love, is the foundation on which futures depend. You can do it. You will do it. Together.”

 


And as a p.s. – to all those out there who are doing this as single parents or carers, you have my complete and utter respect. I don’t mean for a second to imply that marriage is the only way – there are many ways to walk this journey. In whatever form a home environment/support structure takes, great love is at the root of it all. Love matters most.

 

 

 

 

 

 

 

 

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Raising a Child With FASD Has Made Us A Stronger Couple

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By SB_FASD

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.