For better, for worse...

When thinking about starting this blog and coming up with the name 'Living our Fragile life'. I wanted to try and portray to people that having children with a disability affects ALL aspects of your life, even your marriage.

This July, Matt and I celebrated being married for 15 years. woohoo!!! 

The story of us

So lets take a trip down memory lane. How did we become 'us' and what has the last 15 years looked like (in a nutshell)?

Friends at University
Becoming more than just friends
We broke up
We got back together
Got engaged
Got married
Moved through four different homes
Enjoyed one pet
Worked through five jobs
Renovated a house together (slooowwwly doing another)
Being involved in a church together
Experiencing nice holidays
Five years of just us
Three beautiful healthy baby boys
Lots of camping holidays
Navigated preschool and school life (well, navigatING)

and lets be really real here...

15 years of the many daily mundane moments :)

The promises we made

On Saturday 14th July 2007 Matt and I stood in front of family and friends and made promises/vows to each other...

I looked into Matt's eyes, held his hands and said:

'I, Abigail Rachel take you Matthew David to have and to hold from this day forward, for better or for worse, for richer for poorer, in sickness and in health, to love and to cherish, from this day forwards until death do us part.'

And I meant every single one of those promises then and and still do now. But never have those promises been more tested and brought into the forefront then in the last four years.

Our story now

I don't know if I've ever really been someone to dream but I definitely had a picture, a story in my mind that I assumed, expected or hoped for. Raising two children with additional needs was not what I saw. You might think that having children with additional needs is surely just about the children and how it effects them, so you might be wondering why are you writing about your marriage? 

When Matt and I found out about Micah's diagnosis and as we looked more into FX, one of the big things we kept reading about was that the divorce rate of married couples with children who have additional needs is significantly higher than if you have children who are neurotypical.

And I think over the last four years you can begin to see why. In addition to the normal frustrations, stresses and strains that can come with being married and raising three boys, we are now dealing with the heartbreak of finding out that two of them have Fragile X Syndrome. We have faced mental health issues, crisis of faith, confidence lows, changes in personality/character, grief, facing a big unknown. Our time has been consumed by research, ongoing TAC meetings, EHCP applications and meetings, doctors appointments, the scares of epilepsy and hospital admissions. Then there's navigating how different sibling relationships work and what extended family relationships look like, managing behaviours and emotions, dealing with unpredictability, feeling extra responsibility for progress being made and milestones being met, work responsibilities, being unemployed. mental and physical tiredness/exhaustion. Oh yeah and the big elephant in the room about what on earth this means for our and the boys' future.

Our marriage has suddenly got a whole lot more serious. The responsibility seems to have gone up a few levels. The heartbreak is daily, grief lingers and the permanence of this disability looms over us. So when I think about those vows now, I think about how broad they are, so broad that they cover everything in a way, but so broad that they can't cover everything. There is such simplicity in saying and truly meaning them, but not fully understanding the magnitude of all the different things that can test them; small but constant day to day details, feelings, grief, heartbreak, frustrations, sacrifices, differences, changes, adaptations. There are times when you are 100% consumed by your children, their disability and your grief that your focus and joy for each other can get lost or buried.

Marriage is hard work

When I was younger I was under no illusion that marriage was easy as I was acutely aware that marriages breakdown. But I think (or have learnt) that until something is happening directly to you, you don't fully know the extent of its impact, or you just think 'it will never happen to me', 'it won't be like that for me' or 'we're different' etc.

Growth in the midst of grief

So what can we do? When those vows, the promises we made, are being put to the test but you both want to keep going and keep growing in your relationship, the advice we've had over the years has been hugely important, now more than ever:

Try and find those moments to laugh and to have fun with each other
Try to prioritise quality time together
Try and remember you're a team, trying to work together - be for each other not against each other
Try to be ok with one another when you think/deal/grieve in different ways
Try to communicate with each other as much as you can.

The future of us

A few years ago I bought an ornament, it had no deep or sentimental value to me but I liked it. It's a grey stone star and on it is written 'Tell a beautiful story'. It sits on a shelf in our bedroom and is easy to see. The reality is (which the last four years have really shown us) is that the beautiful story we thought, imagined, expected has changed. We had no idea back in 2007 that our story would look this way, no idea of how something like this would and will continue to affect us, change us, test us. Our story is incredibly different to what we thought,  completely unexpected and one we are still very much getting our heads and hearts around but... it can still be beautiful. 

To Matt

You're still my favourite human.

Love Abi x