Saturday, 4 May 2013

Will autism break love?

I know I risk laying myself and my husband bare here but I can't help thinking this is extremely important. I want others to know its not just them.
The plain truth is not many relationships that involve special needs children make it the whole nine yards.

Before we became parents, Lee and I were loved up to the max. We were soul mates, true soul mates. I was searching for someone and he was waiting to be found. Our wedding was exceptional for how loved up the bride and groom were! We had teething problems but we very rarely shouted and screamed at each other once we'd found our groove. I can count on one hand the amount of full blown arguments we had. We wanted to be the best person we could be for each other. Like Jerry Maguire he "completed me".

We knew being parents would put a strain on that blissful lifestyle but we weren't prepared for what happened after the marriage. Miscarriages. Difficult pregnancies. Postnatal psychosis. Mental health diagnosis. Autism regression. Assessment and diagnosis for both kids. Bankruptcy. Alcohol dependence. Aneurysm and life threatening illness. A extremely destructive bout of MRSA. Massive hernia to fix and finally another mental health issue. You can read the drama HERE and HERE.

We've both seen counsellors in our time and both have wondered how on earth we are still standing. We are not really standing, more leaning heavily on each other now. And despite what we've been through we have been there for each other...even if we haven't always said the right thing at the right time! When I became very ill post natally Lee took leave from work to care for us all and when the children were diagnosed he had to leave work altogether as their behaviour became more regressive. So we have been together 24/7 for the last 4 years. We like it like this.

Though we are strong together the cracks do show now. We moved through the acceptance process at very different speeds. A couple in our position very rarely feel the same emotions at the same time. One is ready to move forward as another one dwells on the past. One has a glass that's half empty while the others is half full. We were lucky neither of us were in denial over the diagnosis and we both wanted the same things practically for the kids but that starts to interfere as we move forward. Differences start to show. You start to lose reason with each other. Decisions become difficult. Debates turn into arguments. Who does what? Who does more? Guilt sets in as things don't work out how they should. Blame leads to resentment.

We haven't got this bad just yet but I'm acutely aware of the direction we could be going if we don't accept that the stress of this life, the monumental decisions you have to make regarding the care of your child, will take their toll on our relationship if we let them.

There are fundamentals you have to accept. You must work together. The same as with your children you have to pick your battles. Sniping is pointless. We've started getting frustrated with each other. We got no one else to vent to. We lost friends along the way so we have no one to turn to, but each other. That pressure is huge. How do you cope with that? 

Taking breaks is the answer but we do not get that opportunity. We would love to take time out just the two of us but with the two kids that's a lot of responsibility to give to someone else. 

But I dream that one day Lee and I will be able to spend a weekend together. To get to know each other again. Not to have to advocate, to assess, to monitor, to argue, to mother, to parent, to hold our tongue, to attend meetings after meetings. But to be together as simply Donna and Lee. Lovers. Soul mates. And friends again.


Crystal Jigsaw said...

It sounds like your relationship is strong enough to withstand the negatives in life. My daughter has autism but my husband does leave the parenting to me. I get frustrated with him at times for finding it so easy to switch off when issues arise and I'm left sorting them out myself, but it's always been the same so I'm used to it.

Keep going, you're obviously two very strong-minded people and made for each other.

CJ x

Pinkoddy said...

What a lovely post. It may seem hard but you sound like you truly do have love. Hopefully it will get easier. Now our oldest is 16 he is much easier to keep himself sorted. Now our youngest (most likely Autistic) takes our time we hope he will be the same as our oldest.

I hope you get your break together soon.

Rianna Moore said...

Your post is really so touching. I wish that day you are waiting for, come soon and you enjoy all the happiness in your life. Things will sort out, all you need to do is have patience.

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