On relationships with a special needs baby

I wasn’t prepared to see how being parents to a special needs baby would change my relationship with Sam, not in the most fundamental way it has.  I know that parenting a special needs baby is difficult. I know it adds stressors. And you know what? I’m actually pretty lucky - Sam helps with Kai. Sam manages his stress and fears and grief and helps - he's the bread winner, he helps parent with Kai on the off hours, he's the king of bath time. And despite the gender wars of the division of labour, I do feel extremely lucky to be with a guy who helps as much as Sam does. I know that not all special needs Dads respond like he does.

In saying that, I was completely unprepared for how little us time we’d get. When there’s a spare set of hands to mind Kai we take advantage of the time to get everything we need done. Life admin, whatever on our phones, computers, with our brains far away from the moment. All the things we still want to hold on to, but don't have time for. Now that our lives are not our own, my spare time is competing with Sam's spare time, which also competes with 'us' time. 

We started co-existing, which just blows my mind. We were the tightest, strongest of couples. Now, under the stress of living with special needs and everything that goes with that, we’re a little further apart than I expected. Still strong, still tight and I still have all the feels, and when it counts Sam’s absolutely there. But I was unprepared for how the ongoing strain would change things for us. How easily we started sniping at each other, how the need to get things done with way less time pushed out all the usual relationship-y things we used to do.

We’re rearranging so we can make time for us (namely, we hopefully soon will have a nurse come by one evening a week so we can have a few hours together). The biggest help has been therapy, I think. We have a therapist come out to see us every two weeks, so we can talk through how we’re managing. It has the added bonus of ensuring we’re dealing with all the things instead of quietly leaving them till we’re at wits end. We didn’t intend for it to become a relationship tool (when your baby is on palliative care and you’re talking end of life plans your relationship pretty quickly becomes a non issue) but the more we’ve talked about how we’re managing all the special needs craziness, the more it’s exposed the tiny stressors in our relationship. 

I’m grateful we have the place, and time and help to manage the tiny cracks, to stop them from becoming ginormous craters. I’m lucky that Sam is even open to therapy, as I know so many wouldn’t be. I’m grateful that we’re managing. Therapy feels more like general life maintenance, than as if we were on the cliff edge.

It’s funny the things that help. I also don't think therapy deserves the stigma it has, but hey ho. I'm glad we've got access to a therapist, and I'm glad we're managing all the things.

It makes a difference, you know?