Divorce in Rett syndrome families

Does having a kid with Rett syndrome increase the likelihood of divorce?

I think I forget sometimes that there are readers here who are actually following our journey and care about our life with Grace and Rett syndrome. I can be guilty of only coming on here to share the really big stuff.

But I’ve forgotten to share the biggest thing of all.

After Rett syndrome itself, it’s the biggest thing to have happened to our family.

Steven and I got divorced in March.

It’s hard to know the real “why” behind this happening. That is, what was the seed that germinated and grew into this event? I don’t totally know. Most breakdowns in relationships are just “death by a thousand paper cuts”. It could have something to do with the strain that special needs parenting brought to our lives, but perhaps not. We’ve always pretty much killed it as parents with an especially needy kiddo and had a great support system.

We got to go on cruises, vacations, climb mountains, have date nights. We weren’t especially limited in our ability to “have a life” outside of taking care of Grace.

41% of first-marriages experience divorce as it is (without the special needs element). It’s very difficult to know whether there’s an increased rate of divorce with special needs children in the mix. Previous estimates of 80% have been debunked. Other studies only looked at a snapshot in time versus the whole lifetime of a marriage.

Perhaps having an intense focus on something outside of ourselves can strengthen a marriage and give it purpose? Maybe the rate is even less than with typical marriages?

At the end of the day, the only thing I can really think to say to wrap it all up in a nutshell is that over the years, who we were as people fell out of alignment. Our basic life values, political views, religious beliefs and general approach to life became so vastly different that it was no longer compatible with continuing in a marriage relationship. Could have had something to do with Grace, but I suspect it was just general growth which saw our vines stretching toward light from suns in different solar systems.

It shouldn’t really totally be a surprise since I was 18 when we married. Show me someone in their mid-30s who is the same person they were when they were a teenager.

Reading about the process of divorce with special needs kids, and the difficulties parents have seeing eye-to-eye makes me appreciate how well Steven and I did working through the whole thing. We used just one lawyer and came to our own agreements ourselves with regards to a parenting agreement and financial settlement. We did this over the kitchen table and the lawyer just did the paperwork much like an accountant would do your taxes for you.

You can definitely do your own divorce, but we opted to pay an attorney to do this. It took 9 months from first acknowledging that our marriage was death rattles to the divorce being final. We lived together as a family the whole time and for 3 months after it was finalized.

Grace now has 24/7 nursing (which I’ll discuss in another post soon) and we’re the first family the nursing agency has where the child travels between two households. Every family they have with separated parents, the child in need just stays with the mom. We worked to provide Steven’s home with the same equipment she has at my house and he’s very dedicated to having her there during his timesharing periods. Having her cared for by the same nurses at both homes means a continuity of care and limits miscommunication between us about what she needs at any given time which limits the chance of conflict for us.

Mostly, we’re “still friends” as much as any divorced couple can be. We still laugh at stupid things and have a drink once in a while and talk about our forays into the dating world (aye yie yie) and actually, our communication skills have gotten better now that we’re no longer trying to manage a marriage on life support.

All’s well that ends well.