Tuesday, December 29, 2015

80 percent.

"How are you monitoring his seizures when you're head is in that book?" I asked my husband mid-morning a few days ago...

"Exactly the same way you do when you're Facebooking, online shopping and whatever else you do on your phone..." he snapped back, as if he was pulling his comeback out of his back pocket, almost relieved to have been able to finally use it.

Things are getting stressful. Things are progressing faster than we imagined.

Marriage is hard work. I know I've heard many people say that in the past, I've blown them of for using such a lame cliche over and over.

But, marriage is HARD WORK.

Staying married while having a child with severe and chronic health issues is nearly impossible work.

I remember when Dermot had just turned one. About the time I started reading a ton of books on parenting kids with special needs, I read a frightening statistic.

80% of all couples with special needs children divorce.

Holy shit. Those odds suck. They really suck.

Being a product of divorce myself I pledged to the best of my ability NOT to divorce, Now I'm reading this 80% statistic that blows me away. Granted I was only a few months into this special needs journey so there was no way to foresee what our lives would look like today.

But I can tell you that we are still married. It is not the marriage I dreamed of, It is not a story book tale of unconditional love, joy and commitment I expected it to be. But them again, whose marriage is?

My husband and I usually end up having heated "discussions" late at night after the boys are sleeping because there simply isn't a better time to "discuss" issues. Over the years these issues have changed dramatically. Gone are the days of whose turn is it to wake up with the baby or the talk about spending too much money on things we don't need. Now we weigh the pros and cons of allowing the orthopedic surgeon to insert metal rods into Dermot's spine to straighten the almost 70 degree curve, and if we decide to go through with it if we'll need to hire 24 hour nursing care for his recovery.

Last week we talked rather calmly about how tired we both were. How we feel as if we are on our own with our situation with Dermot. Most of our family are living their lives away from us, immersed in their own joys and struggles. We wondered to each other if we had communicated enough to our families how meaningful their time and visits are to us. We don't know.

I don't know.

I do know that in the last 13 years I have grown up in ways I could not have imagined. I'm still bossy, but now, I don't apologize for it. My intentions are clearer, I say what I mean. I get angry, but I know not to say too much until I think for a bit and almost always end up back in front of my husband explaining that I'm just so scared or worried or tired. And almost always, my husband receives me with acknowledging acceptance. Reminding me that we are in this together.

We are coming up on some hard decisions for Dermot's health that I don't want to make. We are living in our ninth year of having a helpless infant that needs 24-7 attention and care from at least one of us and we are worn out. We are sad, discouraged and resigned.

But we are still together.

Fuck that 80%...