I had planned to share another guest post today but I have a story that needs to be told and I can’t wait.
Today, Captain Awesome and I are
celebrating our 14th anniversary wanting to stand on top of a mountain and yell at the top of our lungs “We freaking did it, hell yes, 14 years, boom!” On Nov 6, 1999 we stood in some fancy clothes and made a bunch of promises that we really meant to keep, even if we had no idea what that really meant. At the time I was sick. I had medication under my tongue to keep from getting diarrhea during the ceremony. We went straight to the Mayo clinic from the wedding site, it was a shitty way to start things out (Chrones disease humor). It was a long first year, we made the most of it, playing hangman in the ER almost every weekend. We joked that we were getting the poorer and sicker part of the vows out of the way.
Enter Claire being diagnosed with Rett Syndrome. That made my GI issues look like childs play for doctors. We couldn’t have prepared for how that would have effected us as a couple. I responded with optimistic denial, I focused on loving Claire for who she was and nothing else. Jared went through it differently. He was much more frustrated and angry, he checked out and tried to look away. Nobody talks about the part in marriage when your spouse hates your child for ruining their life, how do you deal with that? How can you love somebody that hurts you on levels that you never even knew were there?
Grief is a funny thing, something that few are ready to handle. Jared and I spent years in marriage/grief counseling. Trying to sort it all out. There were plenty of times where we both just wanted to quit. There was a lot of anger and a lot of hurt. I had to learn to love Jared even when we couldn’t agree on Claire. We have had to figure out that, right now, we are just to tired to connect, it’s not personal, it’s not a lack of love, it’s exhaustion. It’s been THE HARDEST THING IN THE WORLD, to fight for it, to stay in the game, to stay together. It has also been the MOST REWARDING THING EVER!
I know that there are others of you out there on the journey, stumbling around bewildered in Rettland. Don’t let go of that person next to you. You might want to take different paths, you might see where you are very differently, you might feel like the person who looked so familiar now looks like a stranger speaking another language. If you can, stick together, fight for it. Find somebody who can translate and help give you some guidance. Staying together through the crisis, learning to love in the aftermath when nobody has much to give, that’s where the good stuff is.
We will now return to our regularly scheduled guest posting.