Always and Forever

We were 19 when we met, 21 and 22 when we married. We were young and goofy. We had the habit of saying “Always and Forever” sometimes instead of “I love you.”

I was a hot mess when I met Jason, but thankfully God took things over and a little divine intervention led me right down the aisle and I married my best friend.

We will celebrate our 20th wedding anniversary in June. We’ve had more good years than bad, but I could argue that the bad ones are the ones that have shaped us into the couple we are today. Our toughest years were the year following diagnosis, the year my sister and his dad died, and the year prior to Rowen going off his feet (duchenne speak for the when he stopped walking).

The boys were first diagnosed 10 years ago. At diagnosis we were told how hard it would be on our marriage. It was an accurate statement. We’ve been through alot of ups and downs and are certain to be through lots more. Sustaining a marriage through rare disease has been like a dance. We move around or with each other depending on the stage. There are times we’ve danced alone and times we didn’t want to be on the same dance floor.

Diagnosis broke me. I was filled with a grief and pain and fog for the earlier months and first year. Our marriage suffered because I was so full of sadness and hurt that there was little room left for him. It suffered because I wanted him to be hurting as much as I was, I didn’t want to be alone in my pain, but I wanted his pain to look just like mine.

The first lesson I had to learn was that men and women react differently to grief and heartache. He felt broken too. The little boys that numbered nearly enough to field a basketball team would never play and that realization was minor when compared to the fact that he, like me, was scared they wouldn’t live long enough to experience a rich and blessed life.

He was hurting too, it just looked different for him. I was not kind or filled with grace when I didn’t understand his feelings and he stayed and he kept us going when all I could do was actively mourn the life I thought we would have and inactively live the life we had right in front of us. He later told me that watching me hurt so badly, killed him because he couldn’t fix it.

I came out of that mourning period convinced I would save our boys. I became super mom. I did everything. I found the best doctors, I found a clinical trial, I started the stretches, I started advocating, I started raising awareness, I, I, I… I did everything I could possibly think of to save my boys. But, you now what? I left him out. I alienated him. It wasn’t good for us because I was taking out the “us.” I needed to know I did everything, afraid I wouldn’t be able to live with myself in the end if I didn’t. I didn’t leave a lot for him to do and then I would get mad that he wasn’t doing what I was doing. Slowly we found our way, but it wasn’t without growing pains.

Then other life hit; non-duchenne life. We both lost people close to us and we learned that there is more than one kind of grief and to balance both we had to lean on each other. It wasn’t as easy as it reads. He was angry that his dad was gone and I was shell shocked that my sister was gone. Love and faith did make it possible to learn to take care of each other and our family when the other needed time to grieve.

During all of this we were also fighting the FDA for drug approval of a drug we believed was helping sustain our children’s health. While we were trying to come to terms with our losses and fight the biggest fight of our life, we had People magazine and Newsweek and every local media outlet interviewing us and recording our reactions as we were trying to make our way. We never really had a minute to stop. We felt like we had to do it, to use our story to try to save our boys. It really does feel like life or death sometimes in rare disease and rather than let our boys down, we let parts of ourselves go. But, I remember his self sacrifice and he mine. I loved him more because of it.

We did good for years. We watched our children grow and learn and change, we cheered our oldest through high school and into college.

Then parts of Duchenne that we were not prepared for hit us like an anvil. Our oldest son started suffering from anxiety. He was afraid to sleep and Jason and I did not sleep very much for nearly a year. I was with our son because it was the only thing that would help him sleep and he was on the couch. My husband and I were never together, not even for sleep. It wasn’t healthy for us. We drifted.

This was also when our middle son was approaching the day he would no longer walk. I grieved that hard. I was mad and it was easy to stay mad because I forgot the first lesson I learned and wanted Jason’s hurting to look like my hurting. We responded in different ways. We spoke only to talk about what we needed to do to get our kids through the day (what’s for supper, who needs to be here, what still needs to be done, etc). There were lots of tears and arguments during those months.

Then the day came when our son did stop walking. It was sudden, a broken leg and over night we had to figure out how to bath and shower him, dress him, care for him because he could not do what he had done even the day before. I could not do it alone. I often wonder if my husband had been waiting almost a decade for me to realize that. And he was THERE, BIG TIME.

He became the one to bath him, because he was the one strong enough to lift him. He became to one to dress him and help in the bathroom. The tenderness and compassion I see when he cares for our son is the most beautiful thing I’ve ever seen. A loving, caring father. I fall more in love with him everyday watching him.

It doesn’t get past me that Jason, a loving earthly father, that patiently waited for me to let go of the reings, did just as our heavenly father does when he waits for us.

My husband is so strong, but at a breaking point a couple weeks ago, I wiped tears from his cheek. Vulnerability is changing us. That week a couple weeks ago was hard. It was full of sleepless nights, lots of tears, and ungraceful moments. One night, at nearly 2AM I fell back in bed where he laid awake. I had been with one of the boys. Jason asked how he was. I answered and then said, ” Our life is only going to get harder.” He response was “yes.” Exhausted, we fell asleep without another word.

Our life is our hard. I read it phrased this way recently and it is true: we are watching our flesh and blood deteriorate in front of our eyes. It will always be hard.

We try hard to give our boys the best life, full of love and laughter and memories. We see so many beautiful things. We’ve been on the receiving end of beautiful gifts. We have met so many other families living relentlessly hard experiences but relishing in successes and joys. We know people celebrating everyday. We have people celebrating our boys with us. (I went to noon Mass today and it was being offered for my son. I had no idea.) We have a home we love and doctors and providers that are amazing. We have a goofy dog. We have love. We are blessed by this hard life. We are blessed to share this life together.

Marriage is not two perfect people. It is two imperfect people loving each other through imperfect situations. We continue to grow and learn how to do this life. We honor the promise we made each other on our wedding day, always and forever.

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