There Are Years My Eyes Leak

When my son was little and cried he would tell me that his eyes were leaking. I’ve always remembered it.  

Although this year is only half over it has been a year full of leaking eyes. And it feels just like that.  My eyes are leaking.  I’m not crying or sobbing (most of the time).  They are silent tears that simply slip over my eyelids. They flow easily, sometimes because of a recovered memory, other times with no warning at all.

As I prepared for this blog I remembered other years when my eyes leaked in response to life I was experiencing.

I remember being a 15-year-old kid, living in a foster home on a farm just outside of my hometown.  The foster home was fine.  I liked the foster parents well enough, there were two little boys living there that I adored like real brothers. But I was so miserably sad.

As the oldest of the 6 children living at home when we were removed and taken to protective care, I was the one questioned, the one that told all our family secrets so I wouldn’t have to go back.  The one that had to go to depositions and tell things about my parents.  I never wanted to go home, but most of my little sisters would have been very happy to go back.  I felt responsible for causing them so much misery.  I did what I thought was right. I was trying to protect them.

At 15 years old, I was not in a position to make that decision, nor was it mine. The state decided to pull us from the home based on the information they gathered, some of that came from me but they had other sources and probably knew more about what was happening in my home than I did.

At 15 though, I didn’t know that. I blamed myself and lived with immense guilt. I was broken. I was the one my mom and step dad singled out as the cause of all their problems. They said horrible things about me in sworn testimonies. The one that hurt the most and still hurts me a little to this day is that I was just like my biological father, a convicted serial killer living out a life sentence in prison.

I believed that horrible thing about myself for a long time; not realizing they were just trying to destroy my credibility. I remember many nights in the old farm-house, laying on the bunk bed below my sister with silent tears seeping through closed eyes. More than one night I fell asleep praying that I would not wake up the next morning. I believed the world and all of those around me would be better without me in it. More than that, I was sure I would never be missed.

God’s love was huge that year. He always answered that prayer “no.” He believed that I was good in this world, he knew the husband and children he would give me later would need me. Even when I did not believe it or know it myself.

Life went on. Eventually, my eyes stopped leaking at night and my prayers changed.

Fourteen years later, I was a college graduate, I had a good job working as a consultant to the Department of Education, I was happily married to a great guy, and pregnant with my 5th child. Life seemed too good to be true.

Then it changed. All of it. My son whose eyes leaked was diagnosed with Duchenne Muscular Dystrophy and in the following 18 months, Rowen and my unborn child Charlie would be diagnosed with Duchenne. My head hurt everyday. My eyes were dry and painful and yet tears fell from them everyday. There were many days I felt like I couldn’t breath. It was harder than anything I had ever experienced, ten fold.

My beautiful babies were given death sentences. My beautiful boys. I couldn’t then and still cannot imagine a world without them in it. I was in so much pain. For months I was a shell of a woman going through the motions of a life I could not recognize. At a point in life when breathing felt hard, my prayer life stopped. There were days I was on the verge of losing my faith.

Those of you that have followed this blog know that I did not lose my faith. And because we continued to live it, a little girl came along that brought me back from the void. My heart still hurt on a lot of the days between then and now, but I learned to fight, I learned I wanted to live a life well lived and I wanted to give my children the gift of lives well lived. To know the simple joys and also the greatest wonders. It is a work in progress. And even though it hurt, my heart was full of joy on a lot of the days between then and now as well.

And now, seven years later, we are here; half way through the year. We have suffered loss. Deep. Profound. Loss of life. Three times. In March, in May, and in June. I am shedding tears now as I struggle to find a way to explain and describe and it will have to wait. I’m not in a strong enough place to share the details so publicly, but I will, someday, when the time is right.

And as these losses continued to come, we learned my heart condition had worsened. We started a journey that would lead to a second diagnosis for our son. My husband’s heart broke with the lost of his dad and he is trying to find a new way to live without the man who loved and supported him all his life.

When Max, our oldest son was diagnosed, people were always asking us how we were doing. I remember my husband telling his Aunt that the hardest part of this was watching me hurt so much. I couldn’t believe that he loved me so much that my pain hurt him worse than his own. I don’t know that I ever fully understood until this spring. His heart is hurting so much and I can’t fix it. It hurts to watch him hurt. Almost as if he is drowning in a pool and he is always just out of my reach.

But this is what I know about the man I share my life with. He is strong. He has positioned himself in our family like the base of a mountain. When we need him he can pull us up from the valley below and be there to catch us when we fall from the top. He will tread this pool water like an Olympic swimmer and as the days and weeks pass he will find solid ground and be there at the base of mountain range bigger than any single mountain. Until then and always, I will reach for him.

Our marriage vows have become our survival guide over the past 16 years. These are the times we promised to love each other. These are the bad times and I know, because of the way we have chosen to live our life, that the good times are going to far outweigh the bad.

As I move forward with wet eyelids, I am praying for healing, peace, and abundant joy to be my companion as the calendar pages turn and the months bring me to a new year. A year when my eyes do not leak.

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