So I’m up at the Y, riding a stationary bike and I realize it is the only time I have to write this.

I wanted this to be profound and my best writing yet, but I can’t find words of my own.

This year I learned than Duchenne is not the worst thing that can happen. Duchenne has actually brought me mercy and grace this year. The many times I wanted to fall apart because we kept losing ones we loved, Duchenne saved me.

I could not fall to pieces. I had to keep my stuff together for my boys. I couldn’t just lose it. I had to keep track of their care, their appointments and keep on advocating for better care and treatments. The job that Duchenne can be, kept me going.

It was not some inner strength. I am an independent person. It would have been my norm to just keep on plugging away on my own. I would failed miserably.

I had nothing left to give of myself. So I gave it all to God. And through the ups and many downs of this year. It was the words in my rosary companion that kept sounding off in my head. That kept me going on the right path.

Please know that it does not mean I prayed the rosary repeatedly, I should have, I should have leaned more heavily on prayer. But I was too tired. I had nothing left to give and so I gave it all up.

These are the words that kept me going. And they are the words that I will take with me into the near year.

• Start from presence, not impossibility or nothingness or darkness.
• His presence is basis for true joy.
• There is no human circumstance that warrants despair because there is no human circumstance where He is not present and so there is never reason to abandon hope and joy.
• Joy comes from being loved.
• We experience great sadness in life simply because we forget things, like love.
• Anticipation is half the pain and sorrow.
• Anticipation is half of the joy.

I know that I am loved. I know that He is always with me. I don’t ever want to forget love, namely His love. I will never quit hoping, even during the hardest of days. I will always search for joy.

Happy New Year! Prayers for peace, healing, and joy for all of us.

Last spring we stopped at a Marshall’s. I don’t remember what we were looking for, but there was a clearance rack of dresses. I knew I had an important meeting coming up and looked for a dress to wear. I found a black dress with a floral design. It was shorter and more stylish than the dresses I prefer to wear, but it was very pretty and I felt brave. I purchased it. I hung it in the closet and really didn’t know if I would ever wear it, but was happy to know it was mine.

Since spring I’ve attended 4 funerals. In May, my father-in-law died. And although we could see it coming, that 5 AM phone call from my husband telling me he had passed instantly stung my eyes with tears and seized my stomach with fear and anxiety as I knew I would have to tell his grandchildren.

Steve deserves his very own chapter in this blog of mine, and I’m not ready to write it. The one thing I want to say though, is that he was a father figure in my life longer than anyone else that might have called me daughter. It was a loss that left it’s very own void in my heart. Then to watch my husband mourn his father was another heart wound all its own. Even now, there are things we should be calling him for and there is no phone number to reach him at.

I wore that black flowered dress to his funeral. What I remember most about that dress is how it felt against me as my husband tightly wrapped one arm around my waist during the funeral. It was almost as if he was holding on to me so he wouldn’t fall over. I was strong for him that day. I felt brave when I bought it and I felt strong when I wore it. He may never remember holding me that way, but I will never forget it. The grip, how tightly it wrapped the dress around me. It was strong and compelling and comfortable. It’s the way Steve would want us all to feel.

Ten days later my husband’s aunt passed suddenly. She was my mother-in-law’s twin. She was kind and gentle. I can remember a time she sang a lullaby to one of the boys. I remember her sitting on my deck and I love the crystal wine glasses she sent us as a joke.

I wore a different dress that day. It was an old dress. I bought it when I was in my 20’s. It was not a typical dress for a 20 something, but I wanted something traditional. It is a knee length black dress. There is a sparkled broach that pulls it together in the front. It has stood the test of time. Traditional. Classic. Timeless. Beautiful. Things that can be described with those adjectives, they don’t go out of style. They are always. I’d like to think the same of our Aunt Linda.

Then fall came. My sister. My little sister. She had a heart attack and never recovered. This one hurt the very most. She was so young. She had never married and had no children. It still seems not enough. Not enough time. It happened fast and traumatic. And parts of it were slow and excruciating. My time with her was not enough. I am trying to find a way to live with how much time I didn’t spend with her. I miss her, not only her, but I miss the time I didn’t have. Time I didn’t have when I could have and the time I can never have now.

I wore the black, floral dress to her funeral. Dani was beautiful. She could have been a model. I wanted to be beautiful for her and that stylish dress with a pair of heels made me feel beautiful for her.

And then just today. Only a couple of hours ago. A friend’s mother. A friend’s grandmother. I had only met her in passing, but I cared for her in the way you care for the ones that are important to the ones that you care for.

The morning that she passed, my friend text me that her mom was gone. I could read my friend’s pain in the lines of the text. A pain I could recognize from the loss I have endured these past 6 months.

The lines of that same message created tears of gratitude and humility. Her mother had suffered a great deal during a 4 year battle with cancer. She never complained. Instead, she offered up all of it. She offered all of her pain and all of her suffering so that 3 little boys and their family might suffer less. She offered all of it up for Max, Rowen, and Charlie.

I wore a longer black dress. It is cold today, so I wore boots and a black sweater. I wanted to be warm.

DeDe had not spent much time with any member of our family. We did not have an opportunity to know her well, but she loved someone who loved us. It is humbling to be given a gift so big. There are some things that mean so much to you, you know it can never be repaid. I can only hope that someday I can be that to someone else. Her gift was one of warmth, during a very difficult year.

I learned so much about love from loss this year. It taught me that loving someone who is fragile and vulnerable is a soft and delicate love. It is a love with an ability to pull people together and deepen already existing love.

It taught me that having someone to love you and care for you when you are vulnerable and fragile is gift.

Loss taught me that death doesn’t wait for you to reach out and forgive. It doesn’t wait for you to better a relationship. Loss happens on God’s time. Loss taught me that you can’t take advantage of anything, don’t wait for a perfect time or a perfect place. It taught me to hug more, laugh more, cry more, say what you mean, love hard, give freely, forgive always, be kind to yourself, love more and then love some more.

I’m going to find a dress that says all of that. That will be my funeral dress.