I am full of sadness today. It hit me like a sniper.
My plan was to drop kids off at school, work out, go to a meeting and then to order a cake for Max’s birthday tomorrow.
Last night though, Chance had asthma attacks all night and I was up with him for quite awhile at 2:30 helping him catch his breath.
I woke up tired. He stayed home from school. Plans are never made to last anyways, right?
I set out to accomplish what I could. My meeting was so hard. I met with a man from the parks and recreation department to pick out a spot for my sister’s memorial bench. My other sisters and I had discussed whereabout we wanted it and I never expected to get emotional.
I was okay in the beginning; but as I started to explain why my sister Dani loved this park…that we had lived near it as children, that she spent a lot of time hunting for crawdads in the creek that runs through it, I could feel my eyes begin to water and my voice began to crack just as I finished speaking.
I went home and cried and cried. Ugly, snot every where, bawling. It hurts so bad to know she’s not here anymore. I try to stay busy, but every day I feel a heaviness creep into my chest and a loss of breath as I remember she is gone. The tears really catch me off guard. It hurts to even think about her right now because it hurts so much to miss her.
I gathered myself and had lunch with Jason, Chance, and Mary. I took it easy until it was time to pick up kids early from school. I went with Max and let him pick out his own cake. We laughed as he told me he talked Sister into letting him bring Birthday snacks to school tomorrow and subsequently picked out cupcakes.
I laid down for a couple hours this afternoon. I needed to rest. I got up to get supper started. As I began to prepare the food, I thought about Max. He’ll be 12 tomorrow. He loves his birthday. Every year, it is his favorite day. He waits and waits for it. He’s been planning phases of celebration for over a month!
I could not help from letting my mind wonder…
Is 12 years half of his life? Is my time with him half way over. 12. He is doing so well. I thought he might be in a full-time power chair by this birthday. He’s not close to that. We are doing things that have never been done before in Duchenne and he is benefitting. So much could change very soon if the FDA denies the appeal for Ataluren. Will he still be doing well in 6 months, if he has to stop taking it?
There are days I dare to dream he might still be walking in college or across the stage for his high school diploma. But inevitably, there are days like today that I could not help but worry none of those things will happen, that he might not even be here.
A dark truth, especially with the death of my father-in-law and sister happening so recently, I think about burial plots for my children.
It’s awful. Here I am the night before his birthday and I just wrote that. I could throw up for just thinking it. But. I. Think. It. Sometimes.
Mary’s voice interrupted my thoughts. She needed help. I walked out of the kitchen and passed Max drawing at the table, caught the dogs sitting together at the front door waiting for Jason and Lexi to come home and found Mary and the other boys playing cars on the floor.
It was perfect. My family is perfect for me. They bring me light in my darkest hour. They bring me joy when I forget it exists. My heart warmed and then melted actually. I tried to take a picture but didn’t get exactly the moment I described.
I am so thankful for them and the lesson I continue to learn over and over again. Their love, our love, our relationship with God, our joyful nature…that is what is important. No matter the length of years together on this earth. What matters is that those years are spent well. That we live well. That we experience the fullness of love.
In a couple of hours, I’ll wrap birthday presents from his Tayta and decorate the house for the birthday boy. We’ll leave decorations up until next weekend when he celebrates with his friends. Saturday morning we will head to Lincoln so that he can ‘shop’ for the present he wants from us and spend the night at his favorite hotel with his Aunt, Uncle, and cousins.
We are going to celebrate life well lived and by celebrating life we will live well. We will celebrate love and faith and joy. We will remember the measures of love, faith and joy that are now heavenly in nature and remain with us.
I hope in the end, when we know the full experience of our life on earth and all of the truths we don’t know yet, long after we are gone, I hope our legacy is one of living life and of love.