No escape

I woke up on a Wednesday morning inspired to write a blog about joy. I wore a ‘joy’ shirt and took a selfie for the blog.

Then came the phone call. I never wrote the blog. I had no idea life and people could change so quickly. 48 hours later I took a second selfie because I never wanted to forget.

How naive of me to think that I ever could. I’m having a hard day. I don’t remember the last thing I said to her and so mad at myself for never answering the last text she sent me.

She’s been on my mind and my heart all day. Last Saturday I swore I saw her walk into a basketball game. The same blonde hair, a big hoodie, I had to look twice. My mind is playing tricks on me.

Today in a waiting room there was a young girl. Something about her reminded me of Dani. She was there with her baby. She was doting on him, grinning, so obviously in love with her child. I hope that somewhere in heaven Dani is holding a baby and just as in love and happy.

A broken heart seems an under statement. There is a hole in my chest. My throat hurts, it aches when I cry. I have to take deep breaths.

She was born on Thanksgiving. Although this Thursday is not her birthday, it does not escape me. I had looked forward to the holidays. I thought it was going to be different for me, that the holidays would be ok. I was wrong.

If she were here, she would have stayed in Oregon for Thanksgiving and I wouldn’t have seen her, just a text to say hi. But for some reason the thought of celebrating when the world is short my baby sister, seems impossible.

You know that grief is going to be hard. It’s like when someone tells you that time with your kids goes too fast. You believe them, but you have no idea until you have your own kids. I knew grief was going to be hard, but until I lost Dani I had no idea how hard it was. There is no escaping this. It has to happen. I just wish it happened faster.


When they say, “take care of yourself,” or “get enough rest,” it is a real thing. Life has just been a roller coaster lately. I’m trying to take care of myself and rest, I’ve been getting regular workouts in, drinking lots of water, eating mostly healthy, and trying to sleep.

Sleep seems to escape me. Even when I fall asleep, I wake up in the wee hours of the morning and my mind just goes…and goes and goes. I think about everything from my sister to packing lunches, loads of laundry, clinical trials, the 10 lbs I could stand to lose, the cat, the dogs, Christmas, basketball, stress fractures, a new van, and it just goes. I try to turn it off, I pray for sleep to come to me and eventually it does. However, I know I’m not getting enough rest.

It is a real thing when people tell you to get enough rest. Because when you don’t, your body doesn’t function normally. I am sick for the 3rd time in 2 months. I never get sick like this, ever.

I’m feeling better today than I did last night when I ran straight into a brick wall (figuratively). But to be honest the color of things coming from my nose tells me I’m fighting an infection. Against my nature, I decided I better stay home and take it easy today before I get worse.

I’ve been practicing #30daysofThanksgiving this November. Each day, I post on social media something I am thankful for. My husband, my children, my friends, family, sisters, daughters, nice days, good books, anything and everything that brings me joy. I’ve posted mine already for today. But I continue to think of more and more.

Rather than post multiple time and annoy everyone in my newsfeed and because Mary is totally vegging out watching Paw Patrol I thought I’d get to work on another blog.

I woke up in a soft bed, with warm covers, and a toddler’s leg hanging over my waistline. I took a deep breath in and although I could have stayed there for another couple of hours, I followed my husband out to start the day. I smiled at a couple of sleepy looking kids and asked about their ‘sleeps’ on my way to a hot pot of coffee waiting to be poured and mixed and my pumpkin spice creamer.

That’s it, those first 3 minutes are full of a lifetime of blessings.

My bed. This means more than you can imagine. There were seasons of my life that the same bed every night, in my very own room was not a thing. There were nights in shelters where after a couple of days I could sort of breath and adjust to a new normal and a new bed and new blankets, none of which were mine, to find out that a foster home had opened up and we were moving to a new house, in a new room with a new bed and new blankets, none of which were mine.

Time would pass and I’d adjust to the new family and new bed and then it’d be time to adjust again. Then in college, there were months that if I didn’t spend the night with Jason, I’m not sure where I would have slept. So to wake up each morning in my own bed, it is a blessing. Not only did I wake up, it was in my own bed. I am blessed from the very the start of my day.

The toddler’ leg. That leg belongs to the child that completed our family. She is strong willed, and competitive and caring, and hilarious, and spoiled and brings large amounts of joy each day.

The husband. My best friend. The man I love more today than I could ever have imagined on our wedding day. My partner in everything hard and sad and beautiful and amazing.

The kids. I spent my entire life looking for what it was I was supposed to be. I have a master’s degree, two bachelor’s degrees, a resume full of a variety of jobs, experience as an educator and a consultant. All of that, it was always just work. It took me awhile to figure it out, but the kids, they were always what I was supposed to be. I was meant to be their mom and that vocation of motherhood it gives me all the purpose and more than I could have ever imagined.

The sleeps. It means I have sisters. After years of living a bit separated, we have pulled together. One of my sisters and her children call it sleeps. It stuck with me and I now love to ask my kids the same question every morning that I know my sister is asking my nieces and nephews. I have family. It means that even if I wanted to be left alone and forgotten, it would never be possible. I have people. The ones in my house and the ones thousands of miles away and we are connected.

The coffee. It means we have electricity. It means that I have a kitchen with cupboards full of more than just necessities. The coffee will sooth my sore throat, warm me on a cold day, and reminds me every morning of the loving man I’m married too.

As I write all of this, I don’t forget that life is not the way I would have planned. If I was consulting on this plan, I’d put a little less broken heart, a little less uncertainty, a little less loss, and a lot more cure for DMD.

But if I were writing this plan, would I have included even half of what I’m thankful for. Probably not, I’m too human and too selfish and would not have thought of the blessing each of the lessons and people are.

Maybe I will annoy my newsfeed. But I love November. It gave me a sister, it gave me a son, if gave me the Chicken Noodle Dinner & Bazaar, it gave me Thanksgiving, and right now in the middle of my grief and this new bout of crud, thanksgiving is my lifeline.

When I count my blessings they are greater than my sorrows. Does a hot cup of coffee make up for the loss of a sister, or the fear of losing a medicine that is helping my sons? No. But, the lifetime of blessings that I can reflect on and count, it soothes my aching heart and even in the midst of my grief, my heart is a grateful one.

Always the Same Answer: Love

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.