My little angel, it’s not goodbye.

Life is a journey. Sometimes the journey is full of laughter and smiles. Sometimes it is filled with tears and sorrow. You can either fight the route your on or you can let go (or try to) and go along for the ride and allow things to happen.

My beautiful wonderful grandson passed away on December 18th. While we knew he could leave us way to early , I wasn’t ready for it to be this soon.


I was there to see him come into this world with is little grumpy man face. I remember thinking this kid has done this before and is thinking, “oh really again?” But maybe he was just looking at us and thinking are you really read for this? He always seemed so much wiser than just a little guy fresh in the world.

You would be on your phone or ipad and he would look at you like “Um hello, I am hear. Put that down”. When he could make noises he would let you know he was there. Yet , at the same time he loved the camera and knew when you were filiming or taking a picture. It was hysterical.

I loved my special days with him early on. My daughter , being as single mother , had to return to work and I watched him on my day off from work. We sang, took walks and took naps. It was wonderful to be with him and read books to him. My five children never seemed to love to be read to the way Colton did.



When my daughter felt there was something wrong with Colton I admit to brushing it off. He seemed so healthy. Yes a little behind on some things but everyone grows in their own time I thought. She knew before anyone else he had SMA (spinal muscular atrophy). The month they were in the hospital felt like a life sentence for me. I wanted them home. I wanted him healthy. I wanted it all to go away so my daughter could have what she had been dreaming of. I wanted the future that I painted in my mind when we saw him the first time in an ultrasound.

My heart broke over and over again from those hot days in August. Then there was the hope of the trail drug. The videos of other babies doing so well on this medication. The rush to get him in there. Then the agony of watching him get sick and missing doses. Everyday looking at his movment. Was he getting worse or was it getting better. See it was a blind trial as this treatment is showing promise and is going to the FDA after this study. So Colton was getting either the trial drug or a placebo. My daughter hoping he was getting it would be filled with doubts now and then. But she had to do something, anything to help him. There’s no cure. No treatment.

Colton got sick again. We were just grateful he got a dose of the trial drug. He didn’t have another appt till nearly Spring so she could do her best to keep him healthy over the winter. Snuggle down with him. I really though he was going to do it. I thought about this first birthday. I thought about what if he is the little guy to beat the odds and they find a cure. I started to dream of a future and build my grandma dreams around it.

He was doing great at the hospital and they sent him home. It would be short. Two days. I missed those two days because of work. I missed getting a christmas tree with Colton. I missed just smelling him and hearing him. He was rushed back to the hospital via an ambulance. My daughter telling me she wasn’t sure he would make it this time when I went up to visit. He seemed different. I hated to admit he did seem different but he was sick. All children seem different when sick. I had the urge to stay that week everytime I went up to visit them. I wanted to leave work early to go be with them.

The night before he passed he woke up and smiled. He was giggly and silly and as my daughter always called him “saucy”. He flirted with his nurses. He was our little Colton. Out came the iPad to catch him being cute. We got him to try to blow raspberries and to stick his tongue out. I felt my body exhale and relax. He was going to be ok. I saw the hope in my daughter’s eyes. It was wonderful to see it. For she had asked me on what day did my father in law pass away. That day was coming tomorrow I thought. She would be wrong , he wouldn’t die. He was going to once again show us what a fighter he was.

I didn’t want to leave that night. I wanted to stay the night like I did when he first went in the hospital back in August. I just felt like I wanted that extra time with not only him but with my daughter. I just wanted to be there with them.


The next morning I got the call. One that I will never forget. The doctor said he had a hard night and things were not good. He would not make it through the day. I hung up the phone and screamed. I screamed with every ounce of my being. It was primal, it was loud and my body shook. I screamed till I couldn’t scream anymore and I started crying. I made the calls I needed and rushed to the hospital to be at my daughter’s side. To say goodbye to the boy who always smiled, who always laughed. Who just was pure love.

Colton died in his mother’s arms. He was surrounded by love. He looked up at his mother before he passed away and smiled. Even in death he could smile. He smiled through everything he went through. He radiated love always. My world seems a little darker and colder without him here.

I lost my grandson and a piece of me too. Yet , somehow I gained something. Colton’s courage through all he went through is here. It’s pushing me through the day. He could go through so much in his short 10 months. I can push through today.

I dreamed of him last night and woke this morning thinking that really it’s not goodbye, it’s see you later my dearest little monkey. I am going to try so hard to see it that way.

Colton I love you. Thank you for coming into my life. Changing my world. Making me see things differently. Making me want to take changes and risks. Thank you for your smiles. Your love. Your sweet giggles and noises. Thank you for being my daughter’s son. For changing her world. I love you so deeply and I hope you felt it. I hope you know it now and I hope you knew it then. Grammy will always love you.


One response

  1. Thank you Shelly for sharing such a traumatic time in your life. You are a rock. Colton needs you to be a rock for your daughter. You are an amazing person and mom and grand mom. Stay strong.

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