SMARD

It's been 3 years today.
3 years since we were told our baby was not going to live. We were ready for SMA, hoping she didn't have the more sever form. But this. SMARD. Paralyzed diaphragm. Trach and vent and watch her die at home. Or leave her intubated in a hospital bed until she is gone.
We were not ready for.

I'm amazed how much more information there is on SMARD since that time. There was no information. There was not much to go off of. We didn't know what to do. Sometimes I wonder if we would have made a different choice if I knew what I know now. Seeing some of the other amazing kids who are living with this. But then I have to stop. I can't think like that. We made that choice based on makenzie. She knew what she wanted.

I remember this day 3 years ago so clear. I remember her face. I remember her going with the nurses to get that X-ray done. I went with Jill to get some lunch. I hated leaving her. They had a special Christmas lunch that day. Free gingerbread cookies. They were good. There was music playing in the cafeteria. We got back to her room before she did. When we walked in I saw the jazz came by. Makenzies nurse said we just missed them. They left Kenzie a little basketball that was signed. (We later saw them wondering around)
Kenzie came back in and I decided to paint her toes. It was a sunny day. The sun was shining through her window. She was in a private room by this point. Jill was still there. We laughed and joked with our Kenzie. 2 of the doctors, both female, came in. They were serious. They asked if they could talk to me. I sat in the chair I always sat in to hold Kenzie. They sat infront of me. They started telling me about this test they did and what it showed. They were watching her diaphragm in an X-ray. They watched what it did while she was on the ventilator then they turned it off and watched what happened. It didn't move. They knew she had some sort or neuro-muscular disease based on other tests and the only neuro-muscular disease with a paralyzed diaphragm is SMARD. So they pretty much knew. We had to get blood work to make sure but they were all confident enough to call it that.
These sweet doctors who I talked to on a daily basis were sitting there with tears In their eyes telling me my baby girls life was not going to last much longer. I sat there. I knew what they said but didn't really get it. They left and I turned around to see my sister crying. I stood up and went to Makenzie. I put my head next to hers and just cried. I finally got up enough courage to call Ryan. Again he was at work. I hated telling him everything on the phone. When he answered I asked if he wanted me to tell him over the phone or if he wanted to come here and I'll tell him in person. He was anxious all day like me and just wanted to know. So I told him. I told my husband over the phone that we had 3 options for her life. That she was sick and not getting better. That her life was ending. That we could trach and vent her and bring her home to watch her die. We could leave her in the hospital how she was and wait for her to go. Or we could take her off life support and let her go in our time and in a comfortable way.
How do you respond to that? What do you say to your husband who is trying to hold it together at work but is breaking? What do you say to yourself to keep from jumping out a window?

How was this our life? How was this happening to our little girl? She was suppose to be ok. She was suppose to get better. We needed her. We needed to share our life with her. I didn't want to make this choice. How was I suppose to know what to do. What was best for her. I know I wanted to keep her. I wanted to never let go. I would have fought forever. But this choice was not about us. It was not to be made with our wants in mind. It was her life. It took us a while to make a choice.

That night was hard. We told our parents. We all cried.
No one could understand how we were suppose to make this decision.
I hurt so much that night.
I slept just feet away from her. Like every other night.
I kept a good eye on her through the night. But this night I felt so far away. She was slipping away. I felt like she was moving closer and closer to the end by the second and all I could imagine was ripping all those tubes out and running away. Running some place safe.

I miss her. I miss that beautiful little girl. I miss holding her. I miss the life we dreamed of sharing. I miss her smiles. I miss her noises. I miss it all. That life.
It's been 3 years.
And in 11 days it will be 3 years since she took her last breath.
It. Hurts.
It's a constant ache. A longing for her.
What is she doing? What is her life like? Is she happy? Is my sister taking good care of her? Has she grown or is she the same size? Does she watch us? Is she proud of the mum I am to her little brother? Does she really know how much I love her? I wish I could dream of her. Just a short one. Just let me go back to that life for a moment. It's been almost 3 years since I have had a dream of her. The last one I had was shortly after she passed.
I have patiently waited. I need one. I need to feel her. Feel close to her.

Please dream with me baby.
Mommy needs you more than you could understand.
Baby I love you to the moon and back.