I’m sure it’s obvious from previous posts (and since I’m a human being) that anger is something I feel on the regular. I never thought anything could happen to my child. Bet that sounds naive. It is. 

I always figured, once your baby is born and examined, you’re good. I knew raising children would include a lot of challenges, all at different stages. Seriously though, the thought never crossed my mind that something so ‘wrong’ with my daughter would be found so much later.  I felt like something wasn’t quite right early on. I’m angry at myself for not trusting my instincts earlier or pushing the doctors when I knew I was right. I remember telling the doctor, on multiple occasions, I was very concerned about Blake’s lack of progress, only to be told to ‘force tummy time and wait’.

I’m angry my daughter is being robbed of a long and healthy life. I’m angry she doesn’t get to do things that everyone should be able to do. I’m angry my husband won’t get to walk his youngest daughter down the aisle. I’m angry my daughters won’t grow up together. I’m angry we have to watch our baby get so weak she can’t breathe on her own. I’m angry I have to plan for things that no mother should ever have to plan for. There is absolutely nothing fair about this horrific curve life has thrown our way.

I have a lot to be angry about. At the same time, I have a lot to be grateful for. There are many families who have children that never make it out of the hospital. There are parents who never get to hold their babies without tubes and medical equipment. There are parents who never get to hold their babies alive. The thought of that takes my breath away.

We are lucky enough to have Blake at home. She’s babbling and playing with a balloon as I type this. She’s been with us every day of her almost 7 months. Jeff and I have been able to be with her most of each of those days. We have enough support and flexibility to put everything else on hold just to be with our girls. That’s absolutely amazing. Blake is happy and full of smiles every single day. She has shown us what true love really means. She reminds us, in an unbelievable way, absolutely nothing matters besides your family. I am incredibly grateful to be her Mama. I know Jeff feels the same way about being her Daddy. She has changed our world in too many ways to count. We are blessed to know her and call her ours. Everything is different because of her precious life.

I feel conflicted often. I’m so very angry, but I feel so very lucky at the same time. I guess that’s the nature of something as awful as this. I have to fight being angry every second of every day; I look around and I am grateful for all that I’ve got.

I just looked up from my computer. Jeff has a laundry basket on his head; he and Kenley are dancing to country music. Kenley saw me and said, “Mama, dance!”  I’m going to pick up Blake so we can all dance together. What could be better than that?