After you’ve been told your baby has a fatal illness, nothing in the world makes sense. Everything is wrong, so very wrong. I think back on the first couple of days after we found out, which wasn’t that long ago, and I don’t remember a lot. Obviously, a ton of crying happened… a ton. I cried so much, all my tears just stopped coming out. My mom and sister kept bringing me water to prevent dehydration and because I still needed to feed Blake. I remember telling my mom I was in physical pain. I hurt all over. It was surreal. It was horrible. Jeff kept telling me he felt like we were on the outside looking in, like we were watching an awful movie.
Sometimes it still feels that way.
It was either the day we found out or the day after. Jeff and I were alone with Blake in our bedroom. She was asleep. I held her close, letting go of everything I was trying to hold back. I felt so broken and helpless. I can’t explain what it feels like to know there is absolutely nothing you can do to save your child’s life. Mamas are supposed to protect their babies, no matter what. I kept telling her I was so sorry that this was happening to her. I felt like that was all I could do. I was repeating over and over, “I’m so sorry baby. I’m so sorry I can’t make it better.” After telling her too many times to count, she opened her little eyes.
One of my favorite looks Blake has is right as she wakes up. She looked at me and smiled her perfect smile. My tears continued to fall, but along with the pain, right beside it, I felt something else. I realized, in that moment, she was okay. I will always be her Mama; I still have today, tomorrow and hopefully the next to be her Mama here on Earth. I can love her, play with her and enjoy every second I get with her. Even in the midst of all the heartache that’s what I try to do.
One of my very good friends has someone in her immediate family with terminal cancer. Before Blake had a diagnosis, she knew how much I was struggling with the unknown; anxiety, fear over what might be. One day, she said to me “I know it’s so hard but you have to try to live for today and today only.” I thought she was insane because obviously that’s just impossible to do, even though I saw her doing it.
After everything we’ve been through, she was right then. She’s right now. I’ve learned it is the only thing we can do. Jeff and I try so hard every day to pull ourselves out of the darkness that can swallow us up. It’s extremely difficult, but Blake needs that from us and so does Kenley. We’ve been trying to enjoy our life as a family of four. Blakey is still healthy enough to go most places, just for shorter periods of time. We’ve been to the beach a couple times; recently, we went to the zoo. We even run to Target or the grocery store on a rare occasion.
There are days when I can’t see past the darkness. It is with me all day long and there is nothing I can do about it. On those days I rely on my mom, my sister or Jeff to help me more. Those are days when I hold both my babies as much as I can and just do my best.