Nobody Said Life Was Fair

Most of the time I have accepted that we are on this Special Needs Journey and I’m able to manage to navigate the path with strength and grace because I love Levi and that’s what moms do for their children. I love him more than he will ever know and I want him to have the best life possible. I would want this for him even if he wasn’t special needs. Through this journey I’ve been forced to be stronger than I ever wanted to be. Sometimes, I get really tired of being strong and accepting of our new life. Today is one of those days. 

I’m mad. I’m mad that I already buried a baby and in a sense I’ve lost this one too. Although I haven’t had to bury him, we still grieve the loss of a "normal" baby.  I prayed for this baby and was truly grateful for the answered prayer. I still am grateful. I’m mad that I had six months with him thinking he was normal. I was so happy for those six months. My prayer was answered and I had the family I had always dreamed of. I’m mad that this happened to him. I’m mad that I don’t know what “this” is.  I’m mad that his life is hard. I’m mad that every time I think we are making progress, we get punched in the gut with new hardships that Levi has to deal with. I’m mad that our life is full of appointments and therapies. I’m mad that Isaac doesn’t get the brother that he envisioned.  I’m mad that Isaac’s life is limited because of Levi. I’m mad that this happened to my family.

I wouldn’t wish this on anyone else, but I’d be lying if I said I never asked “why us and not someone else?” I’m am human being. I’d be lying if I said it doesn’t hurt to see your normal kids meeting their milestones when I don’t know if my baby will ever say my name or hug my neck. It doesn't mean I'm not happy for you, it just means I desperately wish that was Levi. I’d be lying if I didn’t worry about who will take care of him when I’m gone, or who will take care of him if I can’t.

People say to me all the time "I don't know how you do it." Here's the truth...I do it because I have no choice. I do it because God helps me. I do it because I love Levi. I do it because I have an amazing teammate. I do it with the love and support of our family, friends, and church family. There are days I don't want to "do it." There are days when I'm not strong and I want to give up. The reality is, we struggle. Facebook and social media can be misleading sometimes. A majority of the time people only post the positive things going on in their lives leading others to think (incorrectly) that their life is without struggle or hardship. That's such a lie. Everyone has something. Nobody has a perfect life. I don't want to lie. Our life is hard. Levi's life is hard. Despite that, we still have lots of really good days. We still have faith. We still have hope. Today I'm mad. Tomorrow is a fresh start and I will just keep swimming. Levi needs me to be the strongest swimmer I can be.