As I sit here in the comfort of my living room, on a lazy Saturday afternoon, I get to watch my kids play in the rain. I get to see them move on their own, with smiles on their faces, and toys in their hands. I get to help them with the "problems" in their day...an untied shoe, a dropped sucker, a scraped knee. I now know the importance of being able to "fix" such things for your children. And, I know that a day will come again when I will take the simple act of brushing my daughter's hair for granted. But, right now, in this moment I have not forgotten that there is another world of parenting out there. A place where parents don't have the answers and kisses don't fix boo boos.
Living in a hospital full of sick children is sort of like living in a parallel universe. You know in your head that somewhere out there parents aren't spending their days watching heart monitors and respiratory rates. You know that the biggest obstacles for the day are running to and from grocery stores and ballgames. But, it becomes extremely hard to remember that when you run into parent after parent with strain in their faces, slumped shoulders, and dark circles under their eyes. Everytime you think that your day couldn't get any worse you get into the elevator with a mother who has been there longer, a father whose daughter used to be an athlete and now lays motionless in a shell of her former self. It's heartbreaking and emotionally draining. It physically pulls you closer to the ground. You can actually feel the pain in the middle of your chest, and you ask again, "Why?"
I met two families in my stay at the children's hospital, and we shared several of those "been there" moments. The difference is that I sit here at home while my baby progresses, and neither of them got to bring their children home. Mothers here in my hometown discuss which teachers their children will have next year, but in that other world, my new friend/familiar stranger tells me how she plans to hold her baby as he leaves the world. And people called ME strong? You don't get that kind of strength by choice. You get it because there is no other alternative.
I'm not strong, and at times I even felt like a coward. When my baby was struggling the most, and things were the most scary I stood at the foot of the bed and stared. The doctor asked if I wanted to stand up next to him and hold his hand, and I remember thinking, "I should WANT to shouldn't I? I should want to be there for him and touch him during this scary time." But there comes a point where you are sure that you absolutely cannot take another second. It is difficult for me to share these things because I'm ashamed of those moments. Did I walk up next to him and take his hand? Of course I did, but it wasn't because of strength. It was because the alternative wasn't an option. These are the moments that I remembered all of those people who were praying for us. I recalled the encouraging words of our friends and family members, and I let THEM hold ME up.
For whatever reason, our current outcome is a good one. It's difficult, but ultimately positive. I do not take that for granted. I know how lucky I am to be able to even share these thoughts with others. We will continue to take steps forward. We will continue to be fearful of falling back, but will celebrate the little victories along the way. But, no matter how far forward we go, I will not forget the place from which we have come. I will not forget the families who mourn losses, or the ones who continue to fight that impossible battle. I promise today and everyday, that Kailey and baby Noah will not be forgotten.