Tommy's Ordeal and Breaking Down Walls Pt. 3

I think the doctors and nurses saw that I was falling into a deep depression (I suppose the not being able to stop crying gave it away) because they kept introducing me to other parents whose kids had CF that were on the floor. Kids that have CF shouldn't be around other kids with CF because they are contagious to each other. Another unfairness of this disease. They can't even be around people that they can identify with (except for their brother who they don't always like to be around). The people were very nice but it felt like I was looking into a crystal ball of what my future would be like and it was very overwhelming and very scary. After hearing, "Oh, you think this is bad, wait until he needs a feeding tube and it gets infected," or "This is nothing. Little Susie gets a blockage every once in awhile. Now that is painful." The one that put me over the edge was, "While she is here, they are testing her for Diabetes. It's common for kids with CF to have it so no big deal. You'll be doing it at some point, too." I decided that talking to other parents was not a good idea. At least not for me. I said a prayer that night (the second one since we found out that Tommy had it. The first was the night he went into the ICU) asking God to spare the boys what the other kids were going through and to please give me the strength to be the mom that they needed. I made a vow that night that I would not let CF be the focus of our life. I was going to parent them the way I had intended to so that when they are 60 (living life fully since we will have for sure found a cure by then), they can look back and say, "My parents never treated us differently because of it. We had a normal childhood like everyone else we knew." I know normal is relative but I wanted CF to just be something that they battle when things come up. We'd take care of it and we'd move on. I vowed it wouldn't define them. I would teach them to fight and rail against it and keep doing what they love to do. I decided that I would take on the burden of the "what ifs" and the fears if it meant they wouldn't have to. Fast forward to today and this is still the way we handle things. I let them cry and talk about how much it sucks because it does and then I try and plant the seeds of faith and how God made them the way they are because they are strong enough to fight until a cure is found. That they might have CF and it is hard but God will never leave them and will give us all the strength to help them through it. (When I am desperate, telling them they will defy the odds and be a professional athlete with it usually helps too.) For now, that seems to help them in those moments.


As Tommy started feeling better, his little personality started to shine through and he charmed everyone, including me. I fell completley in love with him. He let me hug and cuddle and kiss him and no matter what they were putting him through or doing to him, he smiled. He was easy to make laugh and that was what I spent my days doing. He turned 4 months old while we were there, got rotovirus and never had a full night sleep without someone poking and prodding him but in the end, he got better and became the fighter that he is today. To look back at the time before he went in and remember that I had a hard time bonding with him hurts me because when he wants to be, he is a little ray of sunshine with an old, old soul that I love dearly. I pray all the time for me to outlive the boys (the girls too) because I don't want to live in a world where they aren't here. CF or no CF, I don't think that makes me much different than any other mom or anyone that loves someone with all of their heart.