A Set Back

We received some news last night that Coltan would not be able to fly with us to Florida for Noah's Wish Trip. The trip is booked for March 10-17, all of us are ready to go, grandparents, and uncle. But I had this feeling in me to call Coltan's surgeon and ask about his safety on an airplane, particularily the pressure. Sure enough, the pediatric nurse that works with the surgeon called me back and said that it would not be safe for Coltan to fly. The pressure in the plane could cause the lesion in Coltan's lung to burst and fill his lung with air. It could be fatal.

My heart sank when she said this to me. We are all ready to go. Flights are booked. And now this. I just couldn't believe it. Yet I knew there would be a possibility because I had that feeling to call and check it out. I started to cry on the phone with the nurse. I just couldn't help it. She started to cry too when she found out that we had this trip planned because of Noah and his battle with leukemia, and that our whole family was going too.

She was very nice and explained things well to me. She said that I should come in Monday and speak with the surgeon and maybe we could retest Coltan and see where his lung is at. But if there is any risk at all, we will not take it. Now it's a matter of figuring out what to do, if we want to postpone the trip until after Coltan's surgery, or have my parents drive with him. Or leave him here with my parents,or leave him here with someone else, and we wouldn't know who to leave him with at this point.

Perhaps what is the most hard to accept is the big reminder that this is. Coltan is sick too. And we knew that since I was pregnant, but he doesn't look sick or act sick. And with Noah's cancer, that is where our focus has been. This is a huge reminder that Coltan will need major surgery to remove part of his lung. And it hit me really hard. My boys are sick. And there is nothing that I can do about it. Nothing I can do will take this away. It's so very hard.

I like to think that I am a normal mom. But I'm not. I'm a peds mom. (pediatric mom). I think differently that other moms do because I HAVE to. A simple plane ride isn't simple. A plain old cold, isn't just a cold. A kid in school with chicken pox, poses a huge threat to the safety of my child. This is our life, our reality. Sadly I am not alone. There are so many of us, and sometimes it really get's to me. Seeing those parents with their sick children. Seeing my friend, lose her little boy. Seeing my boy fight a battle that no kid should have to fight. It's overwhelming some days. And I only get through it because there is no alternative. I have to. And even though when I hung up the phone with the nurse and threw my hands up in the air saying 'what now'? God. What now? I know that He knows. But sometimes it feels extraordinarily hard to have faith. Faith that things will be ok, because they so often aren't ok.

So please pray for some clarity for us and our families, as we need to figure out what to do next. My prayer remains the same, that Coltan will be healed and Noah too. That Holly will not be scarred from being neglected during these years of focusing on her brothers. That my anxiety (which has been increasingly bad since November) goes away. Thank you all so much for remembering our family. We do feel your prayer, and I believe it get's us through every day. Please think of all the other families that are fighting for their kids. The list is long and it grows everyday. And even though you don't know them by name, God does.

Melissa