Thursday, March 5, 2009


I just had to post this. Our nightly routine consists of Capri picking something she wants to watch or books to read and her and I sit and do her treatments. For the past six years we have done this and Capri has always just accepted it with very few questions. For the past few months she has had to do the saline breathing treatments as well as her vest treatment. This is the treatment that is so painful to watch her go through but as always she has been a trooper. Last night she had picked out Cat and the Hat to watch and we had gotten her vest started and I was preparing her breathing treatment. She looked at me and started crying and she said mommy I do not want to do that one, she said I use to only do breathing treatments when I had pseudomonas or was sick. I said Capri you have to do this everyday just like your vest. She looked at me with the most devastated look and asked mommy do I have do that when I am 9 years old and I said yes Capri, and she asked do I still have to do that when I am 12 years old, and by now I started thinking and getting overwhelmed too at the thought that yes she would still be doing this gut wrenching treatment in six years, then I answered her with a little more hesitancy and I said yes Capri also when you are twelve, then she said MOMMY WHEN I AM TWENTY I STILL HAVE TO DO THAT, and I carefully said yes as not to break her spirit and overwhelm her, and she said mommy when I am 20 and all my friends are playing I am going to have to go and do this treatment? Here I sat explaining to my six year old that she can only take one day at a time. I said Capri just think of getting through doing it today and together we can get through it today and not worry about getting what tomorrow will bring, I promise you that I will be right by your side everyday doing it with you, you will never go through it alone. I told her this treatment will keep your lungs healthy, she said mommy just get me new lungs. Wow my little girl is growing up and realizing herself what a terminal illness is. I of course am not prepared to have to explain the word terminal to her but she is figuring it out on her own. I didn't quite know how to handle this. I told her that we needed to keep the lungs she already had as healthy as we can for as long as we can. Of course then comes the WHY and I said Capri you will more than likely someday get new lungs, but there is a chance that your body will not accept them. I HAD TO TELL MY LITTLE GIRL THAT HER DISEASE CAN TAKE HER LIFE and that is why we have to do these treatments. I felt like I needed to share this because I have been able to tell others her fate for years and there has not been one year that I have ever read Capri the letter I write to you all to raise money for a cure. I never wanted her to hear the words YOU MIGHT DIE, because I think that steals away the innocence of childhood and I don't want her to fear her disease I want her to fight it. I guess I am trying to share the burden of what happened last night because it is to much to deal with on my own. Capri is so very smart and I don't want her to ever feel different or scared but I want her to know that she must take care of herself to live. That the reason she goes through all this is so that she will be alive at the age of 20. My mom had a good point when I shared this story with her, she said Nicki when they find a cure for this disease then Capri won't have to do that treatment forever. That gave me a lot of hope to look at it that way. God tells us that we have to daily die to ourselves to live, I have gotten a taste of just what that consists of but it is hard for me to accept that my child, as a six year old, has to learn that lesson in another way. That she must daily go through the pain of her treatments to just have a glimmer of a chance to live. Please step in and help me promise my little girl that she does not have to do this painful treatment forever, if we can fund the research for VX-770 her treatment for this disease will only consist of two pills in the morning and two at night. PLEASE DONATE NOW!!!!!!!!!!!

1 comment:

  1. Your mom always knows just what to say. My name is Ellen. I used to work with your Mom in the NICU and she told me about your blog. I think you are a tremendous mother and so strong. I used to work at a CF clinic in Tulsa with Dr. Terrance L. Carey and have a strong attachment to CF. I mentioned to your mom that I would love to walk with you at Great Strides, if that is alright. I would also like to sponser a car wash once it gets warmer to help raise some money. I look forward to meeting you and your amazing daughter.