:CAUTION: You may have already read this in my fb notes**
My son Jack is 17 months old. He has a caring and charismatic personality that seems to draw everyone to him whenever we are out in public. What most people do not readily know upon first meeting him is that he has Cystic Fibrosis. He looks like a very normal, very healthy 16 month old on the outside so it comes as a shock to most people when they find out that Cystic Fibrosis is the number one killer of genetic diseases.
We first found out that our baby had CF when I was pregnant with him. Although abortion was an option that we considered we finally realized that our baby boy deserved to live his life to the fullest, who were we to to take that away from him? Looking back today I know that it was the best decision we ever made. We knew the challenges and obstacles that were in front of us, but we knew that our son was worth anything. I never could have fully prepared myself for what we were to face but adaptation has become my middle name.
The first time it really hit me that my baby was not just a normal healthy baby was soon after he was born. He needs to take enzymes before he eats. The enzymes come in the form of hundreds of tiny beads inside of a capsule. They had to be sprinkled onto his tongue with the understanding that we had to make sure we didn't let any beads linger in his mouth after he was finished eating. Any beads left undigested could cause ulcerations in his mouth. You can imagine its hard enough to have to dump beads into a hungry screaming unsuspecting newborns mouth, but for me, a new mom it took everything I had to not just break down and scream right along with him. This became a regular routine of shoving enzymes down his throat and then sticking boob or bottle in his mouth (the latter after ulcerations were not welcomed by my nipples) and then swabbing his tiny mouth for any misguided beads.
This was all well and good and easy enough. Then came the percussions. I had little compression cups to literally beat any mucous out of his lungs. Yes, there was crying on both of our parts. Having to repeatedly beat a newborn in the chest in different spots all over the lungs for 2 minute intervals was hard to swallow. This lasted 30 minutes twice a day. This was quite possibly the hardest time of my life and as he has gotten older and we have come into a routine it has gotten progressively easier for both of us. He now wears a vest that shakes the mucus out of him and he can swallow 3 capsules at once in a little bit of apple sauce. He is my rock, my hero, my awesome little man. Most people that see him don't know what he has been through in his short little life, but I do. I am amazed by how truly awesome this little toddler of mine is.
I am so excited for the new drugs that have come out in hopes of treating the underlying defect on the cellular level of Cystic Fibrosis. We still have a long road of trials and FDA approval to go through, but I'm not going to lie, I have already given my hopes up. I am sold! I think we have the winning drug combo in the VX drugs and its hard for me to think otherwise. I don't want to think of the possibility of these drugs not working. I look at other CF moms and I couldn't imagine having to go through as much as they have gone through in their years of being CF moms. They are awesome women and I am so privileged to have personally met some of them. I have so deeply invested my self into the possibility of these drugs working and I am afraid what the future will hold for my son and other CFer's out there if this doesn't work. The hard fact is that finding a cure takes trial and error. Trials cost money and so do errors. The Cystic Fibrosis Foundation needs money to make errors and hopefully sooner than later find out in the next 18 months or so of patient treatments of the new drugs they will find that they do in fact have the key that will give hope to my son and every other sufferer out there. We need a CURE! If you would like to donate any amount is sooo very much appreciated and I will repay you with love, and Jack will blow you kisses!
** I know now I'm just cheating using old posts but don't worry every other post will be completely new material... I promise!! :D
I feel ya girl. This is the same way we found out. and thought and felt the same as you. We are so lucky to have our amazing children. It was so overwhelming at first but we are now professional CF mamas! ;) But it doesn't mean it's not hard and still, at times, overwhelming. <3
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