I honestly do not know how to begin or what to really say about how I got my son Khaleb to be so involved with his treatments and medications. At times, it can be a blessing and a curse to have such an independent kid at such a young age. Khaleb is 9 years old and has -- for the most part -- been taking his meds and starting his treatments after I just mention it to him.
When Khaleb was born, finding out that he had cystic fibrosis was a blow that knocked us back but not down. I made the rookie mistake of Googling “cystic fibrosis,” and if anyone was watching me at the time, they would have thought that I was auditioning for a part in “Gone With the Wind.” Seriously, I may have even thrown the back of my hand to my forehead and almost swooned. I had my “as God as my witness” moment when I decided that he may have CF, but CF does not have us.
I made the decision that I was going to raise Khaleb with knowledge of cystic fibrosis and how it can affect his life, but I was not going to allow it to control his life.
As much as I am a fan of John Travolta, I was not going to have my son live like “The Boy in the Plastic Bubble.” I made it my mission to make Khaleb's day-to-day life as normal as possible. When it was time to take meds, I took my meds. I told him, “Look, Khaleb, Mommy has to take meds so she can be strong and healthy. Do you want to be strong and healthy also?” When he would say yes, I would then explain to him how -- and why -- his medication was different from what I was taking. Some days were not as easy as asking that question, but soon it became so normal that he did not question me.
When it came to treatments, it was easy to get them completed at first because -- as a baby and toddler -- the hitting on Khaleb's chest, back, and sides would put him to sleep. This was -- of course -- before he got the vest.
Once he got the vest, the fact that it shook his voice and made him sound like a robot was just so awesome, there was no complaining when it was time for treatments.
Oh, how I miss those days! When Khaleb started going to daycare and spending more time with other kids around his age, he started to realize that not everyone was taking medications every time they ate, needing to do vest treatments, using an inhaler, or doing breathing treatments. When I got the, “Mom, my friend Jack does not have to take medicine or do treatments. Why do I have to?” I was ready. I was waiting for this day to come, because we all know that our children will have that “wait-a-minute” moment. So, I took Khaleb, and we sat down with the “Who I Am” book that we were given early on. We had read the book several times before at this point, so he was so familiar with it and he could read it to me. But, now, he could answer my questions and ask his own questions if he had any.
I started by asking if Khaleb thought he was like anyone in the story. What made him like the character he named? At first, he would always pick the friend Paul because he was a boy, but then he started to notice the pictures and put the words together. He then started to see that he had more in common with the girl, Patti, who had CF. He then asked why God gave him cystic fibrosis and not someone else. I told him that God knew that he would be able to give cystic fibrosis a run for its money. He looked at me and asked if he could have the money cystic fibrosis had without running.
Soon after this conversation, Khaleb started to hide his medication. He was doing his treatments because there is no way to fake using the vest or doing airway clearance techniques. When I would give him his meds to take, he would pretend to take them and then hide them. This was his attempt to control what was going on. I would see a pill here or there, but it was never a large enough amount to make me think that Khaleb was not taking his meds.
When Khaleb started to have greasy stools and passing more room-clearing gas, I would ask him if he was taking his medications. He would always say yes. Fast forward to me doing a full deep clean of the house where I moved the freezer away from the wall to clean behind it, and I find the jackpot of pills that Khaleb had been stashing there. He had about three different hiding places that I discovered.
I did not immediately let on that I had found his stashes. I waited and started asking him questions about how he was feeling and what was going on with him. He finally admitted to having stomach cramps and that he had been having accidents where he needed to change clothes because he passed oily gas. I asked him if he knew why this was happening, and he said he did not know. I asked him if he would like me to explain why this was happening, and he said yes. I pulled out the Ziploc bag of medication that I found and told him that had he been taking his meds like he said he was, those things would not happen.
I took that moment to break down each medication Khaleb was taking and educate him on what each medicine did and what would happen if he did not take it.
By the end of our conversation, he had a full understanding of all his medications. If he did not know the name of the medication, he could describe it and knew why he was taking it. I told him that I am his Mommy and I can help him fight cystic fibrosis as much as I can, but I will never know how it feels to have it. I do not know how it feels to pass gas that can clear a room or have stool that can stain my clothes. I explained that since he knows how that feels and he does not like how he feels when it happens, then he needs to make sure that he takes his medications so those feelings do not happen again.
Explaining that and ruining his favorite pair of Batman underwear with a greasy stool episode appears to have been enough to get Khaleb to make sure that if I don't mention his meds, he will say, “Umm, Mom, I need my medicine.”
Interested in sharing your story? The CF Community Blog wants to hear from you.