Thursday, March 31, 2016

For Truth.

Truth is:

Having a child with cystic fibrosis is hard. It is time consuming, expensive, ever changing, and constant. Cystic fibrosis never takes a break no matter what else is attacking your body it still continues to fight too...

While R was battling his viral bug it was a real challenge to fight CF with all we had. Honestly, I just wanted to click pause on CF and only tend to the viral bug. I wanted to cuddle my little man, lay in bed, watch cartoons, and have a few sick days just healing from 104 degree temperatures. I wanted to feed him little snacks without worrying about calorie counts or pushing enzymes. I wanted to skip the numerous medicines and treatments for a few days. I just wanted my poor little man to simply be sick without dealing with cystic fibrosis too...

Instead of just being lazy and comforting my sick guy we were still battling CF. 


I held my screaming child and hooked him up to a machine that shook his sick self vigorously for 30 minutes. I gave him 3+ breathing treatments as he kicked, screamed, and cried. His eyes looked up at me with desperation and pain. My heart broke. My eyes quickly filled with salty tears which then slowly slid down my cheeks. I am R's biggest fan but in moments like this I feel like his worst enemy. I was literally holding him down forcing him to do treatments. Although I tried to calm and reassure him nothing seemed to mend his broken heart. All he saw was his mom slowing crying, singing Peter, James, and John, holding him down and letting cold mist blow in his nose and mouth. He felt miserable and I was unable to ease his pain instead and I just created more. Moments like this remind me how much I dislike CF...


As if doing nebs, vest, and being sick wasn't enough R was then required to take numerous meds and do his aerobika. I felt so done. Worlds worst mom right here. I just tortured R for over 30 minutes now I gotta pump him full of medications... Once again, I held his little head against my chest and dispensed 3 viles of liquid medicine, followed by a vitamin and two enzymes. Physical exhausted he still managed to put up a fight. Gagging, kicking, squeezing, and screaming as I forced the meds down. Once all was swallowed, finally I was able to apply his special creams and lotion and cuddle my little man to sleep.

I believe that all night tears remained in my eyes. Exhaustion, fear, and heartbreak covered me like a blanket. All of my being felt broken. I was so upset R was sick and angry that CF still required our attention. I just wanted R and I to run away to a mystical land and just play for a few days. I wanted to see his smile and hear his laugh. I wanted to touch his salty skin without it feeling 200 degrees. I wanted to be able to help my child vs cause him more misery. I can't stand CF on days like this. When everything is overwhelming and you still have to deal with CF. My poor child felt horrible and his mom tortured him even more... Yes, it was for his benefit but I don't believe that either of us saw it that way... 

I'm sorry R that I require you to do treatments every day. That I push meds and enzymes and food 24/7. That I expect so much out of you. I'm so sorry that I often fail you as a mother. I'm sorry that there are so many moments when I cannot help you the way you need me too. I wish I could take your CF and all of your viruses in the future. I wish we could run away to a mystical land and play with balls and bubbles all day when you feel hurt or icky. Although I can't fix everything and remove all your pain I can promise to always tackle it with you. Right by your side I will always be fighting anything trying to cause you harm. I promise you this, that I will devote my all to you and I will always love you unconditionally. No one will ever love you like I do, I promise.

I'm sorry my dear child that CF has to be a priority in our lives. I wish you could simply be sick without worrying about addition treatment plans to tackle an underlying condition... 



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