To My Child With Cystic Fibrosis: Please Outlive Me

To My Child with Cystic Fibrosis: Please Outlive Me

cystic fibrosis

There are times where it hits me out of nowhere. Brushing my teeth, driving to work, folding laundry … times where I am doing the most mundane things and my guard is down. It’s at those times that my mind reminds me “You might have to say goodbye to him sooner than you would like.”

Our son has an incurable, life-threatening chronic illness. Jax has cystic fibrosis (CF). CF is an unpredictable, life-shortening genetic disease. It’s an ugly disease that causes a myriad of complications, mainly lung infections and respiratory failure.

We found out about cystic fibrosis on a Friday afternoon. Jax was eight days old, and it had been a long day. He and I were asleep on the sofa when my husband answered a call from our pediatrician. She told him Jax’s newborn screening had come back positive for CF, and we needed to head to Tulane Medical Center in New Orleans early Monday morning for confirmation.

I spent all weekend Googling. “LIFE EXPECTANCY” “DEATH RATES” “END-OF-LIFE” “PROGNOSIS”

I had never heard of cystic fibrosis, and I thought I was doing what I needed to be doing by researching online. Looking back that was the opposite of what I needed to do. Tulane confirmed Jax’s CF Monday afternoon. The next day we began our CF journey.

Here we are, almost eight years later, and honestly, it’s not any easier for me. I can go days without thinking about it all. Then out of nowhere, it’s like a freight train to my body. I look at him playing from across the room and my heart just breaks. Will I have to bury him one day? Will he leave this earth early? How would I continue on without him?

Life expectancy for those with CF increases every year, but day after day, I read about another person taken by this disease. A lot of the time it is children Jax’s age. I have mourned many children’s deaths from various online CF mom groups that I am a part of. How am I supposed to handle that if it’s him?

jax 2

I don’t cry in front of Jax. I don’t show any signs of worry in front of him. He has known he has CF for a few years now. He talks about it to anyone who asks, and it doesn’t seem to faze him yet. All of the medicines and breathing treatments and hospital visits are just something he has to do, he has told me. He is still young enough to want the attention that it brings. I worry about when he is older and he wants a “normal” life. When he wants to have the children CF won’t allow him to have. When he will be in the hospital while life continues outside without him.

Grief isn’t something you can prepare yourself for, I am finding out. Jax has stayed relatively healthy for the past seven years. There are even times I second guess his diagnosis because he is doing so well. Then I see how his fingers are starting to club and how he is unable to maintain a weight gain, and it all floods back. Sometimes my mind gets away from me and I start picturing how his life, according to his diagnosis, will be. Hospital beds, lung transplants, wires, g-tubes, etc. That isn’t what I want for Jax. He does not deserve this prognosis.

Don’t get me wrong … I am not all doom and gloom. For the most part I put it all aside. I have to or else I am of no help to him. Without a set of two attentive, involved parents, Jax would never make it. If this is the life we have been given, I have to make the most of it. If Jax leaves this earth before me, I have to appreciate him in the here and now. He cannot see the fear behind our eyes. We have to stay strong for him. Taking it day by day is the only way we can get through this.

jax 3

Tonight Jax is tucked in his bed, sleeping away, and has no idea of the life that lies ahead of him. He does know this: his mama and his daddy love him deeply. If my sole purpose in this world is to be his support system, his advocate, and his voice, than so be it. I can’t think of anything I’d rather do with my time here than give him the best life he could possibly live.

I will see to it that it happens.

If you would like to know more about Cystic Fibrosis or how you can help find a cure, visit the CF Foundation website.

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11 Responses to To My Child With Cystic Fibrosis: Please Outlive Me

  1. Katy April 19, 2016 at 12:14 pm #

    I know many men with CF who have had special procedures that allow them to have their own biological children. Hoping he continues to stay healthy for a long time. Maybe there will be a cure before he has to face the prospect of transplants.
    – I am a 31 year old CFer. Keep fighting. My biggest blessing was having amazing parents who were my support system and always cheered me on to live my life without setting limits because of CF.

  2. Taryn April 19, 2016 at 8:28 pm #

    From a CF mum in Australia, thank you for this blog. It’s exactly how I feel. It’s just so scary and always will be. My husband is a funeral director and the day of the diagnosis we were travelling to the hospital to meet with the CF team when he received a call from a mother he had been helping. She was arranging the funeral for her 21 year old son who had died in a car accident. She had lost another son tragically a few years prior. It made me think that she didn’t spend her life worrying about their death, she most likely enjoyed them. So most days, I try to do that too as there is a good chance that children with CF will live much longer lives. Although as you said, on other days that positive perspective is hard to hold onto. Wishing Jax all the very best. You sound like a great mother.

  3. Colleen April 19, 2016 at 8:43 pm #

    I am a the mom of a soon to be 20 year old Cf son and you spoke so many words straight from my heart. I wish I could tell you it gets easier, but you would know I am lying because with Cf it can’t – it doesn’t. But if you keep the attitude you have – it is the best life you can give him (and you). My son is living a full life right now – I know how it is wondering if he really has cf one day and then the next day if the shoe will drop But for now we take it one day at a time and keep reminding him that he’s an overcomer !! He is finishing up his second year at University of VA and we could not be more proud of him. I am hope filled he will outlive me !

  4. Sandi April 20, 2016 at 3:52 pm #

    As a 28 year old Cystic myself you are doing everything right! Rest assured that when he wants to be “normal” he will be as long as you keep everything as normal as possible. Which, seems like you are doing just that. When I was growing up in thought I was the normal one and my friends were wrong because they didn’t take meds. It’s all in how you raise and show your children on how they reflect once they are older. The having babies thing isn’t a big issue as there are several ways of making that happen!!! Keep up the good work and Always Smile!

  5. Joanna Waller April 21, 2016 at 9:10 pm #

    From a fellow CF mama and fellow City Moms Blog contributor (Fort Worth) you are strong and your words speak life into Jax and all of us fighting the battle against CF. We WILL find a cure and our kids WILL outlive us. Sending love, hugs, high fives and tears.

  6. Jacqueline Finley April 27, 2016 at 9:29 am #

    Thank you for sharing your story. My son was diagnosed with a rare genetic disorder called Shwachman Diamond Syndrome. It has many similar characteristics of CF. In fact, that is what they thought he had until his genetic results came back. It has only been 8 months since we found out. Thank you for your inspiration. Praying for a cure for CF and SDS. Keep staying strong for your boy!

  7. Supporter April 29, 2016 at 1:38 pm #

    There are a few daily bloggers (The Frey Life) where they document every day life with CF. I found it to be very helpful to know that you are not alone in a tough journey.

  8. Megan October 4, 2016 at 2:18 pm #

    A girl I grew up knowing and her sister both were diagnosed with cf. they have both had full lung transplants and are living amazing lives!!! The younger sister has since adopted two kids and the older had her own child against doctor wishes before the disease progressed.

    The sisters are about 35&40 and living life thanks to organ donors. They haved gained weight and are very active. Yay!!!

  9. Michelle October 5, 2016 at 7:41 pm #

    I feel the same way about my 9 year old boy with CF. I fear the loss of him and I try so hard to push it all away. Thank you for sharing your thoughts.

  10. Melissa October 14, 2016 at 8:36 am #

    Beautifully written. I am also a CF mum (from Aus). You encapsulated my reality in your words. Thankyou. ❤️️

  11. Leslie D April 19, 2017 at 8:33 pm #

    Dear Misty,
    I thought you could use some hope and I wanted to share something with you, my daughter’s teacher, highly accomplished has her Masters and Ed.D is teaching 4th grade in CT. She has CF and has had a liver, lung and kidney transplant and is happy, healthy and teaching in a classroom. She is married and has what she calls her fur babies. Two dogs she loves to play with and walk! She really is living a wonderful life and goes once a month to the Cleveland Clinic for treatment. She is living proof that it is possible for your child to thrive. I can only imagine how much you must worry but have faith that there is hope and people who are praying for you and your child. Sending you strength and support.❤Leslie

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