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Cystic Fibrosis and Dying

Monday, September 10, 2012

On the way home from the store today, as I was telling the little boys of our evening plans, Bennett began protesting his evening vest treatment.

Sitting in the car at a stop light, Bennett began begging, "no mass and best" (translation: "no mask and vest").
Oliver quickly piped up, "But, Bennett, you have to do your vest.  Or you will die."

I stopped breathing for a just a second.  I was surprised by Oliver's candid response.
I looked at the boys in my rear view mirror to see how they would react to what Oliver just said.

Would Bennett begin to cry at the sound of this news?  Does he even know what "dying" really is? Would Oliver seem bothered by what he just said?  Would he ask me to reassure him this was true?

Neither child did anything.
They each accepted this information without issue.

I decided to offer a caveat, hoping to cushion the blow.
I said, "Well, he isn't going to die.  But he might get sick."
...to which Oliver added, "Yeah, Bennett, you might get sick.  But then, if you get sick, you could die."

I couldn't help but nod.  It is the truth.

Doing twice-daily breathing and vest treatments are a matter of life and death for Bennett.  There isn't much benefit to hiding this information.  If it comes down to it, I will say this to him myself one day...just like I said to Bennett today when he refused to hold my hand while walking through the store parking lot: "You must hold my hand so you don't get run over.  I love you too much to not let you hold my hand."

The conversation about vest treatments and dying ended as soon as the light turned green.  The boys went right back to playing in their carseats.   But, as I pushed the gas pedal, my thoughts on the topic of death continued.

I often feel torn as a mother of a child with Cystic Fibrosis on whether or not to share the heartbreaking life expectancy number with those around me as I know it will surely get back to my child far earlier than I would ever want.  Do I talk about death?  Do I pretend it's not on my mind all the time?

A recent conversation came to mind.  A few weeks ago, at a monthly gathering of parents at our church called "Emerging Parents," the topic of discussion was how to deal with death when raising our children.

I didn't think much of it at first.  We talked about how children experience death and where they are cognitively at this point in our parenting.  We talked about how many children's first encounter with death comes from the loss of a pet or of a grandparent.

But, sometime during our discussion, it hit me: my children (Oliver and Bennett) are likely going to confront the issue of death and dying much sooner than their peers.

Today's brief conversation in the car is a reminder of that.  Another reminder is a day this summer when a sweet little 1st grade friend of ours said to me (while also in the presence of Bennett), "I'm really sad that Bennett is going to die on his 37th birthday."  I smiled because I knew his little first grade heart was so good.  He was communicating to me how sad he felt that Bennett's life is likely to be cut short due to CF.  But I also felt so sad inside.  It was the first time anyone had ever said anything about Bennett dying early, right in front of Bennett.  I knew it was only a matter of time.  I just hadn't expected it so soon.

As nearly two dozen parents sat nestled in a quiet room of our church discussing raising children with a godly view of death, I began to hear some insights on the topic that I reminded myself to store away for a day when I might need them.

Today, on the ride home from the store, I mentally pulled out some of these insights to remember.  I thought I would list them here for a day when the topic reemerges once again someday:

One of the ways I can help my children with the topic of death is to teach them: they do not belong to me.  One of my friends made the point that he tries to teach his children that God loves them more than even he (their father) does.  So, he encourages his children not to be scared of death but to realize death is a home-coming of sorts.  They will go back to God, from where they came.  My friend said he tries to acknowledge with his children that death is difficult and very sad because we leave the ones we love but that in every way he can, he tries to help them see that God loves them, cares for them and, when they die, they will go be with Him. 

"For none of us lives to himself alone and none of us dies to himself alone.  If we live, we live to the Lord; and if we die, we die to the Lord.  So, whether we live or die, we belong to the Lord." Romans 14:7-8

* Another way I can help my children with the topic of death is to remember: they do not need to know everything now and they will indicate when they need to know more.  This may be the biggest blessing of parenting...kids need only small bits of information at a time.  I don't have to have all the answers right now.  Like the topic of sex, kids need only age-appropriate information on the topic of death to the extent of what they can handle.

When Bennett was first born, Brian and I went to meet with a Child Life Specialist at Scott and While Children's Hospital.  We were given the chance to ask as many questions as we wanted about our newborn son's fatal condition and how to approach the issue with our other son, who was 2 at the time.

I'll never forget when Brian, breaking into tears, asked, "What am I going to say to my son when he asks me if he's going to die?"
Without missing a beat, the Child Life Specialist, "You won't have to worry about that.  Your other son will ask you about it first."

She was so right and I am so glad she warned us this would be the case.  This has helped us see that death and Cystic Fibrosis are not just topics for Bennett but topics for our entire family to address, little by little.

Our approach to the topic of death with our boys has been to allow them to guide the conversation as they are ready.  We want to neither minimize the significance of death nor over dramatize it.  We believe, for us, the best way to balance between the two is to let the conversation of death be child-lead.

* A last way I can help my children with the topic of death is to remind them: death is not the end.  One of the beliefs we share with our boys is that, as Christians, we do not believe death is final.  Jesus is the reason death no longer has the final word on our lives.  Death may be a separation but it is merely temporary.  Our life exists beyond our present life here on earth.

One of the songs I really enjoy listening to right now is Matt Maher's "Christ is Risen."  I love the whole song but here are my favorite lines:

"O death, where is your sting?
O hell, where is your victory?
O church, come stand in the light.
The glory of God has defeated the night."

I have more than once wondered why I like those particular lines of Matt Maher's song so much.  Today, as I was driving back from the store with the boys in tow, pondering the topic of death and how we may have to confront the topic earlier than any mother would want to do, I realized just why that part of the song feels particularly important to me.  These words speak close to my heart - they remind me that while, at this point, my child's life expectancy is significantly less than his peers, I can hold on to what I know is true: Christ is risen - death does not have the final word on my son's life.

I would not say that I have come to grips with the seriousness of my son's disease.  There is no point where I have found myself "used to" the idea of a life expectancy of 37.  But, I believe that I am always working to find peace, while knowing it is a reality.

Thanks to Oliver's encouragement, Bennett did finish his vest and mask treatment tonight.  Just like he does every morning and every night before bed.  I love him too much not to let him do his treatments.

6 Responses to “Cystic Fibrosis and Dying”

  1. This is a great post. As the aunt to a two year old with CF, and mother to a two year old without CF, I've been focusing on teaching my son about the importance of keeping his lungs healthy (to help keep him from infecting his cousin with anything) and about how he can't give his cousin any food without us knowing because he has to take enzymes first. I haven't even thought about what it will be like when the topic of death comes up. I think my heart will break in two.

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    1. Thanks for your comment, Kiara. I think it's wonderful that you are focusing on teaching your son about the importance of keeping his lungs healthy. I think that's such a good idea for our non-CFers too! You wrote, " I haven't even thought about what it will be like when the topic of death comes up. I think my heart will break in two." I SO know the feeling!!

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  2. Thanks so much for sharing your thoughts on such a delicate topic. Your blog is a wonderful resource, especially in regards to Cystic Fibrosis. My wife and I recently had our first baby who has been diagnosed with CF. It's so nice to read about the experiences of others who have to deal with this disease. Please keep up the great work! Feel free to meet our family at www.lakeviewcrew.com if you have a chance.

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    1. Ted, thank you again for this comment and for sharing your story. I just cannot get over how cute Adalyn is!! I have tried to add your blog to my blogroll but it doesn't seem to come up as an RSS feed. Do you know if you have a feed I can use? I'd love to share your website with other CF families. Take care!

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  3. What an honest post (and I'm sure it wasn't easy to put those thoughts out there). Children have such simple understandings of the the world and their communication is so amazingly honest.

    This was my biggest fear for a long time. How will I explain death to Alex? I don't want to scare him but I want him to understand. I'm sure he will ask the questions and I will work to provide age-appropriate responses. Your explanations about religion and explaining heaven are great resources. Thank you for sharing!

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    1. Thanks for your comment, Jenny. I suppose we have no choice but to explain death to our kids by "figuring it out along the way." But I know one thing about your little Alex - there is nobody better to explain it to him than you. And i know you will do so, carefully and age-appropriately, with the beauty, grace and strength you continue to demonstrate day after day in honor of his father.

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