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Loss in the CF Community

Tuesday, February 26, 2013

I knew three years ago when I began making friends with other CF families that loss would eventually be a part of our friendships.

However, I didn't know it would come so soon, like with the sudden passing of my friend Jennifer Tomerlin's little boy Bryce (2.5 years old), who died yesterday after undergoing a procedure to address complications with his Cystic Fibrosis.

I haven't yet met Jennifer in person, as I haven't yet met most of the CF families I know.  Jennifer's little Bryce would have been great friends with my Bennett.  They were about the same age and deal with the same disease.  But Cystic Fibrosis does not allow those with the disease to be with each other as the risk of cross-contamination of infection is too high.  So, we knew getting to meet in person would be a long shot.

Even still, I was delighted when, several months ago, Jennifer mentioned she was coming to Waco for an event and wanted to meet up.  We ended up being unable to coordinate our schedules but the delight of meeting another CF mom was thrilling.  I have a long list of CF moms I would love to meet some day.  Until then, we depend on Facebook posts, blog entries, phone calls and texts to stay connected.

It's important that was stay connected with other CF families.  We use our CF community to find out about new treatments, medications and research studies that might benefit each of our children.  But it's also important for our emotional health, especially us CF Mamas - to know other families like ours exist and to gain support through the unique challenges we face.

When you make friends with a family who has a child with a terminal illness, you take a risk.  Your risk caring deeply about someone whose death you may experience at some point.

I know that, without a cure, I will continue to witness the death of the children whose the families I have come to know over time - many of them with children Bennett's age.

I was warned about this from a nurse at the hospital when Bennett was first diagnosed: Be careful making friends with CF families, you may experience the death of their children, which can be very hard on you, knowing your son will face the same fate.

But that hasn't stop me from building relationships in our CF Community.  I know that if need them now, I will need them then, too.  And, I believe, they need the same from me.

Even still, it was hard to swallow hearing my friend Jennifer's baby boy died yesterday.  He hadn't necessarily been sick.  He had gone in for a rather routine surgery and come out doing well.  Suddenly, he was on his death bed - something that tends to happen more to children with underlying chronic illnesses - but something that can ultimately happen to any of us.

But I hadn't expected to begin losing our collective children so soon.  I hadn't expected to walk through mourning with a mother who had just barely given birth to her child only 2.5 years ago.  I hadn't expected it to happen to someone I know.

The loss of Bryce has been hard for me to process personally.  It's natural that I would find myself placing my son in his place and feeling the inner pain his mother is likely feeling right now.  I know what it's like to be in the hospital - to see the wires connected to my baby boy's delicate body laying limp on the bed - to hear the beeping sounds of machines that communicate whether or not his organs are functioning - to see the somber faces of doctors who know more than you at the time but who reveal through their long faces grief is ahead.

I am reminded that Bennett's life hangs in the balance, always a complication or two away from loss.  But even knowing that, it's so easy to forget how quickly life can escape our bodies.  We may not have a cure yet but we have treatments, medications, doctors and hospitals.  Even knowing this, I can easily be lulled in believing we have time.

Surely, life can't be that tenuous.  And yet, it is.
...not just for those with Cystic Fibrosis...but for all of us.

Bryce's death is another reminder for me that no one's life is guaranteed beyond this moment.  My child and husband without Cystic Fibrosis are also living on borrowed time.  This is why I must live presently, always aware of what exists on earth but also aware of what exists beyond this place we call home.

My prayers are with Jennifer, husband Nathan and big sister Bri who just lost her brother. Their grief must be unbearable.   (To see the delight Bryce brought to his family, visit their blog: http://www.breathingwiththetomerlins.blogspot.com/)

4 Responses to “Loss in the CF Community”

  1. Beautifully said Breck! As a fellow Cf Mom to a 3 year old I too cannot help but process this heart wrenching loss in a more personal way. My heart breaks for this beautiful family. As you said we are all infact living on borrowed time, so hug your beautiful boys and keep on loving and living,life is just precious! Hugs to you and your family and rest well sweet baby Bryce, xx

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    1. Natalie, I'm sorry your 3 year old suffers from this disease as well. But I appreciate your sharing how this story has affected you too. It certainly helps to know we are not alone in this fight and in our grief. Thinking of you and your family s well!

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  2. This breaks my heart. I can't even imagine her pain right now. Praying for their family and the families of all those with CF.

    Do you know if there is some kind of CF mom's facebook group? I wanted to get connected with other moms and I do follow some blogs but just wondering if there was another way to stay in touch.

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    1. Amy, there is absolutely a CF mom's facebook group and it's really wonderful. It's called "CF Mamas" and can be found at: https://www.facebook.com/groups/Cfmamas/ Let me know if you have trouble getting in but it should be a matter of requesting to be a part of the closed group. I hope you will find this group as helpful as me. You might also find the website CysticLife.org to be equally helpful for connecting with other CF moms! Hope this helps!!

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