21 August 2013

Avonlea's Cystic Fibrosis Test Results

Last Friday, Brian and I learned that Avonlea's newborn screening came back:

Avonlea does not have Cystic Fibrosis!! 

We are beyond elated and consider the gift of a healthy baby as a huge HUGE blessing!

We are thankful to know Avonlea will not have to battle this awful disease.  Our hearts are full to know she will not feel the slow suffocating effects of Cystic Fibrosis and, God willing, will not know a shortened life expectancy.  

However, as relieved as we are, I have found this news quite bittersweet...

News that Avonlea does not suffer with Cystic Fibrosis has not been something I have been ready to scream from the rooftops, as I had expected I might want to do if it came back negative for CF.

In fact, there has been a part of me that has preferred to keep it quiet and internal.  I believe it is because I know that while our news is good, for so many of our friends who have gone on to have more children, they have not all received such fabulous news.

Many of our friends with more than one CF child have gotten the call letting them know their other child also has Cystic Fibrosis.  So, our news, while fantastic, serves to remind me that good health is not an entitlement.  Good health is a gift.

My feelings towards Avonlea's test results are also tempered by the fact that, although his baby sister will not know what it's like to have Cystic Fibrosis, Bennett does not get the luxury of being CF free.  And, until there is a cure, there is nothing I, as his mother, can do about it.

Sure, it feels really good to know two of our children don't have to suffer from CF but it breaks my heart beyond measure to know that still one of our children does.

I have had to address this conflict within me - how can I fully celebrate Avonlea's good health when I can do nothing to take away the fact that Bennett's health is going only to deteriorate over time?  And is it right for me to rejoice at the news Avonlea is healthy when doing so almost seems to highlight the fact that Bennett is not?  Does celebrating Avonlea's healthy body place even more disappointment on the body Bennett was given?

I carefully shared this news with Bennett this weekend.  He and I were on my bed while I was cuddling Avonlea.  Bennett was in a playful mood, as usual, and was chatting about his baby sister.

I casually asked Bennett, "Bennett, does Avonlea have Cystic Fibrosis?"
Bennett shook his head no and then said, "I am the only one [in the family] who has Cystic Fibrosis."

But before I could say anything else, Bennett added, "I'm 'pecial."  (Bennett pronounces almost every word that begins with an s as though the s is silent.)  He added, "I'm 'pecial...I get to do 'pecial things."

I smiled and validated him, "yes, you are special.  And you do get to do special things, don't you?"
Our conversation ended right there.

It broke my heart to have to tell Bennett that even the baby sister who was just born doesn't have Cystic Fibrosis like him.  How lonely and abandoned I felt for him, and imagined he might also feel for himself.

But I what I saw in that moment was that Bennett doesn't necessarily see himself as being the un-lucky one.  Even at 3 years old, Bennett is learning how to see himself having Cystic Fibrosis as something of value.

His little innocent response, "I 'pecial" reminded me that, even in the light of Avonlea being born healthy, I don't have to feel sorry for Bennett.  God is taking care of Bennett, giving him what he needs every step of the way as he works through his own acceptance and understanding that he has Cystic Fibrosis.

This brief conversation with Bennett served to calm my motherly heart and reassure me that rejoicing in the good that has been given to one child does not take away from that which is not given to another.  God is present in both situations, in both joy and grief.

And so, this is my challenge as a mother - to embrace what God has given me, whether it be the gift of a child with Cystic Fibrosis or the gift of a baby girl who is healthy.


  1. You are so right. Our kids teach us so much, don't they! Thanks so much for sharing.

  2. I'm so excited for you that Avonlea is healthy! I'm glad Bennett knows he's 'pecial. :)

  3. Aww, bless Bennet!So glad about Avonlea.

  4. Congratulations on your beautiful, healthy baby girl! She is precious. I have been following your blog from Tampa, FL and love hearing the stories about your sweet family. I am pregnant with my 2nd and my husband and I are both CF carriers - waiting to find out until birth about the health of our child. I wish you all the best!

  5. Touching post, Breck. Beautifully expressed, as usual. You're such a great mom and you look so happy. Much to celebrate all around!


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