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Archive for December 2014

Merry Christmas from The Gamels!

Friday, December 26, 2014

This picture so perfectly illustrates our life right now. :)


Merry Christmas! 





Photography by our favorite little elf, Khimberly Caton @ Snaptastic Shots.  
Boy's bowties designed by our talented friend Kat @ Babybowtie.com.

Visiting Santa 2014

Monday, December 22, 2014

Well, visiting Santa didn't go as well for Avonlea as for the boys this year...  

Santa 2014
But, don't worry little sister, it's a right of passage.
Bennett went through the same thing in 2010.

Santa 2010

"When am I going to die?"

Saturday, December 20, 2014

One of the hardest things about raising a child who faces a premature death is knowing that one day your child will come to know he faces a premature death.

I had heard from other CF moms that this often happens around upper elementary/junior high when children end up reading independently about Cystic Fibrosis and stumbling upon the reported life expectancy for those with the disease.  What I had not known is: sometimes, kids figure it out earlier.

Last month, after recognizing Bennett's irrational nighttime fears were becoming so draining for us at bedtime and that his unregulated behavior was becoming a problem at school, we arranged for him to begin play therapy.  I suspected something was going on, but I wasn't exactly sure what.

Play therapy is similar to talk therapy except instead of communicating through words, play therapy allows children to communicate their thoughts and feelings through the language of play.  The beauty of play therapy is children are able to open up about their feelings in their own way and on their own time.




It was only their second session together when, while playing with a plastic superhero toy and plastic animals on the office floor, Bennett stopped his play, looked up at his play therapist and said solemnly, "my superhero died and all the sleeping animals are freaking out."  

This was a powerful moment, according to his play therapist - the first time Bennett introduced the theme of death in his play, providing us all a window in to his internal thoughts.  His superhero toy represented himself in his play.

A few days later, I found no amount of coaxing, punishing or rewarding seemed to keep Bennett in his bed to go to sleep.  Sensing that it was intense fear preventing him from falling asleep, I finally laid down in his bed next to him and suggested that we pray that God would place angels around his bed to keep him safe.

At that point, Bennett turned to me and asked, "but what if I'm away from you?  Like under the sand with the crocodiles?"  Suspicious that he might be alluding to death, I decided to give him some kind of confidence that even in death, he would be ok.

I explained that God loves him even more than his father and I could ever love him.  And, I explained, even if he would ever find himself away from us, God would be there to keep him safe.

Bennett began to share about his fears about spiders and squids and sharks and kings (yes, kings, the bad ones).  I explained that angels would protect him from spiders, that squids and sharks were in the ocean far away, and that kings are typically not bad and not ones to fear.

Bennett then asked, "What is heaven like?"

Despite the glow of the night light the dark room hid my tears as they began to stream down my face.  I knew that what I told him in those moments would begin to create a picture for him of what it would look like for him to leave earth one day.

I shared how it is the most beautiful place with everything good and nothing bad in it.  I shared how it has all of his favorite toys in it, balloons and lots of gummy bears to eat (all things I know he loves).  I reminded him his great grandmother is there and that God is there ready to care for him.

Bennett's eyes got big and he seemed pleased with this answer.  Eventually he digressed into a one-sided conversation on Power Rangers.

Sensing he finally felt safe, I suggested that I leave and that he go to sleep.

But, at the slightest thought that I would leave, he cried out, with sobs so loud I thought he would wake his baby sister in the next room:

"I don't want to die!"

Oh, how my heart broke.  How could I be hearing these words come from my five year old!?  My son, who doesn't even know how to tie his shoes, was expressing how much he doesn't want to die...a fear that even most adults don't want to face in their most honest moments.

Bennett sobbed and sobbed.  I rubbed his back, wanting to sob alongside him.  When he finally calmed down, I asked, "why do you think you're going to die?" to which he replied, "I don't want to grow old."  What I eventually realized is his five year old mind associates "growing old" with death.





A week later, during the first few minutes of his third play therapy session, Bennett sat down and asked matter-of-factly to his play therapist:  "When am I going to die?"

His play therapist, a bit caught off guard, answered, "I don't know when you're going to die.  I don't think anybody knows.  It's hard not knowing, isn't it?"

After a reflective moment, Bennett nodded and said, "God is the biggest in the whole world.  And God doesn't die... does he?"  It was his effort to reassure himself that if she didn't know when he was going to die, at least he knew God would never die.

At the urging of my therapist who thought Bennett might actually believe his own death is truly imminent, Brian and I recently sat down and talked with Bennett about his fears of his death. 

We reminded Bennett that his lungs are healthy right now and that he is working hard with his treatment so there is nothing to indicate to us that he is going to die anytime soon.  


Brian and I shared that, even though we don't know when exactly he is going to die, we fully expect him to go to kindergarten next year... and then to eventually enter the 3rd grade...and later to enter junior high.  We shared that we, as his parents, fully expect him to graduate from high school, go to college, and to become a grown man.  And, we shared, we hope, he might even be an old man one day (to which he clarified he had no intention of being - since old men die). This all seemed very satisfying to Bennett.

We have noticed a great improvement in Bennett's behavior and nighttime fears since this conversation.  Even the play therapist has indicated she can tell in his play that a weight seems lifted from him.  Maybe he finally has some inner peace regarding some of these thoughts he was carrying around?

It's normal for children to think about death.  But it's not typical for a five year old to worry about his own mortality.  Bennett's fears over dying are directly born out of his life experience with Cystic Fibrosis.  

We aren't exactly sure where he got the idea he is going to die soon.  We have never told him this. But even the play therapist wasn't surprised to see him work through these things.  Kids with diseases like his often do.

----

Until recently, Cystic Fibrosis has been Brian's and my disease, one that Brian and I have carried for Bennett.  CF affects Bennett's body but, Brian and I, we have carried most of the emotional weight that comes along with knowing his disease is progressive and that, barring a cure, things aren't going to get better... that CF will take Bennett's life eventually.  

But, slowly, as Bennett awakens to the world around him, he is beginning to confront what it means to have cystic fibrosis.  It's hard to see him have to wrestle with these fears, but I am thankful that we are given time to do so together, in small increments.  

Thankfully, Bennett isn't going to learn about CF all in one day when he's 18.  His understanding about his condition, the challenges he faces and his need for a cure is one that will emerge slowly over time.  I see this as a huge blessing.  God will give us the strength we need to cope through each new understanding over time.

I pray to God I will never have to experience Bennett's premature death.  But I also have to be honest with the reality that Cystic Fibrosis is a disease of slow death.  Every living thing dies.  It's just that most of us, especially when we are healthy, don't have to think about it.

As I fall asleep myself tonight, I am thankful to be a part of such a meaningful moment in my son's life... the beginning of his own reconciling thalife on earth is not forever.

CF Clinic Update and First PFTs

Thursday, December 4, 2014

Today was Cystic Fibrosis Clinic Day at Dallas Children's Medical Center.  Today's clinic was focused on Bennett's continued struggle to gain weight.

We met with our new Cystic Fibrosis Doctor, Dr. Sharma (our other doctor recently transferred to Houston) who gave us the best news of the day: Bennett's lungs continue to look great!  But, Bennett's weight continues to be an issue.

Studies show people with Cystic Fibrosis at or above the 50th percentile with their BMI do better with their lung health.  Bennett's is at the 11th percentile.

Brian and I have known Bennett's inability to gain weight has been a problem for a long time.  But we have felt helpless.  We offer him whatever high calorie, high fat foods he wants.  But he tends to prefer turkey, oranges and gummies.  Bennett *can* eat and he will eat, at times.  But, overall, he's just not eating enough to keep himself at a healthy weight.

The issue with his low weight isn't so critical now but it will be should his lungs get infected (which is just a matter of time). Bennett needs those extra calories to give energy to his body/lungs to repair itself.  In addition, Bennett's low weight makes him vulnerable to getting sick and, once sick, vulnerable to getting sicker.  Malnourishment is a concern.

Outwardly, I try to be calm and level-headed but, inside, I feel helpless and anxious.  Despite oour best efforts to help Bennett gain weight, what we are doing isn't enough.

Bennett wants to please us and he often indicates he wants to eat...but he usually doesn't feel hungry.  He regularly complains his stomach hurts.  And he, like many with CF, struggles with GI issues when he eats high fat foods...enough to find them not very appetizing.  So, who would blame him for not eating?  The issue is not only that he must eat but that he actually needs more calories than healthy children his age.

Dr. Sharma offered me a few possible solutions: we could put him on a higher caloric formula or we could use calorie additives such as Duocal or Liquigen to his existing food.  I agreed that a calorie additive made sense and suggested that we also begin implementing a daily afternoon g-tube feed as well...something we haven't done in years.

Dr. Sharma thinks we may need to implement a day-time feed for only a short time "just to help him get him over this hump" as she believes social pressure will likely help him begin to eat more normally.  But, I'm not so sure.  At least we have the g-tube to use and we will use it to help him.  As much as we want his life to be "normal," Brian and I would rather sacrifice "normalcy" for good health.  I hate that he will not be doing a tube feed every day after school.  But, I am happy that this should help bring him back to a more optimal place of health.


I witnessed a special moment with Bennett and his doctor today.  Bennett saw a picture of lungs on the back of our clinic room door so he inquired about it with Dr. Sharma.  The doctor spent a few minutes talking to Bennett about how lungs work, specifically his.  Bennett listened intently.  And Dr. Sharma really honored his questions.  It was a neat experience to see Bennett begin to really want to understand his body on a deeper level and I was thankful for a doctor who took the time to care.


In between visits with the doctors, nurses, dietician and social worker, Avonlea, Bennett and I had a picnic on the clinic room floor.


Today, Bennett got to do something super special in the CF world.  Today was his first opportunity to learn how to do a Pulmonary Function Test (aka PFTs).  Megan, the respiratory therapist, first had Bennett to put on a pair of gloves.  Bennett loved this!  CFers must wear gloves when they do their PFTs due to infection-control issues as they handle equipment that must be shared between CFers.


Megan explained to Bennett that he was going to get to play a game on her computer.  She showed him an image of 7 candles.  Once set up, she had him blow as hard as he could to see if he could blow out all of the candles.


Doing PFTs at 5 years old is less about actually getting important information about the lungs and more about teaching the child how to accurately do a PFT.  It takes a few years for children to really get the hang of it.  But, once they do, PFTs become a very good indicator on how healthy or sick the lungs are at any given time.  From this point on, Bennett will practice/do his PFTs at every clinic visit for the rest of his life (typically 4 times per year).


This first time, Megan set up the computer to make it easy for Bennett to blow out all of the candles.  However, over time, Megan will begin making it harder for him so he can eventually get us a good reading of how his lungs are doing.

See Bennett do his first PFTs here:



One of the things Megan did not use this time but will eventually use with Bennett is a noseclip.  This will help prevent any air from getting out of his nose during the test.  On one level, the test looks fun - to see how hard you can blow.  But I've watched an adult do it before and it actually looks rather painful to force out every bit of air from your lungs, particularly when they are not feeling well.  I think Bennett is quite a champ to have to do this every three months for the rest of his life.


I had to include this sweet picture of Bennett playing in between visits from his CF team.  He enjoyed using the plastic Pulmicort model as a base for his superheros.


After our appointment, we went downstairs to take a picture with the Children's Medical Center Christmas tree.  We have a picture with Bennett almost every year with the hospital Christmas tree.  At this point, it's just tradition.


Bennett wanted to include some silly shots of him this year.

Our little monkey boy earned himself two Superman stickers for his good work today.  He was very proud of them!


We left today's appointment feeling a bit disappointed but also happy.  It is annoying when CF makes life harder.  But, we also realized how blessed we are to have Bennett as healthy as he is right now.