Saturday, December 20, 2014

"When am I going to die?"

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.

Thursday, December 4, 2014

CF Clinic Update and First PFTs

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.



Wednesday, November 26, 2014

Guest Speaker @ Cystic Fibrosis Foundation Event, Shreveport, La. 2014

Recently, I had the privilege of being the guest speaker at a Cystic Fibrosis Foundation event in Shreveport, Louisiana.  I grew up in a little town outside of Shreveport so it was such a gift to be asked to come back to my home state, where my heart will always be, to help raise money for Cystic Fibrosis research.



The annual event, called "The Finest," pays tribute to business professionals in the Shreveport/Bossier area who are up and coming within the community.  Each honoree takes on the role of finding a cure for Cystic Fibrosis by raising critical funds for research.  This year there were six honorees recognized.



The reception honoring Shreveport/Bossier's Finest was held on November 13, 2014 in the Ballroom in the El Dorado Hotel and Casino and included food/drinks, live entertainment (provided by Stilettos, a very talented local band) and a silent auction.  The event was MC'ed by radio personality Robert J. Wright, a local radio DJ I listened to when I was growing up so it was pretty surreal to have him give of his time and efforts to help find a cure for my son.  He's a great guy in person!  S3 Pump Service, as shown on the sign behind the band, was the event's title sponsor.  They cannot be thanked enough for their support in making this year's event successful!!





Each table at the event was decorated with pictures of my brave little one.  This particular picture of Bennett is when he was getting his throat culture, as he does at each checkup, at his Cystic Fibrosis Clinic appointment.  A throat culture tells us what bacteria might be hiding in his lungs. 

After the "Finest" event, which Bennett did not attend, I gave Bennett a gold paint pen and these pictures so that he could write his name to say thanks to those who made this night possible.  I was surprised how well Bennett can now write his name and how much he wanted to do it over and over again.  Bennett seemed to understand he was participating in thanking people for helping us find a cure for CF.   In fact, he seemed very proud of himself for being so useful.  At one point, Oliver noticed what Bennett was doing and asked if he, too, could use the gold paint pen.  Before I could answer, Bennett looked up from his work and confidently, knowing the answer, asked Oliver, "Now, Oliver do YOU have Cystic Fibrosis??"  It was clear that Bennett found his writing thank you notes to be a privilege and one that he felt very special getting to do.  He wasn't very interested in sharing the opportunity with his brother.  I loved that he is beginning to see some perks to his disease. :)





I wanted to share the six honorees who helped us raise more than $52,000 for a cure for Cystic Fibrosis:


This is honoree, Cory Boyett, who works for Boyett Printing, accepted his award from Brandi Jones, in blue, the Development Director of the Cystic Fibrosis Foundation's Shreveport branch.  Corey started an email campaign to friends and family asking for them to help him raise money for a cure for Cystic Fibrosis.



Honoree Hillary George, who works for Bulldog Oilfield Services, raised money by sharing with everyone she knows the need to raise money for a cure for CF.  CF doesn't give us a break and Hillary did not take one, either.  She was even busy raising money for Cystic Fibrosis research at our children's practices.  What a gift it is that another mother would do that for my child, even if she didn't know that's who she was doing it for.



Dr. Jennifer Lee of Lee Family Medicine Clinic in Sibley, Louisiana sold t-shirts to help raise money for Cystic Fibrosis.  Dr. Lee has a cousin with CF so she has a personal connection to the disease and finding a cure.



Britney McDow, realtor with Diamond Realty and Associates, raffled off beautiful diamond earrings to raise money for the Cystic Fibrosis Foundation.  I had the privilege of drawing the name of the person who won the earrings that evening.  I can't remember who it was but it was a guy.  He's gonna make some lady very happy!



Vice President of Minden Bank and Loan, Hugh Wood, helped raised money for CF research.  I actually brought Hugh to my senior prom.  Never did I ever think at my senior prom, my date that night might one day volunteer to raise money for a cure for my son.  But I am so thankful he did.  


Nichole Scates, Vice President of S3 Pump Service, went above and beyond to raise money for a cure for CF. This girl is simply amazing and a heart of gold!!



This is Hugh and his wife, Lucia.  They have two adorable little girls my boys age.  



Dr. Jennifer Lee and her husband Jeff, both are such great people.  They also have two little girls.



I am so appreciative to my dear friends Clint and Jessica who came out the day before their 16th anniversary to help us raise money for a cure and to celebrate all that we are working towards with regards to extending Bennett's life expectancy.  Clint and Jessica have a two children, including daughter who shows two rare mutations for Cystic Fibrosis but she is asymptomatic. The doctors call it CF related metabolic syndrome.  They feel very blessed not to have to life with CF day in and day out, but they also live with the anxiety that the doctors are unsure how Bella's mutations will affect her in the future.  So, they have a very special place in their heart for finding a cure for CF.













Andrea, Bill and Candy

Hillary and some of her great supportive friends!



Casey and his wife Sarah, who I wrote about in an earlier blog post, came to the event, which was such fun for me as I had looked very forward to thanking them in person for all their support and love for our Bennett.




One of my best friends from childhood Kyla (we grew up down the street from each other) and her husband Michael came out the event.  Kyla, mother of twin girls, is a pharmacist so I enjoyed talking to her about our relationship with our local pharmacy.  Cystic Fibrosis has us at our local pharmacy practically weekly!



I was very honored to have my youngest brother Barrett and mother Cindy with the event with me.  It's special to be able to go home and share our need for a cure.  It's even more special to have my family by my side.



Thank you Brandi (organizer of this fabulous event) and Amy (Executive Director of the Dallas Chapter of the Cystic Fibrosis Foundation) for all you do day in and day out to help us raise money for a cure for our son and all those with Cystic Fibrosis!!

Sunday, November 23, 2014

Oliver's 7th Birthday Party

Oliver, who turned 7 years old in November, asked for a "body-themed" birthday party this year.   At first, I thought he was merely talking about a science-themed birthday party...but I quickly learned that, no, he was specifically asking for a "body-themed" birthday party! 

We're pretty confident that the reason Oliver finds the body very interesting is because of his experience with Cystic Fibrosis.  From the moment Bennett was born, we have been talking to Oliver about how bodies work - how some work correctly and some do not.  We regularly talk about Bennett's medicines work in his body to combat damage in Bennett's lungs and his pancreas.  Oliver, our science-lover, seems to particularly embrace opportunities to learn about the body.  We think this helps him feel more confident about the uncertainty that CF brings.



Jello petri-dishes with sprinkle "bacteria".


 Oliver's X-ray cake (found here: http://maxandellie.blogspot.com/2011/11/body-birthday-party.html)
  

Since Oliver's birthday was around Halloween, it was easy to find body-themed candy.


Edible Mouths with teeth made out of apples, peanut butter and marshmellows (found here: http://kidtimes.wordpress.com/2014/10/03/turn-that-frown-upside-down/)


On the topic of teeth, Oliver just lost his first front tooth right before his party. 


DNA pasta





This is one of the sweetest little skeletons I could find!  I was careful not to get gruesome, for Bennett's sake.  Oliver is beginning to enjoy things that are pretend scary.  But Bennett still gets scared of shadows.  So I was glad to find this sweet little skeleton guy (or, as Bennett calls it, "skell-i-on" guy). :)


I found this skull head at CVS in the Halloween section.  It was black and lit up for Halloween so I spray painted it white to look more like one you'd find in the lab.


The upside to having a body birthday party around Halloween was it was easy to find body-themed candy and toys.  The downside to having a party right after Halloween was they sold out of dry ice throughout the entire city right before our party. So, my intention to put dry ice in the beakers for the party ended up not happening.  Kids didn't seem to care.  He liked the food coloring just as well.


I found this neat little website that helps you spell out your name with the elements: http://www.lmntology.com/.








DNA made out of streamers - Oliver is fascinated by DNA, especially because we have talked about how Bennett's CF comes from mutated genes in his DNA.


White chocolate and pretzel bones (found here: http://www.frogsandsnailsandpuppydogtail.com/2012/10/fun-candy-bone-snack-for-kids.html)



Fruit molecules (found here: http://mrsmouthy.wordpress.com/2011/09/27/mad-scientist-birthday-party/)  Literally, Brian was over in the kitchen cutting up fruit and making serious molecule models out of fruit.  I had no idea one could have such fun with fruit, toothpicks and their knowledge of microbiology.


Make a wish!



Oliver's party favors were bone candy, gummi brains and some kind of Halloween gooey thing inside a beaker candy.  


Who can resist chewing in to some gummi brains!? ...especially if you have a little zombie in you! :) 


Happy Birthday to our firstborn snaggled-toothed first-grade 7 year old!  We love you, Ollie-Bear!!