31 March 2011

Bronchitis Update

Bennett's acute bronchitis is doing well. He's completed his antibiotics and seems to be breathing better. He is still wheezing but that should go away in another week. We will continue to do breathing treatments until he is done.  The hope is this doesn't turn into anything more.  I am feeling pretty good about it...for now. Breathing treatments every 6 hours + Vest treatments twice per day + enzymes before feedings + tube feedings + medications (2 in the morning and 6 at night) = how the heck do you do anything else in your life??

The only thing that has recently changed in our routine are the addition of twice daily 30 minute breathing treatments. But each time we change/add to our routine, it throws us out of wack for a few weeks.  When we add something to our schedule, something else always has to go in return.

Breathing treatments are normal for most CFers.  But since Bennett has yet to have any no lung issues (they usually will get them by 2 years of age), we have pretty much been able to hold off on giving those to him.

Having to treat a lung infection such as bronchitis reminds us what we have ahead. And it makes us *incredibly* thankful that we are not required to do inhaled medications right now (except when he's sick).

I literally feel like we are the luckiest people in the world because we get an extra hour of our day to not do treatments. But I am aware that eventually we will join the general CF public in having to do them.

Our bedtime routine (as well as our morning routine) is incredibly long.  Babies and kids require the obligational bath time, teeth brushing time, story time at night.  But add to it Bennett's long list of bedtime routine and it's practically cutting into dinner! 

Thank goodness there are other CF families out there that remind me  But it is a wonder how families do it. 

Nonetheless, it's completely worth it to keep Bennett alive.  So, I will keep focused on the fact that it's ultimately worth it...even if it means it adds several hours to our day.

30 March 2011

...if just for Bennett

{EDIT: Laura and Carrie, thanks for your sweet comments!  Per your suggestion, I added a link to donate to this year's Great Strides on the right side of the blog.  Thank you for caring for Bennett!!}

Since we're about a six weeks or so away from being admitted to the Feeding Clinic, I've turned my attention to working on this year's Great Strides event in Waco.  I hope to do whatever I can before we get admitted.  At that point, I'll be solely focused on Bennett's eating issues.

Our Waco CF Walk is pretty small.  Fortunately, there are very few kiddos with CF in Waco.  Bennett is the youngest of them all.

It has been nerve-wracking to ask companies for sponsorships and friends to come out to support Bennett.  There is always a vulnerability that comes with doing so.  

Each time that I ask, I risk being rejected.  Each time I ask, I feel myself on the verge of tears.  How do I explain to another person the heartache that I feel?  How do I ask for something that seems so small but has the potential to mean so much?

As soon as I found out about the Cystic Fibrosis Foundation's new "Blow Away Cystic Fibrosis" theme (which includes pinwheels), I knew who I ought to inquire about first.  I knew Rachel, owner of Pinwheel Kids, might be receptive to helping us.  She's a fabulous person, a caring mother and an owner of a store for children.  I thought it'd be a perfect match for the CF Walk.

When Rachel responded to my request without hesitation, and then began to roll off ideas of her own, I began to tear up.  I remember thinking, "she's on our team...she gets it...she's gonna help me fight."  It felt so good.

Having one "yes" gave me the confidence to ask another company and then another.  Each time, I call with confidence but have plenty of hidden anxiety inside.  Thankfully, every time I have asked, I have received affirmation of sponsorship with enthusiasm and support.  I have truly felt like God's presence has been with me.

I don't think God cares a ton about CF Walks or sponsorships (although, I do think he cares about what we care about).  But I think what God cares about most, in a situation like this, is my trust in Him. 

I am trusting that if I make efforts to fight for a cure for my child, I will find God at work doing good things.  And I have seen just that.

I have doubted my efforts towards Great Strides.  Thoughts like,"What does this matter?  What if nobody comes?  What if this is a total flop?" have seeped into my head.

Since we are such a small group in Waco (there are about a dozen kids with CF here), trying to put on a CF Walk can be a bit daunting.  Many families have been doing this for years.  This is year #2 for me.  I'm fresh with enthusiasm and ideas.  Other families find themselves preoccupied with their lives and some have long sense lost some of that enthusiasm.

"Why work for something that nobody probably cares about?" I found myself wondering yesterday. 

And then, I heard my heart reply without missing a beat, "Because if I don't do it for Bennett, who will?....If all of this is just for Bennett, it's worth it."

My perspective is him.  My son.  If for no one else.  Even if it's just me, Oliver, Bennett and a few extended family at that little CF Walk.  It's worth it.

It's worth it because it's a day to celebrate the courage Bennett has to fight for his life daily.
It's worth it because it's a day to be with those who support us during this CF journey.

It's worth it because it's a day to recognize that one day CF will be overcome.

The reason I work so hard for the Great Strides Walk is for Bennett.
...So that one day he when he looks at us and says, "Can't you make this all stop?,"  I can look him in the eye and say, "Mom and Dad have done and will continue to do everything we can to save you."  

And believe it or not, I have found something sort of funny happening in this process.  Each time a company volunteers to sponsor the CF Walk...or each time I hear someone watched his video... or each time someone gives to the Cystic Fibrosis Foundation in honor of Bennett...I feel so much less alone.  I truly feel like we are on a team and people are gathering around us.  It's as though little things like sponsorships and money given on behalf of Bennett really does give me hope.

Do I think a sponsorship of a plate of chicken is really going to cure Bennett?  No, but it's an act of someone offering what they have to help my son.

And that is powerful.

God is good and one to be trusted.  And I have seen it repeated in people's care for my son to be healed.

29 March 2011

Advertising Bennett's CF Walk

A few weeks ago, I approached the owner of Waco's only children's boutique Pinwheel Kids to ask if she might be willing to be a sponsor of this year's Cystic Fibrosis Walk.  I was incredibly touched when Rachel, the owner, was not only receptive but was excited to do whatever she could do to help us make this year's walk the best!  Almost immediately, Rachel was coming up with some fabulous unique ideas of ways she can help!

In fact, when we talked, she suggested that I join her both during Saturday's Kids Expo in order to advertise our Great Strides walk.  (See my handmade poster with Bennett's picture on it?) 

The Kids Expo had a great turn out.  Hundreds of parents and children came out to see what local businesses have to offer for kids.

Pinwheel Kids had their table all set up.  They offer premiere parties for kids, classes for kids and parents...

And tons of adorable toys!  This is just a selection of the cute things they offer.

It was so sweet that Pinwheel Kids used their booth to promote our Great Strides Walk.  It was so incredible that so many families had an opportunity to find out about Cystic Fibrosis.

I spent several hours at the Expo passing out flyers about the Walk, which included a small portion of Bennett's story. 

The Expo was alot of fun.  There were alot of vendors.  It was pretty interesting to see that one of the things so many children stood in line for was, none other than...

Facepainting!  Kids love then some facepainting!

Thank you so much Rachel and Sandra for supporting Great Strides and for working to find a cure for Bennett!!

28 March 2011


On Friday, the morning after we gave Bennett his first dose of his appetite stimulant, Brian came in saying Bennett was having a hard time breathing.  He was breathing shallow and seemed to be wheezing. 

I wondered if possibly Bennett had had an allergic reaction to the medication or possibly it was a side effect of the med.  I gave him a breathing treatment and watched him, hoping as the medicine wore off, so would his breathing difficulities.

By 2pm on Friday afternoon, I decided to get it checked out.  I hated to find myself into the weekend worried about Bennett and having no recourse but the ER. 

The Pediatrician decided to give him a chest X-ray to make sure it wasn't pneumonia.  She did not believe his issues had anything to do with the appetite stimulant (which is an old medication that has been around for decades).  Apparently, the GI doctor (who prescribed the medication) also does not believe Bennett's wheezing and shallow breath had anything to do with the medication. 

Bennett's pediatrician believes he has bronchitis.  She gave us another antibiotic to add to his list and sent us home. 

The good thing is Bennett seems to be feeling well.  He has had some fever and a runny nose but overall seems quite well.  He is still wheezing today but has no cough.  The hope is this will subside in the next few days as it is likely that its a virus.

Overall, this is not a Cystic Fibrosis concern.  Normal kids get bugs like this.  But, any lung infection has the potential to turn into a larger infection or open the way for a nastier infection to make its home in Bennett's lungs.

As we went to sleep last night, I warned Brian, "this could be the start of something worse, you know.  We could end up seeing a bad throat culture at some point soon."  He nodded and understood.  We are extremely lucky that Bennett has gone this far without any lung issues.  Our prayer is infection will stay out of Bennett's lungs for even longer.

We have put the appetite stimulant on hold until Bennett is back to being fully well again.  With CF, it's two steps forward, one step back.  It's no surprise we hit our "one step back" with bronchitis.  Hopefully we'll be moving forward again soon!

25 March 2011

Holding A Secret

Each week Brian and I try to get away for a few hours for a date.  Last week consisted of going on a walk on the Baylor campus with a cup of hot chocolate.

It was delightful to be with him.  The weather was beautiful. We knew our children were safely snuggled in their beds.  Bennett continues to be improve by the day.  And, because of this, I'm starting to feel like I'm more balanced and overall more at peace with life.  Brian is feeling relief as the end of his semester is near.  So he is also feeling more balanced.  It was a night when all the world just seemed right.

But as we were walking, I had to share my heart with Brian...something that had been weighing on me.

"Brian, have you ever realized that we know a terrible secret about someone that we can't even tell them if we wanted to?" I asked.

Brian wasn't sure what I was talking about.

I went on.  "It's like we know something horrible about Bennett and his future.  And we have to live with knowing that...and we can't even tell him.  Since he's too small to understand, it's like we have to keep it from him but it completely affects him."

Brian, now understanding what I was trying to communicate, validated my feelings.

"Yeah," he said. "He's a baby.  You can't really tell him anything about anything.  He's blissfully unaware about everything...but that does mean that we carry the burden of what we know about his life...until we share that burden with him one day."

"But, won't it just be awful to have to share with him this secret - this bad news that we've carried all of his life?  One day he's going to learn it himself."

"Sure, but he will go through emerging stages of understanding his disease.  He will slowly learn this information over time..."

I started to change the subject and apologize for seeming to always be so consistantly shocked over where we are with Bennett - where we are with a child with special needs - where we are with a child who faces a lifetime of medical intervention.  We've now known for 18 months.  Why does it feel so fresh and so not-real to me sometimes?

There is never any need to apologize with Brian.  That's why husbands are so wonderful...they need no apology.  They understand.

"Breck, don't forget that, in the same way Bennett's awareness of his situation will be emergent, we are also in our own emerging stages of accepting his diagnosis and what his future holds."

He is so right.  And it was validating to hear.  It's hard to believe I can read a story about another young child's illness and feel completely broken over it...all the while forgetting that my child is in the same or a similar situation.

The video below caught my eye tonight after I followed a local news story about the new Scott and White Children's Hospital in Temple opening this fall.  As much as we consider Cook Children's Hospital our home hospital, we have spent equal amount of time at Scott and White Children's in Temple.

This song, entitled "Help Us Live," was written in order to encourage the community to give financially to the new hospital - a hospital from which my son will likely benefit.  It brought tears to my eyes.

It's hard to watch a video like this and acknowledge my child could have very well been featured in it...and yet, as I teared up, I remembered Brian words about us being in our own emerging stages of accepting Bennett's situation.

Emerging is the slow coming forth and noticing of something.  It seems so strange that I can know something for a fact but still have a part that is still in a sort of emerging awareness.

24 March 2011

New Appetite Stimulant

Yesterday was our wonderful visit with Bennett's new GI doctor, Dr J today.  He was very encouraging and reassuring.  We have one more month on a low dose of Vancomycin antibiotic to prevent the return of his C.Diff.  After that, we will wait and see if his C.Diff. comes back.  Dr. J believes it won't.  I'm hoping he's right.

We also talked about the success we've seen with Bennett's eating.  Dr. J suggested using an appetite stimulant.  I was hesitant at first since the CF clinic told me just last week they don't even consider using an appetite stimulant until after the age of 2.  But Dr. J reassured me that he uses it all the time and hasn't had a problem with it.  After research, I have come to conclude it's worth a try.

I pulled from multiple online resources of CF parents who have experience with this medication.  It seems that the medication does not have alot of side effects.  Lastly, I had an opportunity to speak with the Baylor Feeding Clinic last night.  The lady I spoke with said she agreed with Dr. J's suggestion that we try the appetite stimulant to maximize any success that Bennett might gain while at the Feeding Clinic.

So, we will begin tonight giving Bennett a new medication right before bed.  The main side effect is sleepiness.  So, Bennett will be able to sleep off that side effect of the medication throughout the night and - hopefully - will wake up hungry.

I'm pretty excited about seeing what this medication does for him.  Some parents say it does wonders!  Some say it did nothing for their children.  We shall see in the next week.

On a side note...
Bennett delighted in several mini white-powdered donuts yesterday.  I've never seen him finish eating anything before (never has he finished a jar of babyfood, a complete sandwhich or plate of food).  So, to see him eat an entire mini-white donut yesterday.  I wondered last night if watching Bennett eat will ever become mundane.  I'm sure eventually it will.  But for now, it's as exciting as watching my child walk for the first time.   So exciting!

23 March 2011

Vest Time + Springtime = ?

What happens when one child wants to run and plan in the driveway outside after dinner...but another child needs his vest treatment before bed?


We just do treatments outside on the driveway!

Daddy is especially good at entertaining the "trapped" one for 20 minutes.  But the truth is, we all enjoy the beautiful evening Texas-spring weather, whether we're off playing in the yard or just sitting outside.  Vest time is always better outdoors. 

22 March 2011

Reasons for a Late Post...

Well, this is a late post today. There are a variety of reasons...

1.) We have begun seriously potty-training Oliver.  So, every 30 minutes during the day, the microwave timer is going off and I'm busy helping Oliver with his pants. :)  He's doing a really fabulous job.  In three days, he's had only 5 mistakes, 4 of them on the first day.   I have dragged my feet on this one...not too excited or confident on how to potty-train.  But it turns out that it's not too bad.  And it'll be well worth it in the end!

2.) We had Occupational and Speech Therapy this morning, like we do every Tuesday and Thursday morning.   However, today, we discussed my desire to cut back therapy. Bennett is doing phenomenal with his eating and, overall health-wise, is doing beautifully. CF is a progressive disease so I am quite aware that our hardest times are yet to come.  I am equally aware of the need to be as less invasive as possible during the good times. This feels like a "good time" so we've decided to cut out Occupational Therapy and cut down Speech Therapy to once per week (maybe even 2X per month). This will allow Bennett's issues to become less of our focus and will give us back about two hours a week of family time. Our plans to go to the Baylor Feeding Clinic in several months may impact how much we do/do not need Occupational/Speech Therapy. So, for now, we'll just put the therapies on hold/cut them down until we return from our hospitalization.

3.) I have maxed out my laptop's harddrive with pictures. And I have almost used us my entire free space on Picasa Web due to pictures. We're facing either buying a new harddrive for my addiction our family's pictures, or buying online space.  I feel like there is really no good alternative for protecting digital photographs...and as rapidly as I taking pictures....we're gonna have to figure out something soon.  Brian promises to help me correct this problem this week.  I look forward to taking/downloading more pictures soon.  :)

21 March 2011

Pizza and Cupcakes

On Friday night, our little family of four attended the birthday of one of Oliver's best buddies.

The boys were so sweet sitting on this step.  Bennett really wanted me to open those bubbles.  And Oliver was modeling his new cowboy hat he received at the party.  It was very fun to celebrate our little friend who turned four!

But little did the fellow party-goers know, but we were having a mini-celebration of our own.  Bennett ate at least 6 bites of pizza...and about the same number of bites of cupcake!  That is quite an accomplishment for a child who, only two months ago, would hardly eat anything.

(Sorry for the "see-food" picture but it's so funny to me.)  Whenever Bennett wants more of something, I ask him, "show me what's in your mouth."  Sometimes he will chew on a bite of something for a longer-than-normal time (typical of children with feeding issues) and, inadvertently, I'll end up giving him too many bites for him to chew at once.  Nonetheless, this is one of my favorite things...watching Bennett show me he wants more to eat!   I cannot express how thrilled about his enjoying pizza and cake.  During these moments of feeding him cupcake, I realized a wish deep within me wish is that, when it becomes his birthday, I hope that he'll get to enjoy his cake too.

P.S. Would you believe that after Bennett ate so well this evening, I actually forgot to give him his enzymes?!?  I was so focused on getting him to eat that I didn't even think about the fact that the child has to have enzymes, otherwise he won't absorb any of the nutrition or good fats from the food.  Oh well!  One thing at a time... :)

17 March 2011

Today's Appointment

{EDIT: I love this link Lydia left under her comment to this post. I decided to post it for all see. This is a youtube video by Josh, a great guy who has CF and who uses his puppet friend to make kids (of all ages) laugh.  The online CF community has particularly fallen in love with Josh and his videos because of what it means to kids with CF.  It's so wonderful to watch a video that seems to be made *just* for them.  Thanks, Josh, for the dance.  Thanks, Lydia, for bringing it to my attention.}

The first thing we do at our CF appointments is get Bennett weighed.  Thank goodness for that!

As soon as the nurse announced Bennett's weight this morning, I knew our appointment wasn't going to be as horrible as I had anticipated.  In fact, it turns out the appointment went pretty good!

Bennett weighs 23lbs and 11oz.  That isn't too's in the 25th percentile and very close to where he was last month during our last visit with the CF doctor. 

Both the Dietician and doctor were very happy to find out Bennett growing right on his curve.  They had apparently thought he had lost weight when I called earlier this week to request to cancel today's appointment. This is because out of the 3 scales we have at our house, we didn't know how much Bennett weighed.  One scale read "22 lbs", another read "24 lbs" and another something different.

Knowing that Bennett weighs almost 24 lbs is very relieving!  This tells us that Bennett is growing normally and may even be eating enough calories orally to make up for the tube feeding that we have taken away in order to increase his hunger.  This is something we have yet to fully know is true.  We have been changing his feeds alot recently so it's important that we try to keep everything as consistent as possible to confirm he really is eating enough orally to grow.

So, our plan is to continue with what we're doing...
* Morning Tube/Pump Feed, 6.5 ounces of formula
* Lunch Tube/Pump Feed, 6.5 ounces of formula
* No Dinner Tube/Pump Feed (Offer oral opportunities instead)
* Night Continuous Tube/Pump Feed, 19.5 ounces of formula

The only two things we have decided to add (as of today) to do are:
1.) Have Bennett weighed every two weeks at the Pediatricians office
2.) Offer Bennett 3 additional ounces of water daily (either by mouth or through the g-tube)

We will continue with our plan of being admitted into the Baylor Feeding Clinic later this Spring.

I was really nervous about today's appointment.  I had alot of guilt I was struggling not to hold on to.  I had really hoped my desire to cut down Bennett's tube feeds in order to allow Bennett to eat more by mouth hadn't caused him trouble.  So, it was really fantastic to feel the team agreed that what we are doing is good and may very well be working.

I am so thankful for Bennett's prayer warriors who keep him and our family in their hearts and prayers.  I have recently felt God very near and have chosen to fall safely into his arms, even in my uncertainty of what the future holds.

Good days, good visits, healthy weights and happy doctors are all blessings I am thankful for this St. Patrick's Day!  Aye, we're lucky today!  We found our gold at the end of the rainbow!  We're celebrating 23 lbs and 11oz!!

16 March 2011

Tomorrow's Appointment

I won't lie. I don't want to go to Bennett's CF appointment tomorrow.

I had really hoped we would be given a pass on tomorrow's appointment.

Last month, Bennett's CF doctor suggested that we make an appointment one month out as she was concerned about Bennett's lack of weight gain. But, as a condolence, she offered us the option to miss the appointment as long as Bennett's weight went up.

I called Tuesday to say, his weight was not up.  In fact, it seems like it is where it was 8 weeks ago.  He weighs about 23 lbs.  Then, he was in the 30th percentile.  Now, if this is actually how much he weighs, he will have dropped close to the 15th percentile.

This is a big deal because studies show that the closer a CFer's weight is to the 50th percentile, the better their lung function and ultimately their life expectancy.  In addition, children need to gain weight appropriately so that their brain is not deprived of the necessarily fats and nutrition needed to grow.  When Bennett doesn't gain weight, it an affect the quality of his life as well as his very life itself.

It is certainly disconcerting.

In the last two days, I have been pretty anxious about tomorrow's appointment.  I have gone through all the scenarios of why this might be happening, how I could have stopped it, what I could have-should have-would have done to correct this issue.

But one peace of wisdom came my way during a talk with my father about my anxieties about tomorrow's appointment.

He reassured me that I am a good mother, who wants to be for Bennett, and who makes good decisions on behalf of my son.  And he reminded me, "it's the disease that causes him to lose weight, not you."

It was a freeing statement.  It was a statement that put Bennett's issues into perspective.

As I daily grapple with feelings of guilt (is there something I could have done or should be doing to help improve my son's health?), my father reminded me that I am not in control of this disease.

"Sometimes, Breck," he said, "even when you do everything right, the outcome is not what you want.  This is a chronic disease and it is very difficult to predict and control."

Statements like these have so much power to offer relief for parents in situations like this.  It is so easy, as a parent, to believe that we are not only responsible for our children but have the ability to save our children.  The truth is, I am a part of the team that is fighting to save Bennett.  But I do not single-handedly save my child nor cause my child harm.

All that I can do is to continue to strive to balance Bennett's health - emotional, spiritual and physical health - in tandem with the rest of life.  The outcome is in God's hands.

Tomorrow's appointment will be an effort for the doctor and Brian and I to work together to find a way to keep Bennett growing.  Whether Bennett's life is extended or shortened ultimately is not up to me.  We are fighting CF.  And unfortunately, CF is fighting against us.

Crashing Waves of Grief

Grief is a funny sort of thing.   It comes and goes like the ebb and flow of the ocean...rising higher at times, loudly presenting itself for all to hear.  And yet, at other times, it seems to move more slowly and quietly, as if to blend into the background noise.

But make no mistake about it, grief can be there long after you have thought it left.

This is what I have most recently experienced.  I have mentioned before that it is often at the times when things seems to be least stressful, that I find myself feeling sadness, loss and disappointment.  Even at times when I am most pleased with the world, these feelings can creep in.

I think they are actually very healthy.  I believe that, at times when life is the least stressful, the brain will actually unconsciously offer the heart room to experience emotions and ideas that have been buried deeper within and have yet to be explored.

So, I share my grief as being a positive thing, although grief never feels good.

Leaving my sweet ones for an extended time, recent conversations about the potential of future children, Bennett's sudden lack of appetite, an upcoming CF clinic appointment this week and my anxiety about Bennett being admitted to the Baylor Feeding clinic in a few months seem to have just recently clashed to offer a perfect symphony of fears, anxieties, tears and pain.

It can feel so frustrating to feel such deep but often familiar feelings when it seems like nothing necessarily "caused" it.  But I am thankful for an understanding husband, sensitive friends and a loving family who do not require me to have an explanation for my feelings.  Instead, they just listen, rub my back and offer their help, should I need it.

I feel very supported, yet sometimes lonely.  I feel very understood, yet sometimes unknown.  I feel very frustrated, yet having options.  I feel very renewed, yet also tired.  I feel hopeful, yet a bit disappointed.

My previous experiences with counseling have given me the insight to realize that all feelings (both positive and negative) are meaningful.  I benefit most from listening to those feelings and emotions and giving words to them.

I have spent the last few days doing just that.  I do not believe that I will always feel this way - sadness over Bennett's diagnosis and continued difficulties.  But for now I do.

And that's ok.  God is a good god.  He wastes nothing.  He sees my tears.  And he is a dynamic God who draws near to those in pain.

Crying helps.  (Those coughing cries are the best.

Because after a good cry, I always feel better.  And, despite my fears as I begin to cry, the tears do not - and cannot - go on forever.

Tears mean something matters.  Bennett's health, more children and a life without hospital admissions all matter.

Sometimes...,all that is needed is just the validation that life isn't supposed to be this way...  

I am just glad to live in the confidence, it won't always be this way, either.

"I have told you these things, so that in me you may have peace.  In this world you will have trouble. But take heart! I have overcome the world."  John 16:33

14 March 2011

I didn't forget...

I didn't forget to post yesterday. I just took a short break to be with my husband this weekend (which included Monday as well).

Brian and I took some much needed time out to be away from our boys and just fall in love with each other again.  And, as a bonus, we spent some time with a few of our closest friends.

As iron sharpens iron, so one man sharpens another.  Proverbs 27:17 

There is something so wonderful about bearing your soul to friends who know you well.  And there is equally something wonderful about spending time with your husband without all of life's distractions.

I have never more appreciated the idea of a convent or sabbatical.  Each of us, at some time or another, need a break from refocus and gain new energy to persevere.

While we missed them, the boys loved being with family while we are gone.  We are so thankful for family who is willing to sacrifice to care for them on our behalf.

I will write more about my own breakdown over Bennett's health sometime soon as I continue to process lingering grief over his diagnosis (that's the thing about chronic illnesses, the grief over them can feel a bit chronic, as well). 

But for now, it's nice to simply share my thankfulness for healing deep friendships and loving husbands.

11 March 2011

Slowing Time

One thing I've recently realized is children slow time.  They cannot be hurried.  And can seem ever ticking to their own metronome.

Trying to hurry Oliver to put his seatbelt on seems only to delay the process.  And no matter how much I call and cheer for Bennett to walk to me for a diaper change, he will not walk any faster than he's determined is appropriate.  Why run or hurry?  What's the rush, my children look to me to answer.

Children have little sense of time.

I have been reading my new favorite book called "Ten Thousand Gifts" by Ann Voskamp.  She writes about simplicity and taking time to notice the everyday miracles God gives us.  This, along with many of the book's themes, has really hit a chord with me recently.  It's probably because, in the midst of the monotony of diapers, feedings and naps, I can long for the faster paced world outside my door.

Still, I have begun to recognize the gift of the mundane.  It is during the eternity it takes for my three year old to put on his seatbelt ("I do it myself, Momma!") that I notice an adorable older couple cross the parking lot hand in hand and I whisper to myself a wish that my husband and I might one day do that too.

It is during Bennett's second 20 minute Chest Therapy Vest machine cycle that I realize his new love for playing with puzzles.

It is pushing the boys on the swingset outside that I notice our neighbor emerge from his house, for what seems like the first time since winter, and we wave hello.

"Simplicity is ultimately a matter of focus," writes Voskamp.  Similar to the stomach that takes time to realize it is full, "how long does it take your soul to realize that you life is full?  The slower the living, the greater the sense of fullness and satisfaction."

Children, especially my children, remind me that there is no hurry in life.  There is little to be gained by hurrying but much more to be gained in experiencing life in the present.

I want to remember that little feet, snotty noses, dirty diapers and unlimited refills on sippy cups are not things that keep me from life, but they are speed bumps that remind me to experience life more fully.

"We are merely moving shadows, and all our busy rushing, ends in nothing." Psalm 39:6

10 March 2011

A Boy Who Loves To Swing

The boys' grandparents went together to buy the boys a swingset for Christmas.  We were able to finally get it purchased and put up a few weeks ago.  The weather in Waco has been fickle with really warm temperatures followed by cooler temperatures.  But as much as we have been able, we have gone outside to enjoy the swingset.

Oliver enjoys doing lots of things outside....

But Bennett is a single-minded man.  He wants one thing and one thing only: the swing.

This kid could swing all day, if we'd push him that long.  Who thought it was a good idea to give up those battery powered baby swings once kids reached 20 lbs?  I could use a motorized swing to keep this kid happy!

09 March 2011

Wordless Wednesday

This is what happens when naptime and playtime collide...

08 March 2011

Happy Fat Tuesday!

 It's Mardi Gras in our house!  Originally from Louisiana, I love being able to celebrate traditional Mardi Gras with the boys.  We wear beads, eat Red, Beans and Rice and King cake!

This is Bennett's new silly smile when we say, "Cheese!"  It's a combination of him squinting his eyes and opening his mouth.  It has us cracking up.

Purple, Green and Gold dazzle our house.

There are no parades in Central Texas (that we know of) so we haven't been able to show the boys that yet.  But for now, it's fun to teach the boys our Louisiana heritage and celebrate the beginning of the Easter season!

07 March 2011

Thank You for Giving

For where your treasure is, there your heart will be also.
Matthew 6:21

This was the Scripture that yesterday’s sermon was wrapped around. Our pastor spoke about on money and reminded us that it is how we spend money that demonstrates what we value.

I came to church yesterday in an already mediatative mood. Within only 48 hours of Bennett’s video being put up on Facebook before more than 300 dollars had been given to the Cystic Fibrosis Foundation in honor of Bennett. I couldn’t believe the kindness!

Yesterday’s sermon ended with a video from Sarah McGlaughlin that is pretty poignant about the use of money:

During one of the scenes towards the end, there is a little African boy that is hungry but whose body cannot absorb the food. The video demonstrates how important it is to fund medical organizations who can help him.

I saw Bennett in that little boy. It struck me that my son is in a similar position. He wants to live but he will eventually succumb to a disease that is slowly hijacking his body despite anyone’s efforts. And yet, money is being given for research to find a cure to save him.

I couldn’t help but tear up when I was reminded, during that scene, of the people who have given this year and last year on behalf of Bennett. Just this year alone, the people who have given are those with big hearts – a neighbor who moved in just a couple of months ago, far away sorority sisters who have never even met Bennett, a friend of a friend who I have met only once and my camp supervisor who I haven’t seen since high school.

For where your treasure is, there your heart will be also. This has played in my heart over and over in the last two days. As I have seen the overwhelming response so far, I have seen people’s treasure, and as a result it has shown me their heart.

Giving money to anything means sacrificing something else in the process. And I have been so humbled by those who have opened their wallets to give on behalf of Bennett.

In fact, it is a blessing I am learning how to accept. They say it’s better to give than receive. And the interesting part of receiving is the feeling of unworthiness.

How can I ever repay these people who have given to save my son?” is the thought that often rises up in my heart when I find out someone has given.

Each time, I hear God say, “a gift is not meant to be repaid, it is meant to be received with thanksgiving. Accept it as a blessing.”

And, each time, my heart curls its fingers around my open palm and whispers thank you.  Thank you for the blessing of hope you give my family. Thank you for helping us save Bennett.

05 March 2011

Great Strides 2011

Since we put up Bennett's video online, we've been surprised by the response of people who have asked to how they can donate to the Cystic Fibrosis Foundation in honor of Bennett.  (I will post more on this later, but I cannot express the humbleness I feel with those of you who have already given.  Brian and I have both been so touched.)

For those who have asked, you can donate in honor of Bennett by going here:

If you're local and want to walk with us on May 21 to celebrate Bennett, click here to sign up:

How incredible it feels to have others want so badly to save our son,

04 March 2011

Drum Roll Please...

Here it is...the world debut of Bennett's 2011 Great Strides video.  Hope you like it!

To watch Bennett's last year's video, go here:

03 March 2011

Chicken Nugget

Bennett is eating so well!  Yesterday, I couldn't help but bring out my camera when I saw Bennett start chowing down on one of Oliver's McDonald's chicken nuggets!

It was so fun to see him eat so well.  He needed no coaxing, no incentives, no praise.  He was hungry and he just ate!

We weighed Bennett yesterday to make sure he's not losing weight.  It seems he is gaining just a small bit.  This is still good news.  We have decided to begin to work him up from 20 calorie formula to 30 calorie formula ever so slightly.

As long as we continue to see smiles, we will know he is tolerating these changes just fine.  We are hoping to give him higher calorie formula to make up for the small amounts of food he is still not able to get in.  But in the next two weeks, we will also try to drop another feed and see what happens.

We've decided to begin working on new strategies with the speech and occupational therapists.  I told them that I find that Bennett eats more when he is not being pressured into eating.  So, we are going to stop focusing on food and start focusing on fine motor skills and sucking through a straw.

I will have to get a video of Bennett dancing when he eats.  He is so funny when he dances around.  It's obvious that he enjoys eating.