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When the car is empty...

Saturday, September 3, 2016

I hear these words a lot: "I don't know how you do it."

They are usually coming from well-meaning friends, sometimes from strangers, referring to the challenges of caring for a chronically ill child.

Usually I smile and admit I don't know how I do it either.  I just get up and do what has to be done to keep Bennett well.

But yesterday, for one of the first times, I agreed with them: 

I don't know how I can do it.

Not one more time. Not now.  I just can't.

For weeks, we have been gearing up for Thursday, Bennett's 5th sigmoid dilation and his 7th hospitalization this year.  The plan: stop his solid foods first thing Wednesday morning, give lots of Miralax and an enema before bed Wednesday night, stop fluids on Thursday morning, drive to Dallas shortly afterwards, undergo anesthesia for a 1:30 pm procedure and spend a night in the hospital to monitor.

I had a really sweet friend reach out to me a few nights ago via Facebook with a sort of "welfare check."  She hadn't heard much on the blog and wanted to make sure things were ok.

I really appreciated her checking on me.  Everything is very much ok.  Kids are thriving in school. Now that Avonlea is getting bigger, I'm being able to pursue some new opportunities.

My silence on the blog, however, has been somewhat by design.

So far this year, Bennett's issues with CF have been really challenging. In January, he had a portion of his colon removed.  Nine months later, we are still undergoing procedures to address an intestinal stricture that may have been a complication from the January procedure.

At times, the emotional "noise" that has come from all of that has been very loud.

That's why I've chosen to be quiet on the blog during the non-hospital times.  I've needed to turn my attention to everything else in life - anything else in life - other than CF.

As I began getting calls from the hospital in preparation for Bennett's procedure next week, I began realizing my anxiety was increasing.  I was feeling more and more overwhelmed.   Coordinate childcare, coordinate missing school, coordinate diet, coordinate pre-op appointment, coordinate needed medications...

I began running the procedure through my head.  "What about this?"  "What about that?"

I could tell that I was feeling like I'm running on fumes.  I began to share with Brian, a close friend, my mom and my therapist that I was afraid I simply might not be able to do it next week.

Each of them responded to my concerns with validation and support.

What complicates this upcoming procedure is that the colon prep is more intense than usual...and that the success of the procedure is still a bit unknown.

"Is it worth it?" I keep wondering.  "Will it even matter?  All that we have to go through - will it matter in the end??"  We think this next time, this last of this batch of dilations, should be beneficial.  But we still don't know whether or not it's going to last for the long-term.  And we still don't know whether surgery is still in his future.  Only time and a few more procedures will tell.

As I began talking to the hospital pre-op nurses over the last few days about our upcoming procedure, I recognized that I am not going into this next procedure with the amount of energy, readiness and confidence that I need to adequately support Bennett...

In moments when I need to be fully engaged, I want to be unengaged.  In moments when I need to be supportive of the process, I'm looking for ways to make the process easier on us.  In moments when I need to be strong for Bennett, I can't find my strength.

I shared my feelings with my therapist on Friday: "I don't think I can do this next procedure. I'm running on fumes.  I'm afraid if something goes wrong with the procedure, I will be on empty and have nothing else to give.  I'm afraid that's not what's best for Bennett."

My therapist listened intently and then said, "I've walked with you through a lot of Bennett's challenges over the years.  It sounds like this is not a good time to do the procedure.  You must remember that Bennett depends on you.  He doesn't have his own "car" - you carry him in yours.  If your "car" is on empty, then Bennett goes no where."

Her validation was important.  I knew deep inside I didn't want to do the procedure next week.  I knew I didn't feel like I was emotionally ready.  But how could I cancel on Bennett?  What would be the repercussions?

Brian agreed that this procedure is not an emergency.  We want to improve his quality of life.  But, all things considered, he's doing well  He hasn't been sick in a long time.  He's happy.  His teachers have accommodated at school for his bathroom issues.  He can wait.

So, what's my problem?  Why not just call and cancel?  I expressed my concerns during my therapy session, one of my favorite designated places to process my internal thoughts externally.

"It sounds like you are trying to take care of the doctors...that you are really concerned with hurting Bennett's physicians' feelings," my therapist reflected for me.

I acknowledged she was right.  Although, I thought postponing the procedure was the right thing for our family and the right thing for Bennett (heaven forbid, the kid just needs a break), I couldn't get past the issue that my postponing the procedure would be a bother to Bennett's doctor, for whom I have the greatest respect and confidence.

My therapist reminded me that Bennett's CF team is there to help us, not the other way around.  They just want to help Bennett feel better and live life as fully as possible.

As much as I identify myself as being a patient advocate at times, I find it interesting to be so afraid to postpone Bennett's procedure for fear of being seen as non-compliant.  I want Bennett's doctors to take good care of him so we try to be respectful of their time and efforts.  But, my therapist reminded me, that doesn't mean we have to undergo a procedure we aren't ready to undergo.

Throughout our conversation, I was reminded in therapy the power I have as Bennett's mother.  There are times when it's ok to say, "stop."  It's ok to say, "we need to breathe."

We need to go forward only when we are all feeling ready.  It wouldn't be in the best interest of anyone for a mama's heart not be ready.  I am Bennett's advocate.  When I can't do it, he can't do it.

Yesterday afternoon, I penned an email to Bennett's doctor.  It felt empowering to write.  So often, it feels like CF is in control.  It felt good to remind myself that it is not.

But what really meant a lot to me is hearing back from my doctor not too long after I sent the email with the words, "No problem.  I understand.  Let me know when you are ready to proceed..."

My doctor didn't need to write those two words: "I understand."  But they felt really good to hear.

CF doesn't care.  CF doesn't understand.  But humans do.  And Bennett's doctors are humans.  They get it.

I'm human too.

"I don't know how you do it," people say.

"Sometimes...I simply don't," I will now respond.

First Day of School 2016

Wednesday, August 17, 2016

Rainy weather couldn't keep us from our annual first day of school pictures this year!  We just moved them to the porch!

This school year, Oliver is in 3rd grade.  Bennett is in 1st grade.  And Avonlea is in the 3-6 year old class.

This year's picture looks a little different than previous years (click here to see: 2011, 2012, 2013, 2014 and 2015) because nobody is wearing uniforms.  

This summer, Brian and I made the difficult decision to move our littlest kids to a new school.

Last Fall, Brian and I moved Oliver to a non-traditional school environment due to concerns he was not thriving in the traditional school model.  It didn't take long for us to recognize that the Montessori school environment is a great fit for Oliver's 2e learning needs.

While we were so happy last year to have all three kids' needs being met between two great schools, it became clear to Brian and me this Spring that, for our family's sanity sake, we really need all three children in the same school. 

Brian and I thought about, talked about and prayed about what to do.  It wasn't even clear until a week or so before school began, we learned that there was a spot open for Avonlea and Bennett to attend Oliver's school.

Bennett's previous school community (teachers, students and parents) have been nothing but amazing so it's made leaving hard.  Bennett has personally felt tremendous love and support from his school and friends so he feels very conflicted with leaving.  

But one consoling factor to Bennett is that, at this new school, Oliver and Bennett will get to be in the same class with each other every day.

Montessori schools traditionally group children by mixed age levels, rather than by one grade level.  The thought is that heterogeneous ages in one class encourages cross-age-group learning and independence.  

For example, Avonlea will be the youngest in her class this year of children ages 3-6.  Oliver and Bennett will be in the same class of 1st, 2nd and 3rd graders.

There was some worry at first as to whether it would be beneficial to the boys to have them in the same class.  Would Oliver, for example, be more worried about his brother now that they were in the same class, rather than if they weren't? 

The school staff and Brian and I talked and agreed that Oliver already worries about his brother's welfare as it is.  Having Bennett with him there every day might actually help Oliver to worry about his brother less.  Now, Oliver can see for himself that Bennett is doing well.  

Not all siblings are invited to be in the same class in Montessori schools.  Sometimes, sibling sets need to be separated during the school day.  But everyone agrees that Oliver and Bennett are very tender towards each other, get along great and will likely be very helpful for each other.  Oliver can be supportive of Bennett's unique experience as a first grader with cystic fibrosis...and Bennett may highlight for Oliver ways he's capable when he might otherwise not believe he is  

This is the picture Avonlea's teacher sent me today of her hard at work.  The picture shows Avonlea using a spoon to move some acorns from one bowl to the other (fine motor skills work).  

Avonlea cracked Brian and I up today.  We kept asking her if she was looking forward to going to her new school.  She had just met her teacher the day before so we had hoped she was warmed up enough to gain some excitement.  Her reply was very confidently: "I'm not going to a new school."  

Brian told her this morning, "I hope you have a good day at school today" to which Avonlea replied, "I don't want to go to a new school. I don't want a new teacher."  

As we pulled into the parking lot, Avonlea explained that we would be dropping off her brothers but that she would be "going home and getting something to eat."  

She said goodbye to Bennett and did walk down to her classroom with me.  But she continued to stay outside the door and explaining matter of factly that she wasn't going in.

...that was until she saw her teacher who she had met a few days before...and until she saw the interesting "toys" (Montessori calls them "works") on the shelves.  

Then, like a bug walking into a light zapper, she went right straight into that classroom without a moments hesitation.  She happily gathered the materials most interesting to her and sat down at the table.  

I actually had to call her name to get her attention to wave goodbye to her.  She did nothing more than look up and say, "bye!"

So much for "not going to a new school!" Ha!

Sigmoidoscopy with Dilation - Numero Quatro

Friday, August 12, 2016

Yesterday morning was our fourth sigmoidoscopy with dilation procedure to address Bennett's gastroinestinal stricture.  Bennett did well and the procedure went better as expected.  

The GI doctor was able to open the stricture to 15mm (it was 6mm when we started) and seems to think some of the inflammation tissue may have "popped" or given way.  

This is an improvement from our last surgery where the doctor was concerned it was not opening up enough and I was reporting Bennett's symptoms in frequency and urge to go to the bathroom were not improved.  However, this new improvement has given us more confidence to steer away from surgery for a bit longer.

There's such a part of me that would prefer surgery, just so we can have one procedure and get it done.  But, complications surgery may be the reason we are hear in the first place.  So, it's best that we hold off putting Bennett back under surgery for as long as possible.

The plan, for now, is to do another procedure in 3-4 weeks. The doctor hopes that this next she can open his stricture to 18mm and to inject steriods in the area to manipulate the stricture inflammation to go down.  Then, we will wait 4-5 months and reevaluate.

Our time at the hospital has gone well.  Bennett was a little combatitive and winey when we first arrived at the hospital.  I recognized he was feel anxiety and anger about having to be here. I was too, frankly. So, I stopped him and said, "Bennett, I don't want to be here either.  This is terrible.  I hate every bit of it.  But I need you to be kind to me and I need to be kind to you.  Can we be nice to each other today?"  Bennett seemed to respond well, almost like my having acknowledged his feelings was enough to let it go.  I had to let my frustrations go too.  I could tell how stressed and irritated I was feeling when I was packing the night before and talking to Brian.  In fact, Bennett often throws his frustrations on me.  And I throw them on Brian.  I'm thankful each of us are willing to be gracious with each other during these times.  Bennett enjoyed his new toy again.  I really appreciated a sweet nurses's disposition.  Our morning turned around and we were able to be present in the moment.

Things started going even better when Daddy arrived at the hospital.  Childcare issues meant Brian had to arrive late and leave early.  But it always helps to have another adult in the mix.  There's always someone to talk to the doctor and someone to talk to the child.  There's always someone to stay with the patient and someone to run to the cafeteria.  There's someone to help calm the other adult.  It just helps having Daddy there.

Bennett woke up from his procedure ok but seemed he may have been hurting.  In recovery, I asked if the nurse could give him tylenol.  Bennett needed to go to the bathroom so Brian and I took him.  When we got back, the nurse had fentanyl to give him.  I knew it was a strong med but I didn't think much of it until we couldn't wake him up a short bit later.  The fentayl is a great pain reliever but it's also a sedative.  So, Bennett's waking up process took considerably longer this time.  Bennett was very loopy for a while which was quite humorous to us.

Our hospital stay has been good. This time, I printed out a paper of "requests" to give to the doctor who was admitting us - requests like "please give mom permission to do respiratory treatments" and "please make pancreatic enzyme medicine PRN (to give as needed)."  These are small requests but if they aren't in the chart, they can result in frustrations between myself and the staff.  Nurses and therapists have to play by the rules very carefully.  So, it's important to set the rules up correctly.  And to do so, it's important to have buy-in from the decision-maker, like an admitting doctor.

Thank you to our friend, Amy Van Vranken, Executive Director of the Cystic Fibrosis Chapter in Dallas for sending Bennett this "epic balloon" (as he calls it) and little set of build-a-robot toys. It was a super fun treat to receive. ❤️

One of the greatest disappointments about our next procedure (other than its number 5) is that Bennett is going to have to have a colonoscopy prep to prepare for it. That means eating only clear liquids for 24 hours and then having a full colon cleanout (which includes loads of Miralax and lots of potty time).  

I cannot even express the knot I already have in my stomach about this.  I know the doctor is only wanting to be able to be the most successful she can by requesting that we prep Bennett appropriately.  She feels badly about it too. But it doesn't change that I am super disappointed that we will have to make Bennett go through this kind of prep again.

Our procedure isn't until September so there's no sense in fretting about it now.  Once we get discharged (hopefully in another hour), we will head home and focus on something much more fun: Bennett's first day of 1st grade next week.  Pictures to come. :)

Ballgames for Bennett

Tuesday, August 9, 2016

For the past 3 years, Bennett has been named the honoree of the Annual Sonny Rose Memorial Softball Tournament in my hometown of Minden, Louisiana.  This year was a special year because it was the first time where our family could attend the tournament in person, which we were thrilled to be able to do!  

My friend Casey, in red, who I have been friends with since high school, reached out to me several years ago when he learned that our son had cystic fibrosis.  Having tragically lost his own brother, Casey explained he wanted to help us find a cure for Bennett so Oliver would never have to experience that kind of pain.  Casey has worked tirelessly since then to help us raise money for the CF Foundation in honor of Bennett ever since.

This year's tournament was it's 16th year and biggest ever with 33 softball teams and 8 wiffleball teams.  I understood it was a softball tournament but what I didn't realize, until I arrived in person, was just how involved it was to put on nor did I know how passionate the people were who played in it!!  

There were 18 coed teams, 15 men's and 8 wiffleball teams.  Although there were a lot of local players, some teams had come all the way from Texas and Mississippi!  The tournament began at 8AM and lasted until 3AM.  

YES!  Three o'clock in the morning!!

This is a picture of Casey's team, which was affectionately named, "In it for Bennett."  This crew won 2nd place in the Coed Division.

First place of the Mens Division went to team "Smash It" (top).  Second place went to "LA Hustle" (bottom).

See the boy in this picture?  That's Bennett.  Ok, look beyond him.  See the guy in the blue shirt?  That man spent all day outside in the direct sunlight and 100 degree heat as a referee for the softball tournament.  At the end of the day, when Casey and his mother tried to pay the man for his work, the man and his wife refused to take the money.  Instead, they said: "donate it to Bennett."

I came upon those words in the conversation between the man's wife and Casey's mom when I re-entered the concession stand where I had been working and where they were speaking.  I was grateful I overheard their conversation because I was given the opportunity to say thank you to this woman in person.  It was meaningful to be able to do so since I had already recognized that so many people I didn't know had graciously given and were currently giving of their time, money and energy to make this weekend successful for the benefit of my son - people I didn't know, would likely never meet and never be able to adequately thank.      

One such crew I never fully had a chance to thank were these little guys and their mothers who were sitting behind the batters box while our family (and a few sweet area volunteers) played a round of wiffleball in the Wiffleball Tournament.

I didn't have anyone to watch Avonlea while were were infield so I brought her some toys, put her on the bench in the dugout and told her to "stay put."  That worked for all of 10 seconds since she's 3 years old, so I was much relieved when I heard a sweet motherly voice from behind me ask, "can I go get your daughter and have her come sit underneath the shaded tent with us?"

I was so appreciative of the kindness of a stranger, one whom I inherently trusted (and later learned I actually knew).  I hated having to leave Avonlea in the dugout but I didn't know what else to do for her while we played.  In this mother's arms, Avonlea was able to sit behind homeplate and the chain-linked fence to watch our game while she, too, was being watched.

The game lasted only 20 minutes.  But I was proud of Bennett and Oliver for trying to play wiffleball, especially considering the 100 degree heat was intense. At one point, I yelled out to Bennett in the out field as encouragement.  One of the mothers from the tent of boys behind the batting cage (where I was playing the role of catcher) piped up and asked, "is that Bennett, the one who this event is raising money for?"  I smiled and explained that it was.  Several of the mothers let out a sweet sigh.

Bennett came up to bat a few minutes later and I began noticing cheers coming from this group of mothers and their little boys, all who were dressed adorably in matching purple and white baseball uniforms with their respective nicknames hot-pressured in gold to the back of their shirts.

The cheers made Bennett feel like a million bucks.  He swung at the ball and ran towards through the bases as fast as his legs would take him.  It was a memorable moment for me, a microcosm of the entire day: to watch Bennett joyfully experience life using his precious lungs, at a fundraiser hoping to get him a cure, with a group of strangers cheering him on.

The top picture is of the 1st place Coed team called, "Highly Favored."  The bottom picture is the winner of the wiffleball tournament, team "Nursing Home Mafia."  

These sweet men, known as the Nursing Home Mafia, played against our family in the Wiffleball Tournament.  After they smoked us, everyone lined up to give high fives.  When we were done, Bennett walked up to me with a new one dollar bill.  I don't know who it was but somebody high-fived him a dollar as a sign of love.  He was delighted as the surprise he received. 

One of Bennett's favorite part of the tournament was most definitely being a concession stand worker.  Not only did he appreciate the reprieve of being inside the cool concession stand and eating candy when concessions were slow, Bennett loved helping people at the window.

Another special moment for Bennett was when Kyle Pearson, who plays on Team USA for ASA softball, autographed him a softball to keep.       

This is Laci, Sonny's and Casey's little sister who organized and coordinated much of the tournament this year, despite that she's 9 months pregnant with a baby girl.

I wish I also had a picture of Casey, Laci and Sonny's parents Charlie and Susan Rose who worked diligently to make sure things went right.  Charlie played on our wiffleball team at one point but spend much of his time fetching ice.  And Susan ran here, there and everywhere trying to track down more quarters and Gatorade for the concession stand.

I also missed a picture of Geoffrey Orr, who also worked incredibly hard to make sure the softball fields were in ready-for-play condition (did you know they actually burn the fields to get them ready??)  There are others that I don't have a picture of that are worth mentioning, such a the sweet ladies and two youngsters who worked with us in the concession stand and who volunteered their Saturday to help us raise money for Bennett.  I have no doubt there are others I did not and will never know who helped and for whom I am thankful.

When it was all said in this year's 16th Annual Sonny Rose Memorial Softball Tournament raised total of $6,800 for the Cystic Fibrosis Foundation in honor of Bennett!

The next day, before Brian, the kids and I left Louisiana to head back to Texas, our family had a chance to have lunch with Casey, his sweet wife, Sarah, and their two children.  It was such a treat to get to meet Casey's kids, whom I had only seen in pictures and to get to see Sarah, who had been watching the children all day the day before while Casey was busy with the softball tournament.  They are such a sweet family.

Casey has his own children to care for.  His sister and his parents know many other people who they could fundraise for in memory of Sonny.  So, the fact that this family chose our family and our Bennett to support again this year is even more meaningful.

I couldn't help but think of Sonny this weekend.  His presence was noticable - how dearly he is missed and loved.  I grateful that Sonny's family chooses to turn their loss into life...their grief into giving...and their love of their own into a love for my own.

Sincerest thanks, Rose Family,

Happy 3rd Birthday, Avonlea!

Monday, July 25, 2016

She's the cherry on top.

Her bear hugs are our favorite.  Her belly laughs are contagious.  She loves baby dolls, princesses and dressing up.  She hums the Star Wars theme song by memory and regularly plays "conflict resolution" with Bennett's Batman and Superman action figures.  She feels like everyone is her friend.  She has her brothers wrapped around her finger. And if she thinks you're cooking, she wants to be right next to you.  

It seems only yesterday we were announcing we were pregnant with this sweet girl.  Today this little bundle of joy is celebrating her third birthday!  

I thought long and hard about what kind of birthday party theme might best envelope who Avonlea is and what she's in to at this age.  But it didn't take long for me to recognize that, when you're a little girl who wants to regularly be referred to as a kitty cat, a kitty cat themed 3rd birthday is the best.

In order to keep birthday parties manageable as the children grow, Brian and I decided a few years ago create a family rule to limit the number of kids we invited to the children's party using their birthday age as a guide.  So, this year, Avonlea invited 2 little friends to her birthday party.

Avonlea was tickled pink over her kitty cat cake (which I found on Pinterest here and asked SimplyDelicious to make).  Three is such a fun age because *everything* is the most wonderful.  My favorite line that Avonlea regularly but randomly quotes is from Tangled: "Best. Day. EVER!!"

The little girls enjoyed fresh milk with their cake because every kitty loves milk (milk glasses were found at Target in the Dollar Spot).

Kitties also love mice.  These little strawberry mice, found here, were made with strawberry bodies, almond sliced ears, mini-chocolate chips and pull-apart Twizzler tails.  It calls for honey to keep the little eyes, nose and tails attached but I found honey to be a challenging adhesive.  Nonetheless, they were fun to make. 

Oliver wanted chocolate cake but Bennett wanted vanilla so I decided to make vanilla cupcakes (from a box) and used cut-in-half marshmallows as a "kitty cat paw print." For decorations, I made yarn-balls and hung some from the light fixture.  For party favors, each little girl went home with a stuffed kitty.  (Originally, I had wanted to have live kittens for the girls to play with at the party.  But, considering Brian is super allergic to cats, I decided to nix that idea.  Anaphylactic shock would not be a good way to end a birthday party.)

The girls mainly wanted to play with each other the whole time but one little activity I set up for them included "dressing up as kitty cats."  I cut several white marabou boas into 8-inch long strips to be used as kitty tails.  Felt, headbands and a hot glue gun were all that was needed for creating kitty ears. And then, to top it off, I also bought several pairs of white athletic socks at the dollar store and glued pink felt on them to make "kitty paws".

We've been practicing all day, regularly asking Avonlea, "how old are you!?"  She is still working on getting that new little finger to rise up with the other two.  

You couldn't be any more purrrrfect for our family, sweet kitty cat!  Happy 3rd birthday, Avonlea!

Sigmoidoscopy with Dilation - Numero Tres

Saturday, July 23, 2016

I wonder if this is the way people in the military feel when they deploy, return home, and deploy again.

In many ways, life with a chronic disease is nothing like military life.  Deployed military personnel have far greater challenges than we do on a regular basis, which is why these ongoing hospitalizations give me even more respect for what they have to deal with when it comes to living two separate lives.

There is a rhythm to life, both life in the hospital and life outside of it.  But those rhythms are very different. This every-three-weeks dip into "hospital life" is a shock to the system.  But we seem to adjust just in time for us to return back to "civilian life."

Bennett was admitted Thursday morning for his third sigmoidoscopy with dilation.  Everything went well.  During the procedure, the GI doc stretched Bennett's stricture from 12mm to 13.5mm (up from 6mm).  We have yet to see a huge decrease in the frequency of times Bennett has to go to the potty but that's also not a huge surprise since the hole is still pretty small.  We are all hoping we will see more success with following procedures.

The GI doc mentioned that, although she increased the size of the stricture to 13.5mm today, she was unable to place a 9-10mm catheter through the stricture.  She said that these things are not an exact science and sometimes it takes stretching a stricture pretty far before it stays opened to the size we want.  So, we aren't exactly sure how big the stricture is except that it's smaller than what we want it to be.

I am going to start trying to track Bennett's bowel movements now that we are back home.  It's hard when he's 6 year's old and it's summer.  He can't remember how many times he's pooped in a day and I can't focus enough, through the chaos of summertime, to remember myself.

Nonetheless, Bennett's next procedure will take place in 3 weeks.  The GI doc hopes she can stretch the stricture to 15mm.  After that procedure, we are looking at another procedure to stretch it to a size 18mm.  The pediatric surgeon will likely be involved during that effort.

It's hard to believe we have more procedures to go.  On one hand, these procedures couldn't go any better.  Our doctor is fabulous.  Bennett's body is responding.  Bennett is not in pain. We aren't having to be admitted more than one night.

On the other hand, these procedures are wearying.  Hospitalizations are inconvenient and interrupt our family life.  Bennett is tired of going through all of this stuff.  He wants to stop having to be poked and prodded. Giving your child miralax and enemas over and over again to prepare for surgery really sucks.  Bennett is tired of having to go without food to prepare for anesthesia.

Bennett and I (and Brian and the kids back home) are all focused on making the best of these situations.  We are tremendously blessed.  But sometimes...

I just stand in the hallway of this hospital, see myself in third person - beige walls surrounding me, cold white tile under my feet, the air filled with sounds of beeping machines and quiet chatter of hospital staff - and I wonder:

"how in the world did I get here??"

How did I get to the point where I know hospitals so well?
How did I get to the point where I no longer get nervous when Bennett is in surgery?
How did I get to the point where "going to the OR" feels as straightforward as showing up for piano lessons?

"Ya'll are both so relaxed," the Pre-Op nurse said to me off-handedly yesterday.  I looked at Bennett, who was peacefully grinning ear to ear from all of the "loopy" medicine that he received in preparation for his procedure.  I wasn't sure why she had used the word "ya'll".  I asked curiously, "we are??"  She replied, "oh yeah, you're so casual.  You say, 'yeah, we can do this or, we can do that' like it's no big deal."

Yes, she was right.  I was feeling very laid-back.  I am confident in Bennett's OR team and confident in his ability to tolerate the procedure.  But my confidence ultimately comes from the fact we've been here before...many times.  I might even feel a bit resigned.  Not much point in getting stressed.

I'm very ready for these procedures to be done.  I'm ready to stop the deployments.  I want to stay in civilian life.

But, while we're here, deployed to a place we do not call home, it's so great to have friends visit us in the trenches?

Thank you to our friends Lani and Roy who came Thursday night to play games with us and who brought goodies with them.  We were really glad Bennett felt so good.

We were also excited to be able to see our friend Megan who lives in Dallas and brought her new baby, Maren, to visit us right before we left to go back home.

As we were leaving the hospital, my new friend Katie, a mom of a child with a chronic disease, came and found me at the hospital to drop off some extra supplies her son doesn't need anymore.  Thank you Katie for sharing valuable g-tube supplies ya'll don't need anymore!

And thank you to all of our friends back home and far away who sent messages of love while Bennett was in surgery and in recovery.

While our time away was made sweeter by friends, my greatest motivation to make it home from this most recent hospitalization was to take Avonlea and the boys to see Beauty and the Beast on stage at the Waco Civic Theatre.  Thankfully, we made it in time.

It made my heart so happy to see Avonlea's face when she saw Belle on stage for the first time.  I loved hearing Bennett cackle when Gaston threw LeFou through the air.  I loved holding Oliver's hand during the songs.

Switching between hospital-life and home-life over and over again is challenging.  But, doing so only makes special little moments like these that much more meaningful.


Thursday, July 14, 2016

The blog has been quiet because my house hasn't been.  It's summer, so that means popsicles, playdates and visits to the pool for our family.  We gear up for another procedure for Bennett next week.  But for now, I'm happy to just focus on enjoying our fairly quiet summer.

Outside of summer fun and our regular visits to the hospital, one other thing that has kept me busy this summer has been working with Oliver, who I mentioned in this blog post has having been diagnosed with dyslexia.

I have given much thought about just how much I want to share about dyslexia on this blog, considering it's mainly about Bennett and his journey with CF.  But then I realized, my sharing about dyslexia is directly connected to CF.

Becoming a parent advocate for a child with a chronic condition like CF is not much different than becoming a parent advocate for a child with an educational disability.  Both push me to share things I've learned and resources that I have found to be immensely helpful, in hopes those around me, who are also struggling, can benefit.

So, for those who don't know much about dyslexia (or want to better understand what Oliver is dealing with), here's a quick Q and A with resources scattered throughout:

What is dyslexia?
Dyslexia is as a learning difference (considered a disability in the educational system) characterized by problems in processing written words into meaningful information.

Dyslexia is often over-simplified as a language deficit.  However, neuroscience shows us the brain is cohesive.  People with dyslexia actually think differently.

Neurodiversity, the diversity in how each of our brains work, offers a series of cognitive trade-offs.

People with dyslexia are often recognized for their difficulty with written language but may also struggle with executive function skills, working memory issues, attention issues, slower processing and issues with rote memory.

The cognitive trade-offs for people with dyslexia are that they are also known to exhibit huge strengths such as big-picture thinking, interconnected reasoning, problem-solving skills, ability to stay focused on a goal, unusual insight into complex systems and great creativity.

Many talented people struggle with dyslexia but benefit from dyslexia too: Steven Spielburg, Jamie Oliver and Richard Branson, creator of Virgin Airlines.

There are many others but my point in sharing well-known people with dyslexia is that dyslexia shouldn't be seen as a disability, something to "overcome," but rather something to embrace.  As long as we limit people with dyslexia to having a disability, we fail to see the amazing thinking process they actually embody.

So does dyslexia mean Oliver can't read?
Dyslexia means Oliver struggles with written language but it does not mean that he can't read.  In fact, Oliver reads above grade level!

Dyslexia looks different in every person.  For Oliver, dyslexia manifests itself in multi-step things that feel incredibly complicated, things like tying his shoes, figuring out a math problem, answering questions from a passage or organizing a project.  For Oliver, handwriting is particularly laborious.

Most people would never know Oliver has dyslexia.  He uses his advanced social skills to hide his struggles.  But school is very difficult for him.  He works extremely hard to do what is asked of him but becomes very overwhelmed having to do this day after day.  Without support, Oliver can easily feel he is not capable of things he is more than capable doing.  This is why addressing dyslexia is really important.  

What causes dyslexia?
Like CF, people are born with dyslexia.  Dyslexia is highly inheritable.  But, unlike CF, no one gene has ever been identified for causing dyslexia.

People with dyslexia have shown to use a different part of their brain to read than do those who do not have dyslexia.

It is believed that as many as one in five people have dyslexia. And most have a parent, grandparent, sibling, aunt or uncle with dyslexia.

With regard to our family, Brian and I don't have dyslexia but we know a few extended family members that do.

We do not yet know if Bennett or Avonlea have dyslexia.

How do you treat dyslexia?
Dyslexia isn't a disease.  So, there is no cure.  And I don't ever expect there will be one (nor do I prefer one).

Dyslexia is simply a different way of processing information.  The best treatment for dyslexia will be when the educational system catches up to science and begins supporting humans' diverse learning processes.

For people with dyslexia, written language can be very difficult.  Those with dyslexia often need to be taught to read in a very specific way.  Right now, Oliver gets on-going intensive tutoring outside the regular classroom to work on reading, spelling, writing and written organization skills.

Oliver will need this intensive tutoring for about 2 years to master his reading skills. But people with dyslexia may always struggle with reading, spelling and writing in some capacity for their entire lives.

People with dyslexia may need accommodations at school to help them reach their potential.  This isn't because something is wrong with them, but it is because so much of the educational system measures learning very narrowly, often with a focus on reading and writing.

As more and more classrooms become multi-sensory and more and more technology is implemented, I hope more people without dyslexia will see just how amazing people with dyslexia are.  As long as we look at people with dyslexia for what they *can't* do, we cannot see what they can.  If you know someone with dyslexia, you will know exactly what I mean. ;)

I love this chart - it shows how dyslexia affects people's reading abilities.  Notice how people's IQ scores go up but their reading scores begin to struggle.  People with dyslexia are typically able to stay up with their peers for a while.  But without extra support, their scores begin to suffer:

How early can you test for dyslexia?
Children can be tested for dyslexia as early as the age of 5.  The earlier a child is treated, the greater their success in school.

It is NOT true a child must wait until 2nd or 3rd grade to be tested.  If a parent or teacher has been told he/she must wait until the child is older/fails in school, it is out of a desire to protect limited school resources, not out of protection of the child.

The first 2-3 years of primary school is spent learning to read.  All of the rest of the school grades are spent reading to learn.  Time is not on your side.  Testing should be done as early as possible.

By law, schools must test students enrolled in the public school system whose parents send a signed letter to the school in writing requesting testing be done.  Many states have a law that testing must begin within a certain number of days from receiving that letter.  Make sure to keep a copy in your own records should there be a delay.

Testing in the public school, while free, may work well or may be too generic to identify the child's specific needs.  If testing within the public school system is too slow or too generic, I suggest moving forward with private testing.

Once test results identify a child has a learning difference that is considered a disability, like dyslexia is, the child will be required by law to receive support services in the classroom through an IEP or 504 plan.  Texas considers students with dyslexia to be covered under a 504 plan.

How do you test for dyslexia?
Educational psychologists have a variety of tests they use to test for dyslexia.  I recommend looking for someone who can give a full "psycho-educational assessment."

The public school's special education system can test but I highly recommend private testing as it can provide more specific testing than the public school system can offer students.

Brian and I felt full psycho-educational testing was important for understanding Oliver's issues in school.  We wanted to have all parts of his cognitive and psychological processing evaluated to give a better picture of what might be going on.

Oliver was tested at the University of North Texas-Denton's child psychological department and the UNT-Denton Speech and Hearing Clinic.  The testing took place over 3 half days.  We were very happy with the process and all that we learned about how he learns and how to help him.

There are many organizations, people and universities around the US who offer psycho-educational assessments starting at age 5 or 6.  Some are very expensive.  Others are more reasonable.

Universities often offer more cost-effective testing as those who are doing the testing are often students themselves learning under professors.  I suggest asking around.

Here is a great website that tells more about testing for dyslexia, specifically:

My child has a dyslexia diagnosis. Where should I go now?
Here is a great resource for how to approach your child's school about your concerns:

I recommend using the Orton Gillingham approach to addressing reading issues with dyslexia.  I also recommend Take Flight.

Once you know your child has dyslexia, I highly recommend learning as much as possible about it. Here are some good books to read: Overcoming Dyslexia, the Dyslexic Advantage, the Dyslexia Empowerment Plan

Here are several documentaries about dyslexia I really love: HBO's The Big Picture, Rethinking Dyslexia (see the trailer here) and Embracing Dyslexia.

I'm a teacher who has students with dyslexia in my classroom.  I am not trained to teach children with dyslexia.  Any recommended resources or advice for me?

Here are two resources I recommend: and

As a mother of a child with dyslexia, I have three pieces of advice for teachers of students with dyslexia (which is pretty much every teacher as dyslexia is the most common educational special need):

1.) Recognize that dyslexia is not just a reading/writing/spelling issue.  People with dyslexia think differently.  This will impact everything they do in your classroom.

2.) Embrace the whole child.  The child is not the child without this learning difference.  Dyslexia is something you will have the opportunity to address in a variety of areas and that you will benefit from in your classroom.  Children with dyslexia will surprise you with their thoughtful insights and their creativity.  They may also surprise you with their tendency to struggle in areas you wouldn't expect.  Embrace all of them.

2.) Believe in this child more than anyone ever has in their entire life. You have the power to make a HUGE life-changing difference.  Ever considered what left-handed people feel like as they live in a right-handed world?  Imagine that experience 10 times worse.  People with dyslexia have to live life in a world made for non-dyslexics.  Written language is the key to success to so much in life, especially when it comes to school.  So, to struggle with written language means school work is arduous, success is limited and expectations are overwhelming.  The fact that children with dyslexia face this challenge every day and do so with great strength is something to be admired.  Children with dyslexia become accustomed to failing, to not meeting the expectations of the teachers/adults around them and begin to hate themselves for what they can't do.  Having a teacher who believes in them - who sees beyond what they can't do and instead sees what they can do - can make a huge difference in the life that child.

Fourth of July 2016

Monday, July 4, 2016

July 4th is my favorite holiday of the year.  I started taking pictures of the boys on July 4th in 2010.  It's a lot of fun to see how much the boys (and their little sister who came along 3 years later) are growing!

July 4, 2016 (Oliver, 8; Avonlea, 2; Bennett, 6)

July 4, 2015 (Oliver, 7; Avonlea, 1; Bennett, 5)

July 4, 2014 (Bennett, 4; Oliver, 6; Avonlea, 11 months) 

July 4, 2013 (Bennett, 3; Oliver, 5)

July 4, 2012 (Bennett, 2; Oliver, 4)

July 4, 2010 (Bennett, 10 months; Oliver 2)