The best thing the CF Foundation is doing that you've probably never heard of...


If you are in the CF community and haven't heard of it yet, you will soon enough.  It's making it's ripples and those ripples are mighty.

It's called the CF Learning Network (CFLN).


I just returned from our most recent CF Learning Network Community Conference in Minnesota this past weekend, which was really fantastic, and I thought it might be a good time to share about the CFLN so others know what great things are going on in our community.

The CF Learning Network is a network of CF Care Centers, patients and family members and quality improvement experts working together to improve the way we do CF care.  The CFLN has been a 3 year pilot, funded by the CF Foundation, to find better and faster ways of improving health outcomes for those with CF.

The CF Learning Network is one of 9 networks run by the Anderson Center at Cincinnati Children's Hospital and was brought to the attention of the CF Foundation by my friend and fellow CF mom, Erin Moore.  Erin saw other disease communities making impressive progress and wanted those with CF to have the same benefit.  Fortunately, the CF Foundation agreed.

The goal of the CF Learning Network is to learn together to find ways to improve CF.  If one CF Care Center has better data - such as, if someone knows how to improve lung health well,  the work of the Network is to help that Care Center identify what specific things they are doing in order that other CF Care Centers can replicate their process and improve lung health well too.  It's not about finding which CF Care Center is best (using data for judgment)...but it's about finding ways so that everyone can do it best (using data for learning).  If one of us improves the way we do CF care, we all should improve the way we do CF care.

As my friend Erin often says, "improved CF Care shouldn't happen by chance."  Improved CF care should happen systematically.  That is what the CF Learning Network is trying to do - systematically replicate good practices to improve CF Care faster.  This is done by using specific tools called, "quality improvement skills."  These quality improvement (QI) skills can easily be learned and used by both clinicians and patients/caregivers to learn, replicate and improve the way we do things.

In addition to the use of quality improvement skills to make good CF Care replicable, another important focus of the CF Learning Network is to improve "co-production."  Co-production is a buzz word that refers to patients/family members working together with clinicians to improve care.



Every team within the CFLN has been asked to have at least one Patient and Family Partner on their team - every CF Care Center that participates in the CFLN must work with one person with CF or a family member to work alongside their Quality Improvement (QI) team to make decisions.  My own role in the Network is to both support our Patient and Family Partners in their unique positions and to learn how teams can improve that partnering experience for everyone involved.

The CF Learning Network is working hard to improve the asymmetry of the patient/clinician relationship, not just when co-producing on a Care Center-level but also on an individual co-production level when caring for a patient in the exam room.

For so long, health care has been paternalistic. Doctors/clinicians were once thought of as the all-knowing "experts" who "give health" to patients/family members.  But, times have changed.  Now, health care is patient-centered.  Thanks to the internet, patients and caregivers have access to more information than ever before.  And now, clinicians are become more and more aware that there is no one more engaged in their own health than the patients/family members.

So, the CF Learning Network is capitalizing on this new way of respecting each other and working together. No longer are patients/family members and clinicians working on two opposite sides of the health care system, we are one.  We are on one team - two experts (clinicians, the experts of CF and patients/caregivers, the experts of their own experiences) with two separate sets of skills and knowledge sets - working together for the same goal.

I have been involved since the early design phases and have watched the CF Learning Network grow from a small group of patients/family members and clinicians to almost 30 Care Centers involved in the work.

Why is it important for the CF community to know about the CFLN?  Because it's a game changer.  It is the hope of the Network that as more people participate in a new way of doing CF care, our ability to improve the lives of those with CF will only get easier and better.  Excellent medicines for CF are coming.  But until then and even after, we've got to figure out better way to manage this disease and it's symptoms in whatever form it continues to exist.

CF Moms Pam, Erin and me - we've been working on this Network stuff for a very long time!

This past weekend was our 3rd CFLN Community Conference.  We spent 3 days listening to presentations, learning what others are doing well and discussing ways to improve together what we are already doing.  There are common measures/goals the entire CF Learning Network has decided to focus on and everything that we do within the Network is to improve those particular measures/goals.

Things we often talk about within the CF Learning Network are the burden of care for CF, the quality of life of those with CF (and their families), the new challenges that come with growing life expectancies and new medications coming on the market.  We've dawned a new day in CF care and I am grateful to be a part of a new way of addressing those changes.

If you'd like to know if you're CF Care Center is participating, click here: https://www.cflearningnetwork.org/partners/.  If your CF Care Center doesn't yet participate, let them know you would like them to do so in the future when the Network opens up participation again. 

The CF Learning Network has historically been called the "CF Care Model of the Future." But I am so grateful so say the future is here.

An update on Bennett

We were able to escape the flu this year.  In January, Brian and I decided to keep Avonlea from preschool for about six weeks and we decided to stay away from the public as much as possible.  This turned out to be a good decision.  Our entire family stayed very healthy throughout the winter.

We even pushed back Bennett's quarterly CF appointment until Spring to prevent Bennett being needlessly exposed to the flu.  So, Bennett finally had his CF Clinic appointment today. 


To our surprise, Bennett's lung function went down.  It is so weird when this happens because he's showing no respiratory symptoms.  Our CF doc thinks the lower lung function is either a fluke (Pulmonary Function Tests, known as PFTs, can be difficult for kids to get just right)...or she thinks it's due to a typically common bacteria called MSSA (Methicillin-sensitive Staphylococcus aureus).  Because we've seen his lung function drop before, Bennett will be given a round of oral antibiotics to treat MSSA, which worked in the past.  There's a chance that this drop in lung function could be due to some other bacteria or fungus in his lungs.  But we won't know this until we get back our routine throat culture results next week.  In general, people with CF have a 3% drop in lung function each year.  But, it feels pretty worrisome when it happens without explanation.

Today's lower lung function is just a signal that CF is working behind the scenes against us. Eventually, if we can't get Bennett's lung function back up, Bennett will require IV meds and a lengthy hospitalization.  We aren't there yet.  But we're inching closer each time this happens.  It's so frustrating to have CF slowly take away Bennett's ability to breathe and not to really be able to do much about it.  There are meds to treat.  But the meds really just delay the inevitable.

I don't feel hopeless.  But I do feel helpless.

Bennett's lungs have been so healthy.  He's eight years old and so many children with cystic fibrosis never get to age 8 without an exacerbation or without a serious lung infection.  So, we feel tremendously blessed that he's this healthy this far in to his life.  But, I still feel sad about today's drop in lung function.

To add to my feeling a bit bummed about today's appointment, Bennett continues to grow on his growth curve (height and weight) but he's still underweight and under where we all want him to be.  He needs the extra weight to help him grow taller and to help him address future health issues he's inevitably going to run up against.  Good nutrition is really critical.

But, weight gain feels so elusive to me.

Twice daily treatments, 4 nebulized medicines, every-other-day cleaning and sterilizing of equipment, 3-4 enzymes 7 times a day (every time Bennett eats), 2 meds given at night, 4 meds given in the morning, 1 med given 3X a week, 1 capful of Miralax in 4oz Gatorade given daily, 2 gummy vitamins...

and that doesn't even include the routine for gaining weight...

30 minutes 2X daily on the feeding pump with Reliazorb cartridges, along with 15ml of liquid fat given 3X daily

It seems so simple.  But it's a mess to organize.

I have to have the feeding bags, extensions, the feeding pump, syringes, the Reliazorb medication, the Liquidgen liquid fat and the formula.  Only three of those items insurance will pay.  In addition to the 15 minutes it takes two times daily to set up the feed, Bennett has to find an hour in his day to be sitting on the pump.  Of course the feeding pump has to be charged and Bennett has to be able to tolerate the forced feeding, which often causes him to feel nauseous, overwhelmed by acid reflux and gastrointestinal issues.  Very often, by the time we get one thing in, we find ourselves running up against something else with CF that we haven't gotten in.  I end up having to prioritize his CF care to evaluate which of the things gets "bumped" for the day.

Every day I set out to do all the things on the list of things to do for CF.  And every day, I feel the struggle of managing CF, as well as everything else within my power to manage in my role as a parent, wife, friend, daughter and healthy-self.

What's equally hard is knowing in the back of my head that CF doesn't quit.  CF doesn't go into remission.  In fact, it just gets harder, throwing bigger punches as time goes on.

To prevent feeling discouraged, we work to celebrate the joys we have right now.  Delaying CF's erosion of the body is still a huge win.  Bennett's lung function went down but his lungs still sound great.  Bennett hasn't gained as much weight as he needs.  But he didn't lose any and is continuing on his growth curve.

I am confident we'll get that lung function back up and will make strides in his weight gain.  We made it through a pretty yucky flu season.  We'll make through this hiccup as well.

Why getting the flu is so scary for Bennett

Since returning home from the hospital two weeks ago, Bennett has been doing really well.  He feels great and is showing no more GI symptoms.  He's on a capful of Miralax a day, which seems to be just perfect for him.  So, now, we are turning our attention on trying to keep him healthy during the flu season.


The flu is always scary when you have a child.  But, considering this is potentially the worst flu season in history and considering the fact that we already deal with an underlying chronic disease like cystic fibrosis, I literally wake up every morning thankful that we have escaped it one more day.

I know I can't do much to prevent getting the flu.  The flu is practically everywhere.  But we're certainly trying to be as safe as possible over here.

There are four main reasons why the flu is particularly bad for Bennett (and all those with cystic fibrosis):

1.) The flu risks serious complications in people with cystic fibrosis, including death.  CF already causes the body to be inefficient in providing the body nutrients and working properly.  The added stress of the flu and lack of appropriate fluids can cause the body to struggle even more.  This can affect the liver and the heart in ways that are particularly serious.

2.) The flu risks Bennett losing weight he can't afford to lose.
Bennett has struggled with gaining weight since he was a baby.  He is consistently underweight and too low for the BMI he needs to have to be healthy.  Getting sick only taps his body more and uses up the limited resources he has.

3.) The flu risks a hospitalization and getting sick with something else.
Our recent hospitalization only further motivates us not to want to land in the hospital.  Thankfully we made it out of our last hospitalization with no flu or additional sickness.  But the hospital is full of bugs that can make Bennett very sick.  So, we want nothing to cause us to be forced back in to the hospital again.

4.) The flu risks damaging Bennett's lungs in a way that he may never fully recover.
This is the part of the flu that most healthy people don't ever have to think about.  Most of the time, our bodies repair themselves without any issue.  But, in CF, it's different.  The word "fibrosis" in cystic fibrosis means scarring and thickening, which is what happens to the lungs when they continue to try to repair themselves. Many times it's a cold or the flu that can bring upon an infection that gets stuck inside the CF lungs.  CF lungs can continue to struggle with it for a very long time, causing damage over time.  In addition, CF lungs are susceptible to lots of rare "opportunist" infections that look for opportunities to nestle themselves in the lungs when the person is already fighting another infection.  It becomes a problem on top of a problem on top of a problem.  So, while the flu may be well over, a new issue in the lungs may rear it's ugly head.

What we are doing at our house to prevent the flu:

It turns out that homeschooling the boys has been really beneficial with regard to their exposure to germs this winter.  In fact, realizing Avonlea was still a risk of bringing it home, we decided to pull her out of preschool for a few weeks to minimize our chances of Bennett getting sick.  Based on the reports I'm getting from inside the classroom, it seems like this has been a good decision so far.

We are minimizing getting out in public as much as possible.  But if we have to get out, we get out during the week, particularly in the mornings, when places are less frequented.

We spend a lot of time outside, playing on bikes and playing in the sun (when it's warm).

We've already gotten the flu shot (something we do every year).  And we're poised to get Tamiflu if necessary.

We are asking anyone who comes over to our house or to play to make sure they haven't been around anyone who is sick in the last 48 hours.

We are washing our hands, using hand sanitizer, not getting too close to strangers and regularly talking about how to prevent getting sick.

However, I feel pretty helpless right now.  It's such a fine balance.  While staying away from sick people is beneficial, staying away from people, in general, can begin to feel depressing.  So, it's a balance between not becoming hermits but also staying safely away from those who may pose a risk to Bennett.

Thankfully, our friends and teachers have seemed to understand.  It helps to talk to other CF parents online who articulate they are dealing with the same fears.

It's hard to be afraid of invisible germs you can't see.  You can feel like you're crazy.  And yet, when I talk to people who have had the flu this year, they remind me I'm not.

It always feels good when someone says to me, "you're doing the right thing" or "that's smart."  It makes me feel better about leaning on my own motherly intuition to keep my child safe.

One of my new favorite crowdsourced websites right now is Flu Near You, a website where you can track flu activity near you.  It's not quite as robust as it needs to be but it's a great way to capture what's going on with the flu on the ground.

Reports say the flu season may be peaking right now so I'm hopeful we're headed out of this flu seasons soon.  Of course, reports are we still have another 11-13 weeks.  And even then, we may still get it.  But I'm trying to do whatever I can to use the knowledge I have to keep Bennett's lungs in the best condition they can be for as long as can be.  That's my job.  I'm his mom.

Rest


We were discharged and arrived home at 9:30pm last night.

This morning, four out of the five of us didn't wake up until 10:30am.  It was so evident that each of us had much-needed sleep to recover.  It felt good to wake up feeling rested.

Since Brian had to go to work this afternoon, we spent the day as a family trying to make up what we lost over the last two days.  We unpacked.  We took down our Christmas decorations.  We shared a meal around the dinner table.  We rode bikes.  We played Barbies.  We rested.

Throughout the day, I found myself reflecting on our recent hospitalization - moments would flicker in my mind - no doubt an effort to process it all.

Today, I reflected on our super fun ER nurse who was with us the 10+ hours while we were there.  He was so on top of everything and made our time there as comfortable as possible.  He asked for things on our behalf even before I did.  (Really, all of our nurses were wonderful this hospitalization.)

I thought back to the Radiologist who made a really bad gastrografin enema just a tiny bit better by her attentiveness to details and compassion.

I laughed to myself today when I remembered how random it was that Bennett and I accidentally ran into our GI doc in the hallway after Bennett's first X-ray early Friday morning.  Although typically I will contact our GI doc to let her know when we go to the hospital, I hadn't yet had a chance to do so since we had come overnight.  From that point on, even though she wasn't on call at the hospital, she stayed in contact with all the doctors involved in our case and helped decide what should be done for Bennett.  In my disappointment of being admitted, she called and helped me better understand his situation.  I rested in the trust I had in her, that she knew Bennett's case well, that she knew we didn't want to be there and that she would advise the docs on whatever she felt was best for him.

I have continually been touched by the many friends and family who have reached out to us via text and social media letting us know that we're not alone, that they are praying for us and that they are cheering us on. 

This afternoon, I received a sweet email from Bennett's CF pulmonologist who had heard from her colleague that we were in the hospital and just wanted to check in.  She even included an email to Bennett to let him know she cared.

I really hate CF.  But these little moments of support and love are a bit like a mother's kiss - Nothing can take away the situation.  But connection of people who care does make it feel just a little bit better.

For everyone who continues to ride this journey with us, thank you.

This is what crazy is made of - 3:45pm post

(Bennett's face captures his excitement of eating for the first time in two days.
I put his spaghetti in a styrofoam cup, which is weird unless you consider so is the smell of hospital dishes.)

Last night, upon leaving the hospital, Brian and I called our parents to let them know Bennett might need surgery.  Both of our mothers actively discussed plans to possibly come to Waco to help us.

And yet, 24 hours later, we're being told we will be discharged tonight.

As quickly as things went south, things have gone north again.  Don't get me wrong.  I'm happy.  In fact, I'm thrilled.  But this is what crazy is made of.

Normal life...serious condition...hospitalization...possibly more a serious condition...then back normal life.

As quickly as we can accommodate to one thing, we end up having to accommodate to another.  Sweet Oliver cried over dinner tonight because we'd not be staying the night after all.  It was just last night that he was begging not to have to leave our house and to go the hospital in Dallas.  These schizophrenic changes have an affect on each of us.

Nonetheless, being discharged tonight is excellent news.  This afternoon, Bennett's IV blew (aka started swelling his hand) so they took it out.  He begged that we not put it back in.  They said they wouldn't replace it as long as his bowel clean out was done.  About that time, Bennett's colon showed signs it was fully cleaned out.




The docs asked for one more X-ray to confirm.  If it looked good, they told him, he could eat.  So, Bennett has started eating.  If he can tolerate his food, which everyone expects he can, we'll pack up and go back home tonight.

We're really glad this is over.  But, part of me is asking, "Am I crazy? Did it really just happen!?"

Moving along well - 12:47pm post


Bennett started responding to yesterday's enema around midnight so the team started him on GoLightly, which is used to clean out the colon.

At 6am this morning, Bennett was given a belly X-ray.  The X-ray showed marked improvement so Bennett's 8am enema was cancelled.  Surgery has also been taken off the table.

About an hour ago, three Gastroenterology med students, 2 residents, 2 fellows and an attending came into our room to give us an update.  The attending explained that his X-ray looks so well they believe we are on the downhill slide.



Yesterday's x-ray (left) vs today's x-ray (right); black insight the belly is trapped air between the stool

Bennett has been given the green light to start clear liquids.  Once he has nothing in his bowels, they will let him start eating again.  They have started enzymes (without food).  Since Bennett's bowels being cleaned out is what we are waiting on, there is a good chance that we may be discharged tomorrow.

The attending said part of the complication with Bennett's situation is that he didn't present as a classic DIOS case.  DIOS cases usually show symptoms happen quickly (within a few days).  But, for Bennett, he was presenting symptoms several weeks ago.  So, the team felt very confused on whether or not his issues were a stricture, constipation or DIOS.

Bennett is feeling better now that his belly isn't full.  Thankfully, Bennett has felt good most of the time here.

Bennett did share his thoughts this morning when Brian took Oliver and Avonlea downstairs.  He told me, "I was telling Daddy last night about how I'm scared about the future.  I'm scared because I don't know what's going to happen with CF."

I just listened but I wanted to grab him close and reveal to him: that's the *exact* feeling I'm feeling right now, Bennett.

He went on, "It's like you're at home and then you go to the hospital they say you can't eat and you have an enema.  The hardest part of the future is not knowing.  I feel like, it's a maze...like God can see it on the top.  But we can only see down at the bottom."

We prayed last night, all five of before Oliver, Avonlea and I left to sleep at my sister's house.  We prayed that God would give Bennett peace, that the treatments would work...and that Bennett wouldn't have surgery or an enema the next morning.  Part of me cringed because I didn't want him to be heartbroken if God didn't answer his prayer.

But Bennett reminded me this morning that God had heard his prayer.

Brian told me that he shared that when Bennett told him how he felt scared about the future with CF that Brian responded to him, "even though we don't know what's going to happen in future, we know that God sees the future and is already there preparing good things for us."  He said he told him, "That's why we can wake up each day and look forward to it because each day is a gift that God gives us, it's a present we can unwrap."

I'll be honest, I haven't enjoyed unwrapping the days where CF is involved.  And hearing Bennett say that he is scared of the future is hard to hear because I know he doesn't even know what statistics say the future holds with CF.  He only knows his short life experience with it.

But it's good to hear him talk about his fears.  And it's good to hear my husband remind me God is there.  And it's good to remember that yesterday is over.  Tomorrow has not come.  Today is what we have.  And today is looking pretty good.

Hoping this is all over soon,

Admission for DIOS - 6:55am post


We have been unexpectedly admitted again.  For GI issues again.  I feel like I'm in shock.

It all started several months ago, Bennett started showing returning signs of a bowel blockage.  Bowel blockage is a common complication in CF.  I feared another stricture but knew compaction of stool is more commonly the issue.

Since there were only slight changes in the frequency of his poops,  his doctor and I decided get Bennett an X-ray about 6 weeks ago.  Everything seemed to look fine on the X-ray so we decided to see if symptoms improved.  If they didn't we were going to do the barium enema in February to see if possibly his returning GI symptoms were due to another stricture forming.

While traveling over the Christmas holiday, Bennett had two episodes where he couldn't make it to the bathroom in time.  His GI symptoms were quickly becoming disruptive.  So, his doctor and I agreed to move the barium enema test up to next week - to Tuesday, in fact.

On Monday or Tuesday of this week, Bennett started complaining of abdominal pain.  Abdominal pain in CF is not that uncommon so I worried a little but figured it would subside. Besides, he's 8 years old so his complaints about ailments aren't always very clear to me.  I couldn't really tell whether or not to worry.  By Thursday's complaints, I decided a bowel blockage might be emerging so i began the at home regimen for such a thing: large doses of Miralax.  I just kept hoping to make it to Tuesday.

But, late Thursday night, upon returning home from of hanging out with some close girl friends, I found Brian with Bennett who was on the potty doubled over in what Bennett described as "9 out of 10" pain.  At that point, I realized we wouldn't make it until Tuesday.

I feared a complete or nearly complete blockage, likely due to a stricture (meaning scar tissue in the bowel may have completely closed up). I got in the car at 1am and drove to the ER.  Brian stayed home with the kids that night.

After a 10+ hour day in the ER yesterday, we are now fully admitted to the GI floor at Children's Medical Center.  The good news is the doctors were able to confirm that there is not a stricture forming from our last surgery.  The bad news is Bennett was diagnosed with Distal Intestinal Obstruction Syndrome (DIOS) - a blockage in his ileum where the small intestine and large intestine meet.

DIOS is relatively common in people with CF, particularly those who were born with meconium ileus, which includes Bennett.  Food gets stuck in the bowel and can't move through.  It's like constipation in that it's stuck poop in the bowel.  DIOS is different because it happens quickly, rather than gradually as constipation does.  Unfortunately, the bowels of many CF people just doesn't have the hydration it needs to move the food through easily.  People with CF are always concerned about bowel issues such as this.  There are not a lot of good medicines for improving the CF bowel yet.  So, there's not a lot you can do to prevent it.

Right now, we've been told Bennett will likely be in all weekend.  They will keep doing gastrografin enemas every day until they can break up the blockage...or until surgery becomes the only option.


Bennett had to undergo two enemas yesterday.  I can't even describe how awful that was...two in one day was literally traumatic for him.  I told the docs that when we do another this morning, they have to give him medicine to relax him and to give him pain medicine.  I refuse to allow that to happen to him again.

I feel like I'm in total shock that we're going through this again.  I feel like...that feeling you might have if you've accidentally driven your car into a telephone pole...like I'm still just trying to stand up and shake it off.  But questions inside my head keep arising: "what am I doing here?" "is this really happening right now??"

Bennett had been doing so well.  And then boom, almost without any warning, we're in the hospital looking down the barrel at surgery again.

We knew, since Bennett was born with meconium ileus, he was at risk for DIOS.  But like most of these things, we hadn't really been prepared for what we would deal with.  This is a whole new learning curve and one I didn't want to learn right now.  We just returned from traveling, and Christmas holidays - we're still getting over two surgeries and a colostomy from exactly one year ago.  Besides, we had things planned for this weekend.  But CF doesn't care.

I will not be surprised if Bennett doesn't walk away from this situation with PTSD.  It's' hard to believe that one day you're fine and the next day you're absolutely not.  ....and this is your life.  This was supposed to be the easy part of CF, the early years.  And yet, we're being hammered with these things over and over and over again.

Today, we face another day of addressing this DIOS.  Bennett is showing some small improvements so we are cautiously optimistic.  But we've been told we'll be in the hospital through the weekend, maybe in to next week.  We'll see how today goes. 

"Sometimes, I wish I was never born."



We had just finished our 1 hour of math and reading at the kitchen table that morning.  Bennett had just finished crying (some of the time actually screaming) through it, an increasingly common behavior for him at the time.

In so many ways, homeschooling had seemingly been going so well since we began homeschooling in May.  But now, in the middle of October, it was becoming increasingly unbearable for the both of us.  I kept trying new things - slowing down the work, giving him more support, giving him more independence, giving him encouragement, being patient with him at all costs - but nothing seemed to help.  He had the skills to read and to do the math being asked of him.  But it was like he was shutting down on himself.

After that particular morning's work was deemed complete and his crying had stopped, I made an effort to engage Bennett in a deeper conversation of how he was feeling about himself.  I sensed a deep sadness that I wanted to relieve.

I asked, "Bennett, what do you like about yourself?"

Still sitting at the kitchen table, Bennett looked down, shuffled his feet for a minute and then asked, "you want to know what I like about myself or what I hate about myself?"

I paused to think of what to say.  Those words were like a dagger in my heart.  I tried to move on. But I knew his question was really a statement.

I said, "I want to know what you like about yourself."

Bennett looked down again, still struggling to find an answer.

He finally replied, "I don't really know what I like about myself...but I know I hate - that I have dyslexia.  And I hate that my body doesn't work right, that I have CF."

And then he said, trying to hold back tears: "Sometimes, I wish I was never born."

I looked across the room at Bennett, this time intently listening to what he was telling me.  All of the sudden, I took greater notice of him sitting at the kitchen table as we spoke.  There he was, sitting  while connected to his feeding pump, which was silently pumping supplemental nutrition into his belly.  He had just had to endure an hour of math and intensive multi-sensory Orton-Gillingham reading tutoring (that all kids with dyslexia must go through to eventually master written language).  For me, our work was done.  But for him, the work had just ruined his day.  And he couldn't even play until his pump was done.

My heart broke for him into a million pieces.  Even when he wants to pretend he doesn't have cystic fibrosis or dyslexia, he can't.  They are always there, a constant reminder of how he's different and constant whisper that somehow he's broken.

Despite that I had spent hundreds of hours trying to address Bennett's learning needs, researching curriculum, evaluating new ways to teach basic concepts, speaking to him about grit and perseverance...it just seemed like that the more that I tried, the more I saw his self-confidence deteriorate, even when I thought we were addressing the core issue at hand.

I brought this to my own therapist the next day and had good ugly cry over it.  There's little more painful for a mama to hear than her young child, so pregnant with potential, articulate he sometimes wishes he hadn't been born.

When I shared this with her, my therapist, always a calming voice for me, agreed that my intuition was right: I needed to stop what we're doing and do something else.  She recommended that I look to maximize what Bennett is good at and to focus on building up his self-esteem, even at the risk of backing off the school work that we were doing.

Should I just stop completely formally teaching him anything for a while?  I wondered to myself, but didn't voice outloud.

Later that day, I chatted with Bennett's play therapist on the phone during our routine weekly check-in.  She shared with me how Bennett seemed to be doing, based on her observations of his play in the therapy room.  I shared with her that Bennett's interest and effort in schoolwork has not improving, quite possibly deteriorating.  I shared that I felt like he was giving up and maybe not even benefiting from what work I was doing with him.  I shared with her Bennett's conversation with me from the day before.

I asked, a bit rhetorically, but this time out loud, "Should I just stop teaching him for a while?"

To my surprise, she replied, "yes. I definitely think you should stop."

My heart skipped a beat.  All kinds of thoughts flooded my mind:  Wait, I can't actually stop school...Can I? I'll be a bad mom. I'm going to screw him up.  Maybe I've already screwed him up?  He's never going to learn how to read and do math.  What if he gets behind?  He probably already is behind.  How do I catch him up if I just stop?  What about Oliver, do I stop teaching him too?  How do I quit teaching one child but try to convince the other child to keep doing formal learning?  Why do we have to deal with both dyslexia *and* cystic fibrosis?  Is this the best thing that just happened to us?  Or is this the worst?

With my internal thoughts swirling, I needed to sit down.  I grabbed my purse, abandoned my Target shopping cart and sat down on the little bench in the children's shoe aisle.  Moments before, I expected this call to be just a brief chat with Bennett's play therapist when, in fact, this became a game changer conversation that would effect everything.

I agreed with her that Bennett stopping formal learning could be beneficial for him.  But, I worried...was this all my fault??  I'm his teacher now.  If he's struggling at this point, is it because of me?  I hid my fear and aching question behind a less personal question.  I asked, "So, if he was in a traditional classroom at school right now, would you be recommending that I actually pull him from school?"

Without missing a beat she responded unequivocally, "yes. absolutely."

Bennett's therapist shared how her observations of Bennett and my feedback about what was going on at home indicated that Bennett needed some time to gain back his emotional health, to see himself in a positive way and to experience success.  She explained that she didn't think we'd need to stop formal education for a really long time but for a long enough period that he could really gain some inner strength.

"How long are we talking about?  Are you thinking 6 months or a year?"

His therapist replied, "I imagine no more than six months.  But I think we'll know when it's time.  He'll start to show us both inside and outside of the therapy office."

On one level, this information felt surprising.  And yet, another part of me felt like this was exactly the what I needed to do.

It hadn't been that long ago that Bennett was going through multiple surgeries and faced an unexpected colostomy.  It certainly made sense that he might need more time to heal from such a traumatic experience.  And while we enjoyed our summer, the reality was that we had been working on school work practically every weekday since the end of the school year last May.

A well-known recommendation in the homeschooling community is that when kids move from traditional school to homeschooling, they should be given a break of 1 month per year the child had been in traditional school.  This break is often referred to as "deschooling" as it's intentional time to disconnect and decompress from the traditional classroom's expectations of learning.  The goal of "deschooling" is to give the child a love for learning again and to allow the child to pursue their own interests.

Not realizing how incredibly important this "deschooling" process is, I chose for us early on to not take a break.  Looking back, it's no wonder we hit a wall.

I decided that day in Target that I would begin "deschooling" both boys until after the Christmas holidays.  I needed to give myself a "deadline" so that when fears crept up within me about my boys "getting behind" in their education, I could remember that I had made the intentional decision to have peace about it for several months.

Interestingly, many families who "deschool" actually begin to love the process so much they decide to adopt the philosophy full time, which is often called "unschooling".  I don't yet know what homeschooling will look like for us after our "deschooling" experience, but, the one thing I do know is that in the 8 weeks since Brian and I started caring more about where our kids are emotionally than where they are academically, I have never felt more peace within our family, I've never felt more satisfied in my role as a mother and I've never seen my kids so consistently balanced.  Finally, life finally feels symbiotic.

Instead of worrying about whether Bennett's reading skills are "on grade-level," I'm more interested in getting to know Bennett deeply and finding out what he is most intrinsically motivated to learn.
Instead of worrying about Oliver's mastery of rote multiplication facts, I am now paying attention to whether or not Oliver is getting enough uninterrupted play time outdoors or how I can feed his love for all things World War II.  There is incredible freedom that comes from being able to get off the conventional educational treadmill.

CF and dyslexia both suck.  But they are the two things that God has consistently used to prompt our family to slow down and to rethink what we are doing and why.  Like strategically placed road bumps on a busy street, they continually force us to ride our breaks and notice the landscape around us.


I remember tearing up in the principals office of the boys' school last May, when Brian and I shared with the principal that we were planning to homeschool.  Even though I knew it was the best decision for our family, I felt like a total failure - like somehow my kids had flunked out of life for needing a different support system for learning.  I expressed to the principal that I wished my boys were typical.  Essentially, I tried to apologize for their being different.  I wanted them to fit in the box.  Deep down, I just wanted to be the same as everybody else.  I didn't like these continued situations that were bumping us off to side-roads.

And yet, now, having found ourselves on a quiet dirt road, away from the busyness and chaos, I keep thanking God for the huge ways CF and dyslexia blesses us.  Bennett's needs are different.  Oliver's needs are different.  That's ok.  In fact, it's very very good.

My response to Bennett's conversation with me several months ago, when he told me he sometimes wishes that he hadn't been born was, "Bennett, I would rather have you here, even if you had to have CF and dyslexia, than to not have you here at all."

And that is true.  But if I could go back to that moment, I would add, "Bennett, how grateful I am that you were born and you are here.  My life is significantly enriched because of you."

Accountable Kids

When I decided last Spring to homeschool (aka be home with my kids all day), one thing I quickly recognized that I needed was I needed a plan...a very very good plan.

I started by asking myself: how do schools survive??  Certainly schools must have a secret I can incorporate at home?  How did I once survive as a teacher with 30 kids all day everyday?  Then, I remembered - they survive because have very predictable systems and regular schedules.

So, I started making charts and lists and started reevaluating our systems at home.

This summer, the kids were driving me crazy daily asking, "what's for lunch?!"  So, I created a standard list on the fridge.

The kids were needing my attention constantly saying, "I can't open this!"  So, I stopped, sat down and taught them how.

The kids constantly begged me for more time on their iPads, so we bought Disney's Circle so the system just turns off the internet after a designated amount of time.

But, despite those changes, I kept running into the issue of: how do I help my kids take responsibility for themselves?  How do I get this entire house working in such a way that everything doesn't always revolve around me?

After asking this question in a homeschooling Facebook group, I learned of a really great chore chart/accountability system called "Accountable Kids."  This is the youtube video that actually convinced me to try it: https://www.youtube.com/watch?v=kb2xZrhkLyE


 
The way Accountable Kids works is that each child is given their own wooden board with pegs and a set of cards.  


On the child's board hangs the child's cards - things they have to do each day. The cards are divided up by time of day (morning, day, evening, for example).  The cards (or chores) are determined by you, the parent.

Whenever the child completes a chore, they turn over a card from the far left peg to the one on it's right.  Once all the cards for a specific time period is complete, they can ask for a ticket (tickets hang on the middle peg).  A ticket can be used for a set of predetermined privileges (for us, it's 30 minutes of iPad/tv/game time).


If the child gets all of their tickets each day (we allow 3 per day), they get a star at the end of the day. After collecting a card worth of stars (10 total), they get to have a special one-on-one date time with Mom or Dad.

The system also allows for the earning of money for chores and for a weekly focus of one behavior the parent/child wants to modify (for us it was hitting for Avonlea, persevering for Oliver and using a respectful voice for Bennett).


In addition to cards like, "Brush your teeth" and "Make your bed," blank cards are provided.  I really appreciated this because I am trying to help Bennett be more responsible for his own CF care such as putting on his Vest and taking his twice-daily medications.  So, in the picture above, I made cards for Bennett's morning treatments and his afternoon treatments (pay no attention to my hand drawn lungs - ha!).  Even if Bennett can't do something all by himself, it's nice when he prompts me to come help him.  Not only does it make Bennett feel proud of himself, it actually helps me as his parent be more adherent to his medical care.  It can be easy to miss a set of meds on a busy day.  But when Bennett can't get iPad time without turning over his cards, he will ask me for his meds.


I didn't love the look of the wooden boards as is.  The system suggests that you allow the kids to decorate their own boards so they can have more ownership.  But, considering the art skills of my children and considering you're also supposed to hang the boards in a common area, I decided not to follow that recommendation.  Instead, I painted them cream so they would blend in with our decor, which made them turn out surprisingly nice.  Per another mama's recommendation, I hung them on the wall using easily removable velcro stripes as not to create any permanent holes in the wall.


I have to say, this system has been really wonderful - the most sustainable chore chart I've ever seen.   It has a lot of moving parts, particularly at first.  But, it also feels rewarding.  The kids are demonstrating a significantly more amount of independence.  I do significantly less nagging and monitoring.  Motivation is inherent into the system and it works very naturally.

The first few weeks were hardest for Oliver (9).  He doesn't like change, in general.  And he certainly didn't like the idea he now had to earn his iPad time.  But the other two (ages 7 and 3) seemed to love it, particularly Avonlea, who felt very proud of herself.  After four months of using the system, the entire family has been very happy with it.


This system has prompted many changes to take place in our family.  But the most surprising change has been in our parenting.

Before Accountable Kids, we didn't realize how much we gave our kids without asking them to work.  When Brian and I had to come up with a list of rewards for the kids, we began to find that task to be difficult.  Ice cream dates, trips to the swimming pool, candy, movies, a playdate, lunch a Chick-fil-a...all of these things have never really been "earned" by our kids.  In fact, they were things we've used to simply entertain them.  They've been our baseline activities.  And, on one level, I think that's ok.  But, without some type of positive reward of some sort, kids won't stay motivated to participate in the chores of caring for themselves or our home..

So, we determined pretty early in to the Accountable Kids system that in order to create these things as rewards, we had to really cut back on these activities.  We needed to get our children hungry for opportunities again.

While Brian and I know the cost of a gift or activity, our children, quite naturally, did not know...mainly because we had never taught them the cost.  They had never really been asked to give up anything in order to get what they want.  *We* had to earn the money for the ice cream.  *We* had to take the time away from other things to drive them there.  But they hadn't given up anything.  So, they're response to what we had sacrificed on their behalf could sometimes come off as being ungrateful, even though they weren't meaning to be.  I have realized with Accountable Kids that really, their behavior in these situation isn't as much their fault as it is ours.  We needed to teach them the cost of things by giving them a way to earn them.  Inherently, by earning opportunities, they become much more grateful and recognize the gift they are being given.

We aren't always successful with this program. But this process has made us slow down and restrict our own activities.  I can't as easily entertain the kids or even pick up food on the way home.  Now, I have to differentiate that some things are the regular things we do but many more things are things that have to be earned.  The beauty of it is that now the ice cream date is much more special to them.  And they are much more appreciative of a new toy.  I think this system teaches them their own power in the world.  With hard work, things they want can be earned.

This system asks as much from me as the kids.  But, because of it, Brian and I feel we have more helpful, more grateful and more balanced kids.  This is imperative when it comes to being home with your children all day.  Especially if you actually want to like them. :)

10 Things I've Been Surprised About Regarding Homeschooling


I've been quiet on the blog lately for several reasons... 

The first reason is because Brian is working really hard.  His new job is taking up a tremendous amount of his time right now, which has laid much of the home care and parenting responsibilities on my shoulders.  We hope for a better work-family balance soon.  But, for the short term, I am having to be very present in our family's life right now.  The second reason is because I am homeschooling the boys, which has enveloped a good portion of my free time.  How's that's workin' out for me, you might ask?  Well, it's hard.  At times, it's lonely.  But, ultimately, I think it's very good.

It took that entire first year after Bennett was born before I could fully grasp this new CF journey I had just been placed on.  I think this first year of homeschooling might be the same way.  We've been homeschooling since May so we're 6 months in to it and while I don't quite feel like I've hit my baseline mastery mark, I continue to feel increasingly confident of where we are and what we are doing.  I have much to learn but I also feel like I've learned a lot.  In fact, I thought it might make sense for me to list some of the new things I've learned so far in our homeschooling journey for me to read again at some point down the road.  

Here's my list of "Ten Thing I've Been Surprised About Regarding Homeschooling":

1.) What I've lost in kid-free time, I've gained in quality time with my kids.
Now that the boys are at home all day (Avonlea goes to Pre-K in the mornings), I have less time to myself and less time to do work that I need to do.  This is definitely challenging.  I am having to be very creative in creating "me" space.  But, I have been pleasantly surprised with homeschooling that what I've lost in kid-free time, I have actually gained back in quality time with the kids.  Our family is having more downtime together, more conversation together and more natural connection than we've ever had before.  That's a pretty neat trade-off.

2.) There's no wrong way to homeschool.
I've yet to find two people who homeschool for the same reasons and use all of the same educational/pedagogical methods.  Homeschooling is as individual as the child being taught and the parent teaching it.  I've been pleased to have learned along the way that: as long as the child is being taught in a way that meets the child's needs, there is simply no wrong way to homeschool.  As Maria Montessori advocated: trust the child.


3.) Homeschooling has made me even prouder of my children and has made me even more confident they are ok.
Like any mother should be, I'm very proud of the little people God has entrusted me to care for.  But, as I have worked with them on schoolwork more intensely, I've gained an even greater sense of pride in them.  Dyslexia is difficult to overcome.  I see them working really hard.  I see them get very frustrated.  I see them persevere.  I see them fail.  I see them succeed.  I see them incorporate what they have learned on one day to a totally different situation the next.  And I am even more in awe of who they are as potential adults.  In this same vein, I've become even more reassured that they are going to be ok.  Sometimes, when a child doesn't fit into a system's way of doing things, it can be anxiety producing for the parent.  Am I doing everything I can for my child?  Are they behind in an area?  Will they catch up?  Is something wrong with him/her?  Is there something wrong with me??  Homeschooling has allowed me to step away from blanket expectations and instead embrace the totality of my child's strengths and weaknesses.


Learning about aquaponics

4.) In homeschooling, the whole world becomes the classroom.
This is probably my single most personally surprising moment I've had so far when it comes to homeschooling.  It was when I accepted the sole responsibility of being my child's educator that I suddenly recognized the wealth of resources our community provides.  The library, the grocery store, an Army base museum an hour away, the public works office, our neighbor, our friend who is a lawyer - all of them suddenly became experts and field trips and rich learning opportunities.  This is probably also the single most fun part of homeschooling, as well.  I get to learn and explore our community along with the children.  The whole world has become our classroom.  It has always been this way. But I think, having the kids at school, I've just never really saw the same value in these resources like I do now.  So, that's pretty cool.

Meeting other kids at Yoga

5.) "Socialization" is a non-issue.
I began our homeschool journey fearing the same stereotype of the disconnected disengaged homeschool child that many people have. Thankfully, as I've met homeschooling families and learned everything I can get my hands on regarding homeschooling, I've come to see this stereotype isn't true.  We live in a very transmigritive super connected technologically-enhanced world.  Socialization happens in almost every part of our living experience.  Families move in and move out of their communities.  Activities are joined and dropped regularly.  Children make friends at church, at the playground, at the library, in sports leagues, in after-school art classes.  Potential friendships lurk everywhere.  Oliver and Bennett are in more self-chosen activities now than they were in while they were at school because we've been able to organize our time around them easier. 

6.) Texas is referred to as "homeschool heaven."
There are no rules for homeschoolers in Texas.  State law treats homeschools like private schools.  In Texas, private schools have no oversight by the state.  Therefore, homeschoolers can learn what they want...when they want...how they want.  This is not the same in every state.  I have loved not having to deal with bureaucracy when it comes to teaching my kiddos so I am grateful to be a Texan.


Learning about baby kittens

7.) If it's important to learn at all. it's part of our curriculum.
I've been pleasantly surprised to find homeschooling has allowed me more time to teach the children to be independent at home, how to be kind, how to cook, how to care for neighbors, how to make their beds and care for their things, how to manage time, etc.  These are things I was already doing while the children were in school but I constantly felt I never had enough time to teach them well.  I've been pleasantly surprised that what I want to teach my children at home no longer feels like it conflicts or is in any way at odds with what they are learning at school.  Generous open-ended playtime isn't at risk by rigid homework expectations.  And difficulty with mastering educational concepts now have the opportunity to be taught and reinforced in many different ways throughout the day, well beyond the designated school time.  This makes my job as a parent and as a teacher significantly easier.

8.)  Normal people do homeschool (awkward people do too).
I'm not gonna lie.  When I first seriously began considering the idea of homeschooling last year, I told my therapist through tears one of my greatest personal hesitations, "...but I don't want to be friends with the homeschool moms."  She smiled and reassured me, "you don't have to be friends with the homeschool moms."  I knew it was a silly statement even when I said it.  But it was true.  One of the biggest fears I've had about educating my children at home has been finding mama friends that I like who do the same.  So many of my friends have come from meeting during activities involving my children, particularly at school.  So, early on, I was a bit fearful that I might not find my tribe.  To my therapist's point, friendships aren't limited to where/how a child is educated.  And I have found this is to be true.  I may have to be a bit more intentional about my friendships but they continue.  In addition, I've met some really sweet mamas who homeschool - some are like me, some are not - but all who have been good people whom I'm ultimately glad to know.  This process has forced me to be more open to making mama friendships beyond the schoolyard.

Multi-sensor writing lesson

9.) There are no long-term commitments in homeschooling.

Another fear of mine regarding homeschooling was making the decision on how long to homeschool. The great thing I learned from books and speaking to friends, administrators and educators is that there is no long-term commitment with homeschooling. How long we homeschool is completely up to us.  It can start in the middle of the year and we can end in the middle of the year. I can put my kids back in school at any time.  I can homeschool for a year...or for 8 years.  I can homeschool one child...or all three.  I can homeschool rigidly...or loosely...with this curriculum or that one...whatever make sense for the child.  The only commitment I make is that which I am doing in the present.

Homeschool Mechanical Engineering class
10.) I like sending my kids to school.  I also like homeschooling. 
I really like sending my kids to school.  I like the idea of school.  I like buying new school backpacks.  I like the handmade projects.  I like the classroom parties.  I like school pictures.  I have also been surprised to learn that I also really like homeschooling.  I like the freedom it gives.  I like the seamless connection between home and school.  I like the good relationships I'm building with my kids.  I like the confidence I have that their educational and emotional growth.  I like visiting empty parks and museums during the school day!  I really like sending my kids to school.  But I also really like homeschooling.