15 December 2017

"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 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."

20 October 2017

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:

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. :)

24 September 2017

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 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.

02 September 2017

CF Clinic: Update on Bennett

It's been about six months since Bennett was last in the hospital.  So, I thought I'd provide an update on how he is doing health wise.  Overall the report is that he is doing very very well.  Bennett's bowel issues resolved completely.  It's as though nothing ever happened.  In addition, Bennett's appetite and energy are very good and he feels and looks great!

Bennett had his regular quarterly CF Clinic appointment on Thursday.  This is when we met with Bennett's Pulmonologist and GI doctor as well as the rest of his team (respiratory therapist, social worker, nutritionist, etc.)

To my surprise, Bennett's PFTs (pulmonary lung function test) was lower than usual (at 89% versus 100%), which was mildly concerning.  He is showing no respiratory symptoms and his lungs sound clear but a chest X-ray shows some inflammation in his lungs typical of CF.  So, Bennett's pulmonologist believes his lower lung capacity numbers is likely due to an overgrowth of MSSA (Methicillin-Sensitive Staphylococcus Areus).  MSSA, which is tremendously common in the lungs of those with CF, doesn't typically cause symptoms...but it can.

So, Bennett will go on a round of oral antibiotics in hopes we can get it under control.  We will come back in 3 months as planned and retest his PFT to see if oral antibiotics have made any improvement.

Our GI doctor is still very anxious to get Bennett's weight up for fear his low weight is stunting his height.  Although Bennett did gain 2 pounds in the last 3 months, we need him to gain another 8-10 pounds.  I will continue trying to get him tube-fed at home more often.  Night-time feeds have become completely disruptive to Bennett and my sleep so now we're looking to maximize his day-time feeds, which is hard when he prefers to eat by mouth.  I feel like Bennett is always either eating or doing treatments.  Nonetheless, we'll find a way.

One thing I want to brag on our CF clinic for that I learned about during this most recent visit is the addition of a Physical Therapist to our team.  I am super excited about the addition of a Physical Therapist to our CF team because she will be particularly mindful of ways of incorporating exercise and physical therapy in Bennett's care, something the CF community has known anecdotally benefits those with CF and now are starting to have research to back up.

At our next CF visit in November, Bennett will undergo a DEXA bone scan (something the CFF recommends starting at age 8).  I suspect the scan will show osteoporosis or something similar due to his being chronically underweight and having a lifetime of GI issues.  If the scan does show lack of strong bones, we'll continue to find ways to improve his nutritional status and likely begin a Physical Therapy routine at home or outpatient to maximize his current bone and muscular structure as well as lung health.  

So much of CF care right now is preventative and proactive in anticipation of deteriorating lung health, most active in adulthood.  I am so so very hopeful that in a few years Bennett can get a medication that will slow down this lung deterioration process and give us some more time.  It's so hard to consistently worry about Bennett's health, even when he's doing really really well.

22 August 2017

First Day of School 2017

These pictures officially mark the First Day of School 2017.  But, the reality is we've been doing school with the boys all summer.  Considering I'm a strong proponent of year-round school, we decided to start homeschooling as soon as the boys ended school last May.  (Avonlea, however, started Pre-K at her same school this week.)

First Day of Pre-Kindergarten (4 years old) 

First Day of 2nd Grade (7 years old)

First Day of 4th Grade (9 years old)

Since we've been homeschooling for several months now, I can share that homeschooling the boys has been going really well.  We typically spend only about 2-3 hours of active learning during the day.  The rest of the day is spend passively learning through play, field trips and self-discovery.

For those who are interested, our math curriculum is Math-U-See (a popular homeschool math curriculum, especially for children with dyslexia) and Barton Reading and Spelling (another excellent curriculum for students with dyslexia).

Working with neurodivergent children, such as those with dyslexia, takes a lot of patience and a true openness to learn alongside them.  Daily, the boys and I are challenged to find unique ways to help them master their learning goals. I am consistently amazed at how the brain works and find myself in awe of the boys' perseverance when they face difficulties working with written language.

Homeschool is definitely a huge shift for our family.  But, so far, we all really like it, particularly the flexibility!  One of my favorite things might be that I don't have to make school lunches this year!

(Click here to see "First Day of School Pictures" for 20162015201420132012 and 2011.)

06 August 2017

Avonlea's 4th Birthday

On July 25th, the baby of our family, Avonlea, turned 4 years old.  To celebrate, we invited four little girls over for a "My Little Pony" themed birthday party.  Avonlea's favorite toys these days are her "My Little Ponies" so this was a very meaningful fun theme for all of us.  Of course, it was even more special since I loved "My Little Pony" when I was a little girl back in the 1980's.  

Along with cake, we had "Pinkie Pie's Pink Lemonade", "Fluttershy's butterfly gummies", "Twilight Sparkle's Sprinkle Cookies," "Scootaloo's Skittles" and "Pretzel's Chocolate Pretzels." (In case you're not an avid "My Little Pony" fan, these are the names of each of the characters.)

Avonlea was SO excited for her birthday this year.  She loved every part of the party-theme and party-planning process and getting to host her friends.

Because pretend play is always fun when you're four, I made each of the girls little felt pony ears and pony tails to wear.  Each child was a different pony.  Avonlea's favorite pony is "Pinkie Pie" (pink).  But we also had "Twilight Sparkle" (purple), "Rainbow Dash" (rainbow), "Rarity" (dark purple+light purple) and "Apple Jack" (yellow).

The first activity that the girls enjoyed at the party was stringing Pony Beads together to make friendship bracelets.  I was surprised by how long this activity kept the girls' attention.  They seemed to really loved this.

Aunt Brooklyn helped a few of them get started.

Showing off their creations.

After making friendship bracelets, we played a version of "Pin the Tail on the Donkey" but played "Stick the Cutie Mark on the Pinkie Pie."  "Cutie marks" are the little graphics that each of the "My Little Ponies" wear on their back legs.

It's hard to believe our tiny tot is now 4.  Avonlea is full of sugar and spice and everything nice.  She loves pink, twirling in dresses and playing with dolls.  She also loves dress up, princesses, singing and dancing.  She is very independent, inquisitive and articulate.  She calls her brothers "my boys."  Bennett is her everyday playmate.  Oliver is her always protector.  She loved blowing out her candle!

Avonlea received so many fun gifts for her birthday.  But one of the sweetest gifts I can't help but mention is one given to her on behalf of my mother's dear friend.  (Pictured: Avonlea in the lap of my mom and her grandmother, affectionately called "Mumsy," holding the gift).  

My mom's friend, Christina ("Critty") Fairback, recently heard that Avonlea was having a "My Little Pony" themed birthday.  So, being friends with the "My Little Pony" creator, Critty decided to purchase a card and ask her friend, Bonnie, to sign it in order to send to Avonlea.  

I just might have squealed a bit myself when I opened the card.  The card reads: 

"Avonlea, I made "My Little Pony" years ago, just for little girls such as yourself.  Happy Birthday and Remember...Friendship is Magic! -Bonnie Zacherele."

Bonnie Zacherele is the woman who created "My Little Pony."  She created My Little Pony (which was first called, "My Pretty Pony") as a part of her job as a toy creator/illustrator at Hasbro in the early 1980s.  (The story behind My Little Pony is fascinating.  Click HERE to listen to the story of "My Little Pony" from Bonnie herself. And click HERE to learn more about how "My Little Pony" evolved to what it is today.)  

This card is SUCH a treasure to Avonlea and, frankly, to our whole family (who, at this point, are all fans of the toys/show).  What a sweet lady Bonnie is for doing this for Avonlea and what a sweet friend Critty is to ask Bonnie to do this for her.  It's hard to believe that an idea that came from the imagination and heart from a woman's own love for horses could become such a sustainable and well-loved toy that brings such joy to little girls like Avonlea 30 years later.  Thank you, Bonnie and Critty, for such a very meaningful gift that we are sure to always keep!!!

Avonlea, we are thankful for the gift God gave us in you!  We've loved every one of your 4 trips around the sun!  Can't wait for many more!

18 July 2017

Bennett's Stage Debut

This past week Bennett was the center of attention...but, for the first time in a long time, it wasn't for CF:  On Saturday, Bennett made his theatrical debut in his first on-stage community play.

Three pups: A dalmatian (Bennett), a chihuahua and a scottish terrier (our friend Hudson on the end)

Bennett, along with a crew of 50+ kids (ages 7-15), attended theatre camp put on by the Waco Independent School District Theatre Department.  At the end of 5 full days of practicing, dancing and making their own costumes, the kids put on two community performances of "Disney's 101 Dalmatians Kids."  The show was incredibly adorable!

Each child who participated in the camp had a role in the play.  Most kids, like Bennett, were part of the ensemble of Dalmatian puppies.  Some children tried out for speaking roles a few weeks before the camp started (I found out about the camp too late for Bennett to try out). Bennett was hesitant at the beginning of the summer of doing any camps without his brother to be there with him.  But as the summer moved along, Bennett's confidence begin to build.  When I found out about this camp, Bennett agreed he was ready to try something new and all by himself.  

Bennett is on the far right.
Brian and I knew, without a doubt, that Bennett would love theatre camp.  Bennett is incredibly playful, loves to dress up, enjoys making people laugh, has a naturally comedic sense to him and enjoys singing.  

The wonderful thing is we were right.  Bennett did love it.  Bennett even won an award at camp for having the best puppy dog face.  He took the role very seriously. :) 

While I was very excited for Bennett to have a chance to try something new that I knew he would love, I definitely felt anxious.  The camp took very good care of Bennett.  But, more than ever before, Bennett had to remember to take his own CF medicine when he ate several meals at camp (he was mainly good at that).  And, he had to navigate experiences of reading, such as the words to music, despite that his dyslexia prevents him from reading independently just yet.  Despite these challenges, he did great!  And even more fantastic than that, Bennett's past bowel issues were NON ISSUES!  What a huge gift to be able to just enjoy camp without having to be reminded of CF!  

Bennett made lots of sweet friends at Theatre Camp, including one of the older kids, Ellie, who played the lead role of Cruella de Vil.  Bennett loved being around Ellie.  She made him feel really special.

Bennett also really loved hanging out with his friend from church, Syler, who is a few years older than Bennett and took him under his wing during the week.  Syler, a natural-born leader, won an award at camp for being most helpful to the other actors, particularly the younger ones.  

We are grateful to our sweet little friends, Adela and her little brother Gus, who came out to see Bennett in the play.  For me, as his mama, watching Bennett have fun on stage was really enjoyable but watching him doing it while knowing he is healthy was even more gratifying.

Maybe there be many more CF-free curtain calls for you, Bennett! Bravo!

30 June 2017

Dear Board Certified Doc, Thank You.

There are quite a few things I haven't yet shared about on the blog that I'm looking forward to sharing soon.  Bennett's issues have taken so much attention this year that, until recently, I hadn't had the emotional energy to post them.  But as Bennett's health continues to do well, life is much more balanced for me and now I can once again excitedly sharing several projects I've been a part of for some time.  This is one of them:

The American Board of Pediatrics is based in Chapel Hill, NC
Last year, I was invited to participate in some patient advocacy work with the American Board of Pediatrics.  The American Board of Pediatrics has recently taken steps towards incorporating more patient and family voices in its work.  As a part of that process, I was among a group of parents of pediatric patients invited to provide feedback to the American Board of Pediatrics and to gain greater understanding of the pediatric board certification process.

Growing up as a daughter of a board certified family physician, I've always felt that board certification was important.  I've also always known that board certification takes a lot of effort. I grew up having seen my dad, at times throughout his career, take time away from our family to further educate himself and pass his board certification exams.

But, beyond that, I had never given board certification any other thought, not as my role as a parent and not as my role as a parent of a child with chronic medical needs...that is, until I was invited to participate in some of the work going on at the American Board of Pediatrics.

It was during my work at the American Board of Pediatrics that I learned more about the board certification process and about what doctors (most specifically pediatricians) go through as an effort to give their patients the best care possible.

Patients and Families Meeting Attendees and some ABP staff at the American Board of Pediatrics

I remember when Brian and I first chose a pediatrician.  I was pregnant with our firstborn Oliver.  I had just moved to town so I used the recommendation of my dear friend Chelsea.  It turns out he was a great pediatrician.  However, I never once thought to find out if my doctor was board certified.

Years later when choosing specialists for Bennett's CF care, I never once questioned whether his doctors were board certified.  Why would I?  I just assumed they were...they have to be, right?!

To my surprise, what I learned at the American Board of Pediatrics Patients and Families Meeting is that, although all doctors have to be licensed by law, not all doctors have to be board certified.

When doctors graduate from medical school and residency, they must apply for a state license.  Once they are licensed, they are considered to be able to practice medicine for as long as they do not get their license revoked.

Board certified doctors, however, are those who already have a license but have gone further.  They are those doctors who, on top of being licensed with the state, have demonstrated competencies in several areas by way of studying and taking exams as presented to them by their board certifying body.

There are many board certifying bodies out there:  The American Board of Pediatrics certifies doctors in pediatrics and pediatric subspecialties.  The American Board of Internal Medicine certifies doctors in Internal Medicine (the care of adults) and related subspecialties.  Subspecialists such as pulmonologists (CF docs, for example) have received additional training in pulmonary medicine (either pediatric or adult) and are certified by either the American Board of Pediatrics or the American Board of Internal Medicine, depending on training.

As soon as I learned of the distinction between licensed doctors and board certified doctors, I went right to the American Board of Pediatrics' website to check to see if my children's doctors are Board Certified.  Thankfully, they all are.

I feel a bit of relief knowing that the doctors who care for Oliver, Bennett and Avonlea are board certified because board certification demonstrates that my children's doctors have spent extra time and resources to stay current in medicine and desire to provide the best quality patient care.  

The definition of a "good" doctor (other than that they do no harm) tends to be preferentially individual.  But what I appreciate most about the difference between a licensed doctor and a board certified doctor is that a certified doctor is held to higher standards in accountability and is required to regularly demonstrate he/she has furthered their medical education.  Most certainly, a licensed doctor may continue learning but there is no accountability to make sure they are.

While physicians who regularly take tests on new medical information can benefit patients, I don't believe it's just board certification knowledge that is important.  I think the benefit is beyond that. The value is in the process.

Learning doesn't happen by demonstrating that you know a fact once.  It happens when you repeatedly submit to a discipline over and over again and you are shaped in such a way that you naturally respond, without thinking, to certain events.

When my children's doctors become board certified, they indicate to me that they have chosen to seek continued education...chosen to participate in a community of doctors before him, with him and beyond him that are making the commitment to do the same thing...and are being formed by that process.

Board certification can be costly.  Many hospital systems don't pay for their doctors to take their boards so doctors themselves must pay for it out of pocket.  And board certification is not easy.  Board certification requires doctors take time away from their work and their family to study for their boards. The cost and time burden of board certification can be challenging considering many doctors are already overwhelmed by preauthorizations and electronic health record paperwork. Knowing this only makes me more grateful to the board certified doctors in our life who make so they can provide high quality care to my family.

Considering that board certification is a hot healthcare topic among doctors right now, I'm of the opinion that patients and families should know more about the topic of board certification so they too can join the discussion, for it's their health that is on the line.

In an effort to educate other parents about board certification, I recently shared my personal views on a video for, a website created for parents by the American Board of Pediatrics.  To watch the video, click here.

My having learned the value of board certification makes me even more appreciate all the extra time and money given on our behalf to improve patient care.

If you're a board certified doc, thank you!