Diving into the Deep End

THE WONDERFUL WORLD OF WATER PLAY

This summer was the summer of water recreation.  We couldn’t get enough of it; mostly because we were so deprived of it the summer before.  Brady had an NG feeding tube the summer of 2012 from May – July, then a PEG G-tube insertion from July – November.  He had his mic-key button surgery in November which allowed his world to open up to the wonderful world of water sports.

When the summer of 2013 came around, we were ready.  We were more than ready as we had our first beach vacation scheduled for mid-June, a new inflatable pool for the backyard, and swim lessons scheduled for July.  It sort of felt like we were taking back control over our lives.  This disease, the setbacks, the inconveniences of life with EoE, and feeding tube were no longer going to rule.  We were back.  And it felt good.

Brady's first time in the new inflatable backyard pool



Sydney's first time in the new inflatable backyard pool



 

TADPOLES

I enrolled Brady (age 5) and his little sister, Sydney (age 3), for their first swim lessons.  They were both in the “Tadpoles” class for ages 3-6 beginner swimmers.  The first day of swim lessons brought anxiety and excitement.  To be truly honest, it was mostly nerves for me.  Sydney I wasn’t as worried about as I saw her take quite easily to the pool earlier in the summer.  For Brady, it was a different story.  Water = sensory.  Brady doesn’t do well with getting his face wet and my biggest fear was around him accidentally getting water in his mouth, or even worse, swallowing a bunch of water at one time.  That simple act could easily send Brady into a fit of coughing and inevitably, vomiting.  From there it could be a downhill spiral with Brady becoming afraid of swim lessons or the pool.  I was clearly getting ahead of myself, but it seems a mama’s worry never goes away, no matter how hard I fight against it.

It came as no surprise when the first class started and Sydney immediately jumped in and did all the instructed activities.  Her smile was infectious as she laughed and giggled her way through each activity.  I looked over to where Brady sat on the side of the pool, unsure of himself, and even more unsure of the water.  He looked pretty miserable as the instructor guided him around the pool as he halfheartedly kicked his feet.  It’s in these moments I try to push away the sadness that threatens to overcome me.  It’s sometimes hard to see one child, the younger one at that, flourish and shine in an activity, while the other more mature child struggles.

  

Brady not enjoying the kicking activity at swim lessons

Brady doing much better with kicking in shallow waters

I know that some kids just enjoy the water more than others, and that could very easily be the case here.  But sometimes I wonder if some of Brady’s struggles are the side effects of this crazy EoE disease.  Interestingly enough, Brady seemed to become more comfortable with the pool with each passing swim lesson.  Sydney, on the other hand, declined going down the “big” water slide and trying out the diving board.  Brady tried it all and I was so proud of him by the end of the two-week class.  Neither child was brave enough to go under the water just yet.  There’s always the summer of 2014 to look forward to more underwater adventures.

Sydney and  Brady loving pool time

Sydney loving pool time... our water girl.

REVELATION

As Brady and Sydney progressed through their two-week swim lesson class, I began thinking about how far Brady has come in just a little over a year with a feeding tube.  I suppose with all the water activity we participated in the past few months, Brady’s mic-key button was front and center.  It’s not that I ever forget that he has a feeding tube, more like “out of sight, out of mind” some days.   While Brady was at the pool, splash pad, or playing in the sprinkler this summer, the mic-key button was exposed and it made me think.  It’s become such a part of him and a part of who he is.  I’ve given so much thought to how the feeding tube has truly changed our lives.

DIVING INTO THE DEEP END

                          

It was not long ago, April 2012 to be exact, that my husband and I were faced with the heartbreaking decision to move forward with a feeding tube.  It felt exactly like diving into the deep end.  At night.  With a blind fold.  A total free fall that felt out of control and full of fear.  The water was cold and uninviting and I wasn’t sure if I would ever warm up.  After the NG tube insertion, we went through some pretty dark days as we adjusted to medical supplies, nighttime feeds, and the inevitable, tortuous reinsertions.   My husband and I learned to tread water very quickly, although there was a lot of exhaustion involved.

Brady braving the deep end




Okay, so technically Brady didn't jump into the deep end.  But he was brave enough to be passed down into the deep end.  Baby steps.

  COMING UP FOR AIR

By the time we reached Brady’s PEG g-tube surgery in July 2012, it felt a bit like that moment when you take that flying leap of the high dive and there’s no turning back.  Perhaps it was because of all the training we had with the NG tube that we were able to come up for air much faster this time and catch our breath.  Yes, it was a transition, but the PEG g-tube made Brady’s life much easier and more normal.  Whatever “normal” is. 

This time also marked a sense of calm with the realization that we were headed in the right direction with weight gain and tolerance of both nighttime and bolus feeds.  This also marked a time in this journey where it felt that the worst was behind us because for so long we had fought against a feeding tube insertion.  We had all survived the NG tube, the PEG g-tube and mic-key button surgeries.  Check, check and check. 

PERFECT 10

Now that Brady has had a feeding tube for 14 months, we have seen HUGE progress.  In fact, in just a year’s time Brady gained 10 pounds. Our perfect, hard-fought perfect 10.  This 10-pound gain felt nothing short of miraculous as Brady has always had a difficult time gaining weight from birth up until the feeding tube.

I’ll admit, I was a skeptic in the beginning.  I had many mother’s of children with EoE or feeding tubes reach out and say they have never regretted their decision for a feeding tube insertion.  And now I can happily say that I too, am one of those people with absolutely no regrets.  I’m a believer.  This transformation in Brady over just a years’ time is undeniably extraordinary.

It was not long ago that I would hug him, hold him and love on him and I could feel fear squeeze my heart as I felt his bones protruding through his skin.  Now when I hug my little boy, I feel substance. I feel the meat on his bones.  I feel relief.  I feel success.

My husband and I decided Brady's hard work and accomplishment of weight gain would never go unnoticed.  When Brady hit the 40-pound milestone, we threw him a "40 Pound Party", candles and all.  I was overcome with joy as I saw Brady blow out his 40 Pound candles and make his wish.  (I know what my wish is for him and for the many kids surviving with EoE.)  

40 Pound Party!

Brady making his wish.

Brady is now up to 41 pounds, up 13 pounds from his initial feeding tube insertion in April 2012.  He’s grown several inches as well.  He looks like a totally different boy to me, especially with his cheeks filled out with a beautiful smile that I cherish.  He actually LIKES his mic-key button.  He’s quite proud of it and will show it off to anyone who asks.  Brady is happy, despite this horrible disease and life-changing events that has come across his young path.  He’s happy.  And that alone helps me to deal a little bit better.



Brady showing off his mic-key button at the beach

There's that smile.

UNCHARTERED WATERS

Someone asked me the other day how long Brady will have his feeding tube.  Like most families dealing with and struggling with EoE, this is unchartered waters.  We have no idea how long he will need the feeding tube for.  Our hope is to get Brady to eat his safe foods and eventually become less dependent on the caloric intake from his feeding tube.  For now, especially with the success of the tube, it’s sticking around for a while.  And that’s okay.  Brady is growing and has finally outgrown clothes he has been in for almost two years.  This mama is quite excited about school clothes shopping this year. 

I’m just grateful we took that giant leap of faith and dove into the deep end.

 

They're just apples!

THE PREDICAMENT

Last week I had my first real experience of being judged by another mom for food choices I have to make for my son with EoE.  I have read so many other versions of this experience by other mom’s sharing their stories on FaceBook and blogs.  I knew it was bound to happen eventually.

It’s that moment when the other person realizes that something might be different with my child and then I’m faced with the predicament… to explain or not to explain.   Should I go into some elevator speech (that I have not quite perfected) about how my son has many food allergies, has a rare disease called Eosinophilic Esophagitus, and that he has a feeding tube to supply most of his caloric needs?  Or just let it go, simply say he can’t eat that, and quickly move on? 

Inevitably, if I go down the elevator speech route, the person will look at me or my son with that “poor you” look and TRY to sympathize, even though they don’t have a clue as to what we go through everyday of our lives, nor do they really want to.  Or, they will try to almost physically remove themselves from the little “situation” they have gotten themselves into by having to listen to a mom with a child with special needs drone on and on and on about their woes.  It’s on the rare occasion that someone outside of my normal social circle will truly try to get it and truly listen and truly try to understand.  It’s on these occasions that I feel a sort of triumph that someone listened and may help me raise awareness and not get all “judge-y” on me.  

FIELD OF DREAMS

About a month ago, my husband and I were overjoyed with our first foray into a life resembling normalcy when we signed our five year old son up for t-ball.  This was Brady’s first time being on any sort of team activity and his first crack at trying out baseball.  The first day of practice I may have gone overboard by making Brady pose for entirely way too many pictures before he and Coach Daddy headed off to the baseball diamond. 



Brady's first t-ball practice

Brady's "mean" face

Sweet Brady boy

My husband and I were simply elated that Brady was getting a chance to do something “normal” that didn’t have anything to do with food and he could escape to his field of dreams, and ours for that matter.  He loved his first practice!  Brady was quite impressed with his new baseball cleats and making “smoke” in the dirt of the field.  He was also quite impressive at picking up sticks and drawing in the infield while his teammates took their turn at bat.  Classic.  The baseball diamond is also right beside a railroad track and Brady (and the rest of his teammates) were quite ecstatic with each passing train sending practice into a halt until the train completely passed by.  Welcome to t-ball practice for kids between the ages of 4 and 5.  I loved every minute of it.



Brady making "smoke" running to home base



SNACK TIME

Once the team had practiced a few times, the coach handed out a sign-up sheet for each parent to bring snacks for each game.  Uh oh.  So much for our food-free activity.  However, I didn’t get upset.  This is just a part of life that we have to deal with that looks a little different for our son.  Most kids are so excited for snack time to arrive.  I know, because my daughter is one of them.  Snack time for Brady?  Well, he hates it.  It means he has to stop what he is doing to sit down and watch other kids eat their snack.  Not only does Brady have EoE, but he has a severe feeding sensory disorder that has only grown worse since having a feeding tube put in a year ago.  Brady would rather have his calories go through his “tubie” than eat.  We don’t even know what his “safe foods” are because we can’t get him to each much of anything. 

So, we do the best we can most days by encouraging him to eat the foods he is willing to put in his mouth.  Right now, we have about 3 foods that he is willing to eat including Goldfish, fries, and cheese crackers.  Technically, most of these foods have ingredients that Brady is allergic to but because he eats so little, we are able to get by without EoE flares due to the med regime Brady is on.



Brady in uniform before his first game



Batter up!

Go, Brady, Go!

THEY’RE JUST APPLES!

Last week, I had a first when a mom got all “judge-y” on me.  It was after Brady’s t-ball game when the mom began passing out snacks to all of the kids.  She had brought apple slices and apple juice.  Brady refuses to try either, even though we have relentlessly tried.  Brady will only drink water and apples are still a scary food for him. 

So, then I was faced with the predicament – to explain or not to explain.  It was busy, I was tired, it was hot, and I was ready to pack up and go home.  I decided to go with the not to explain option.  When she began to hand Brady the apples and apple juice, I politely told her he can’t have those.  Technically, he probably could have them (we don’t know if they are safe or not since Brady won’t try them), but he could have tried. 

My sister was nearby and overheard the conversation.  When the mom looked at me like I had grown three heads after I said, “he can’t have those” the mom then looked at me completely disgusted and retorted, with a bit of an attitude, “They’re just apples!”  My sister then intervened and said again, “Sorry, he can’t have those”.  It was a good thing that she jumped in when she did because I was in a state of shock.  It was a simple statement on her part, but I felt so hurt and embarrassed and angry.  I felt attacked.  I felt judged.  I then went to a dark place.

It was the anger that quickly took hold of me as we left the ball field that night.  Anger at the other mom for being so judgmental.  Anger at myself for not trying to explain better.  And pure anger at EoE and this world that we live in.

What I wouldn’t give for those apples, to be “just apples”.  Those apples are the epitome of our existence.  We’ve been down this long road over and over again fighting for and against food to keep our son alive and as healthy as possible.  This daily struggle with fighting the good fight for my son to try, just try, something new has become exhausting and overwhelming. 

For some kids with EoE and allergies to apples, consuming those “just apples” would be the start of something horrible and unimaginable to parents with kids that don’t have EoE.  The flares, the vomiting, the diarrhea, the stomach cramps, the sleeping, the joint pains, the refusal of food after the flare, hospitalization…  could all be the result of eating “just apples”.

In her defense, I’m sure she didn’t mean anything by her comment.  Trust me, I thought all night and the next few days about what she said which prompted me to write this blog.  I’ve got to think that from her point of view, she thought she was providing a healthy snack to all the kids and my refusal of that snack for my son may have been insulting to her… or something.  I’m not sure.  I just wish she would have left her judgment and attitude home that day.  I don’t need that in my life.  So there, “Judge-y Mom”, how do ya like them apples?

It’s gonna get easier, I know this.  I will get better at reacting.  I will hopefully be able to let the anger go after incidences such as this.  I will perfect my elevator speech.  I will be more mature. 

Brady will start to eat foods someday.  Brady will overcome.  Brady will learn and be willing to partake in snack time. And who knows, maybe he will grow to like apples. 

Oh, how I would love them apples.



Hello again, world! So nice to see you!

I had “a moment” a few weeks ago.  A real, solid moment that brought me tears of joy, relief and a sense of hope.  It was like getting a breath of fresh air when it finally hit me.  I was ready to start living; to really start living again.  Hello world!  So nice to finally see you again!

As I’ve mentioned a time or two before, 2012 was not a great year for my son and for our family.  Now that April 2013 is here and spring is upon us, I’ve realized a few things.  It dawned on me that our family went into lockdown mode last year, without really meaning to.  It just sort of happened. 

Our focus slowly went from living our normal lives to full throttle coping and surviving.  We stopped doing things.  “Things” like traveling, seeing friends, having company over, going for walks, going to the gym, eating at restaurants, going to church.  All of those things that enrich our lives just seemed to go right out the window.  Granted, having two toddlers at home made all of these activities a little tough some days – but having one toddler with a rare disease and feeding tube made most of these activities incredibly difficult, especially for us, the rookie feeding tube caregiver parents.

Brady in April 2012, a few weeks before we got the news he would need to have a feeding tube inserted

Brady getting used to his new life with the NG feeding tube

Suddenly, jumping into a car for a day trip somewhere, anywhere didn’t seem so easy.  Going to visit family and friends with healthy children no longer seemed like fun.  Taking walks or going to the grocery store while toting around a child with a NG tube felt tiresome, especially trying to ignore all the comments and stares.  My husband and I, in a word, were exhausted.  Just full of exhaustion from head to toe from the emotional and mental toll of raising a child with EoE.  We were dealing with the emotional aftermath of watching our son go through his NG tube insertions (May-July 2012), PEG g-tube insertion (July 2012) and lastly, mic-key button insertion (November 2012) all in a matter of six months that was beyond draining.  We lost a lot of our energy to the coping mechanisms that overtook our lives during those months and because of that… we stopped really living. 

Then, couple that exhaustion with keeping up with our everyday lives, including our jobs was taxing.  My husband teaches 7^th grade special education and I work full time in hospital administration.  We both put in long hours and have high-stress, high-energy jobs.  Looking back on it now, I’m not quite sure how we made it through it all, but we did.  And we’re much better, stronger parents now because of it.

Three weeks ago my husband and I received an email from one of our church pastors asking us if we would be willing to host the church spring new member class.  My initial reaction was one thought; can I take on one more thing right now??  My second reaction was one of honor and flattery.  Then… I had my moment.  A moment filled with emotion and the realization that I had been living in a deep, dark hole this past year and I was ready to come out of hiding. 

This has really translated into a wonderful snowball effect.  My husband and I have joined a gym again.  Hurrah!  It feels good to get back into shape.  We have also made a pact with our close friends to get together at least once a month.  My husband and I have also committed to trying to hit one happy hour once a month.  We are planning a trip out to Pennsylvania to see family in April/May and are going on a family beach vacation in June.  My husband and I haven’t been on a vacation in four years and this will be our first family vacation with both of our kids.  We have also started the Disney fund.  Yep, we’re taking the kids to Disney World next spring. 

Through all this planning and socializing this past month, I am once again reminded the lessons we have learned raising a child with EoE.  By going into lockdown mode last year, we probably did the exact opposite of what we should have done.  In times of change, worry and uncertainty, we should have taken the time to reach out to others for support instead of isolating ourselves.  We should have made time for us, a time to be social and to just get away.  We should have carved out more time to take care of ourselves by taking a “break”. 

Now that I’ve had this breakthrough, it feels good to be out there again.  I have so enjoyed seeing family and friends on a more regular basis that it has become oddly therapeutic and refreshing.  Who knew?  It’s been a nice reminder that it’s okay to take a break from it all.  No need to feel guilt – the break makes me a better wife, mother, daughter, sister, and friend.

These important lessons remind me of a quote from one of my favorite movies, The Shawshank Redemption. 

“I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”

It’s been a hell of a ride the past few years, but I’m no longer going to let this disease dictate the way I live or don’t live or the way my family lives or doesn’t live.  Don’t get me wrong, I still have a gut reality check clearly in place.  I know there are still tough days ahead… days of heartache and pain and frustration.  I also know there will be days of joy and triumph and hope and fun!

All I know now is that I’ve got to go… I need to go get busy doing this living thing. 

Me and Brady on his 5th birthday, March 5, 2013



Brady & Sydney at their birthday party

Daddy giving Brady his birthday party bolus






Getting a breath of fresh air...

Brady at an Easter Egg Hunt for special needs kids a few weeks ago

Brady trying out his brand new bike that he got for his birthday

Brady and Sydney on Easter Sunday

This is what living life is all about.  I love being a mom to these two adorable children!  I have loved watching their sibling bond grow stronger with each passing day.

Sibling Rivalry

I hate to make comparisons.  I really do.  However, that is oftentimes impossible to do when you have one atypical child and one typically-developing child.

Both of my children were born in early March.  We call it “March Madness” in our house with their birthdays only being 2 years and 6 days apart.  Actually, I had the same due date for both my children but my son, Brady, came 3 weeks early and my daughter, Sydney, came two weeks early. 

My son had a few set backs in the fall of 2012 and began losing weight… again.  I remember fighting back tears as I weighed both my children the same night in December and discovered that they both weighed exactly the same.  I’m not sure why my kids weighing the same bothers me so much, other than Brady’s weight gain has been so slow while my daughter has seemingly grown up over night.



Summer 2012
Brady (age 4.5) and Sydney (age 2.5)


TWINS!

Over the past few months, oftentimes Brady and Sydney get mistaken at the grocery store, mall, school, Halloween, etc. for twins.  I always have to take in the stunned reaction of the person who asked when I tell them, “No, they’re not twins.”  I’d like to leave it at that and go about my day, but then the person inevitably stares at me in shock, oftentimes making me uncomfortable with the silence that follows, to which I then blurt out, “They’re actually two years apart.”  Why do I feel the need to explain?   I’ve had a few people who can’t seem to let it go as they keep exclaiming over and over again that they can’t believe they’re not twins!  To which I want to scream (but always refrain), “No, really!  They’re NOT twins!” 

I want to tell them to just let. it. go.  But really I have discovered that I just need to let it go.  This is our family.  These are our children.  These are our cards.  So what if they’re the same size? So what if they weigh the same?  This is me saying, “Let it go.”   It’s still hard to accept some days though.  I suppose it’s all a part of the process and I’m still learning and growing as we go. 

LIVING IN A SWEET VALLEY WORLD

On another note, I always thought it would be kind of cool to have twins.  I blame that on the book series that I was deeply dedicated to growing up, Sweet Valley High.  Maybe our situation is God’s twisted way of helping my dreams “come true”.  Not amused.   Yep, definitely not amused.

But this blog is supposed to be about "letting it go"…  this whole thing about having a four year old and two year old that both weigh 32 pounds.  And there’s not much height difference either.  Brady will turn five on March 1, 2013 and he recently had his 5 year well visit.  Once again, he came in at 5^th percentile for weight and 8^th percentile for height.  Relatively the same percentiles he has had his whole life, except for the year 2012 when he fell off the grid altogether.  But now he’s back on it, and I have to rejoice in those very small, eensie-weensie, baby steps. 

Perhaps 2013 will be the year of growth.  The year that Brady will indulge in eating something, anything other than Goldfish crackers and Cheese-Its.  The feeding tube helps put most of his calories in (90% of daily caloric intake), but hasn’t yet proven to be successful at true weight gain.  In actuality, Brady has gained almost five pounds since his feeding tube insertion in May 2012.  The feeling of little weight gain may mostly come from always feeling like we’re playing catch up.  Perhaps my new mantra should be slow and steady wins the race?

Here’s a look back at Brady and Sydney’s sibling journey over the past few years. 

Brady & Sydney ~ The early years

Summer 2010

Summer 2010

2010 Christmas card pic

Summer 2011

Summer 2011



2011 Christmas card pic

Brady & Sydney ~ Summer 2012





Brady & Sydney ~ Fall 2012

Go Buckeyes!

Leeds Pumpkin Farm

Leeds Pumpkin Farm

Leeds Pumpkin Farm

Playing in the leaves in the backyard

Halloween Fall 2012 - The donut and the cop

Brady & Sydney ~ Winter 2012

2012 Christmas card pic - priceless

Christmas jammies!

 

Looking back over the years of memories, I feel blessed to have two beautiful children.  Do I wish my son resembled other children who are almost five years old?  Absolutely.  Do I wish eating and gaining weight came easy for Brady?  Yes!  Do I wish my son was healthy and EoE-free?  Hells yeah.

However much I want those questions to be true, it still doesn't change the fact that Brady has EoE.  His growth journey will be up and down and ever so slow.  And here's me, trying to let that go.

Twins?  Give me a break.  Seriously.   :)