When one door closes

Hello again!

Okay, so that was a long hiatus from the blog.  I haven’t posted in quite some time.  Life happens, you know?  It’s been quite a year.  Life-changing decisions leading to chaos and calm all at the same time.  Last summer, my husband and I decided something didn’t feel right.  It was a conversation we casually discussed off and on for a few years.  Then a moment of clarity came in the form of vacation last June… the space and the time for deep conversations on what we really wanted for our family was granted.  And our conclusion was thankfully the same, we needed to move.  It certainly wasn’t an easy decision and not one we made lightly.  Moving meant taking our kids out of the only school district they’ve ever known, leaving friendships behind and leading us toward uncertain change in the future. 

It was simply a leap of faith.  Pure faith in knowing that what we were doing was the right decision for our children and for our family.  The fit wasn’t right where we were at and we were looking for something different that came in the form of family support and good old fashioned small town values.  So much had changed in the past seven years since moving to our previous home.  Brady was diagnosed with Eosinophilic Esophagitus (EoE) over six years ago.  Brady then had his feeding tube inserted over five years ago.  Our lives changed so drastically in a blink of an eye. Suddenly life was complicated.  We were complicated.  Everything about our lives became complicated from the way we ate meals to the way we interacted with family and friends to how we found daycare for our children.  We couldn’t just put our kids into any daycare due to Brady’s feeding tube.  From there, it became obvious we were going to have to rely on family in a very big way. 

Five years ago we had to take our kids out of daycare to accommodate Brady’s needs.  That led to three grandparents all taking turns watching our kids 5 days a week.  It was such a blessing.  And with that blessing came the guilt of all the needs our family now had and how much we had come to rely on family members to help us.   We started to have the conversation a few years ago that perhaps we should look at making it easier on the grandparents who had so generously given up their time to commute to our house during super early morning hours to watch our kids or get our kids on and off the bus while my husband and I were at work. 

When one door closes…

Suddenly the answer was so clear… it was time to move closer to home.  To a place where our kids could get much of the same upbringing that we had as kids.  To a place where small town values were still alive and well.  To a place where family would be just a few short miles away.  So, up went the “for sale” sign and one month later the “sold” sign followed.  Last summer was nothing short of a whirlwind with countless house showings and hard decisions on where we would live next. 

We closed a seven-year chapter full of hope and excitement of buying our dream home in the beginning that led to a different chapter altogether.  One full of pain, sorrow, and frustration on our road to diagnosis for Brady.  Living through his first year with a feeding tube also made a hard impact.  It was a chapter that through twists and turns led us to pure survival mode with a few bumps and bruises along the way. 

It’s funny how things can come full circle.  In August 2016, we began a new chapter in our lives full of hope and excitement once again.  This chapter started with the dream of building our own home.  This new beginning also included the start of a new school year in a new school system.  This chapter marked the beginning of new friendships formed and new family traditions started.  This chapter could easily be entitled, “Validation”.  All those concerns my husband and I had over the past several years slowly began to dissipate and what filled that space was full of the realization that the hard decisions we had made in the past year were absolutely the right decisions for our family.  What we have found in our move is a place that truly feels like home.  A place where new friendships have already been formed that I know will be deep and lasting.  A place full of support and love.

The day our house officially went on the market, July 2016.

Another door opens…

During the building of our new home, these past several months have been… well, shall I say interesting.  After we sold our home, we moved to our new town and had planned to stay in an apartment during the duration of the build.  Unfortunately, that very apartment fell through at the very last minute due to health concerns for Brady.  We decided it wasn’t worth risking his health, so we went with Plan B… moving in with my husband’s parents.  We were there from August to May and endured the painstakingly slow process of our home being built. 

Plan B certainly had its’ challenges.  For one, we were completely out of sync and out of our routine.  And unfortunately, I’ll admit that Brady suffered the brunt of that.  Feeding therapy took a back seat as we tried to conform to new house rules and traditions.  We didn’t make much progress at all with Brady eating and trying new foods. It simply felt like it was too much to take on in the middle of the chaos.   

Our feeding therapist told us that was okay at our session in December. I decided that our therapist was absolutely right.  I needed to stop with the guilt that Brady wasn’t getting the time and attention he needed with therapy.  I needed to be okay with the fact that when we moved into our new home, things would be changing.  We would be able to get back into a routine; a routine that will be challenging as we find our way back.  That routine will allow us the time and space to truly get back to the road that will help Brady get better.

I can safely say we are now ready to open the door to a new chapter.  

New game plan

And so we start our new game plan and I can’t wait to share the next part of our journey.  We have ramped up Brady’s feeding therapy this summer.  Brady’s feeding therapist has full confidence that my husband and I will get there.  That we can absolutely get Brady to a new, healthy place with eating and trying new foods.  To a place in far, far away land where a feeding tube is no longer needed. 

At last, it’s time to pack our bags and be on our way.

Moving company at the storage unit, May 2017

      

Move in day, at last! May, 2017.

Something's Gotta Give

That moment when it sinks in.  That moment when the unavoidable is staring you straight in the face.  That moment you realize you are being truly tested.  That your belief system is being truly tested.  That moment you realize your faith and optimism is at risk.  That moment when you finally realize that something’s gotta give.

GIVE UP THE FUNK

I haven’t posted in quite some time.  I kept waiting for inspiration.  I waited for improvement to report on.  I looked for signs of progress.  I sat back trying to take it all in and when I looked down from 30,000 feet above trying to see the big picture… I didn’t like what I saw.  Such little movement within the past year.  Baby steps, sure.  But giant leaps were nowhere to be found.  Brady had tried a few more foods... by taking the teeniest, tiniest bites possible.  We had added popsicles, donuts, coconut milk ice cream, and coconut milk yogurt.  And when I say we added these foods, I mean that Brady would now eat one or two bites in one sitting.  Certainly not enough to come close to a meal.  Hence, the need for 90% of his nutrition to come from his specialized formula through his g-tube.

I began to question.  Is this how it will always be?  Is this as far as we can go?  Is this all we get for the hard work and dedication and persistence?  I suppose with the lack of progress came lack of inspiration.  Just muddling through and trying to get from one day to the next.  The funk was here and settling in quite nicely.  I wanted to tell the funk exactly where it could go, but I simply didn’t have the strength… or the time. 

If I'm to be completely honest, last year was nothing short of overwhelming.  Brady started kindergarten and I quickly found out that kindergarten was no joke, especially considering Brady's developmental delays and recent diagnosis of ADD.   For some kids, school comes naturally.  For Brady, not so much.  Brady's first year was full of challenges, both EoE and non-EoE related.  Keeping up with it all was tough... and at times frustrating, frightening and depressing.  I felt that there was never enough time.  So many times I crashed at the end of the day, exhausted to the core with all the exertion that our daily life required.

So many days I thought to myself, this wasn't part of the plan!  This wasn't the life I envisioned for my child.  I was reminded in church this past Sunday that all of our well intentioned "Plan A's" are not within our control.  The message was a simple one, God is all about "Plan B's".  I'm still learning to be okay with and accepting of that.

THE AWAKENING

The awakening occurred shortly after Brady’s 7^th birthday in March 2015.  We had just arrived to Brady’s weekly feeding therapy session when his therapist came out with a blue gift bag for Brady.  Brady greedily tore into the bag to reveal his gift… a toy car.  His therapist was excited to celebrate his birthday and casually mentioned, “To Brady, my longest-standing client.”  And that’s when it hit me.  Bam.  Out of nowhere I was hit with the sudden realization that Brady was getting nowhere quick.  “Longest-standing client” is a title I never sought out for my son.  It didn’t feel like an honor.  It felt more like a failure because clearly we were doing something wrong. 

I started to question the little progress we had made.  The funk was beginning to lift and I was startled at how much time had passed with so little to report on.  Then the panic started to set in as I realized that Brady was about to finish kindergarten in a few short months and would be starting 1^st grade in the very near future.  Brady was attending a part time kindergarten program at the time and the thought of him starting school five full days a week scared the living crap out of me.  My biggest concern was just how very little Brady was still eating by mouth.  In March 2015, my only comfort was knowing that Brady was only away at school 2-3 days a week, allowing me and my husband time to play catch up with calories the other days of the week.  Brady still gets most of his nutrition through his g-tube and eats next to nothing for lunch at school.  The only real nutrition Brady gets during the school day is from a lunch bolus feed given to him by his school nurse to sustain him all day while at school.

I tried to remember to just breathe.  But I couldn’t.  All I could see was this precious window of time rapidly closing in to work with my son on feeding therapy.   In between trying to breathe, I started to question our lack of progress.  Why weren't we further along with eating?  When would Brady start trying new foods?  When would Goldfish finally stop being the only staple food in his daily diet?  When, when, when???  I was so very tired of not seeing progress.  Frustrated with the baby steps.  And most of all, wondering…. What was it going to take to get Brady in a better place with eating?

CRUCIAL CONVERSATION

A week after finding out Brady’s new title of “longest-standing client”, I went back to his therapist and asked the all-important question, “Why?”  Why had we earned that title?  What were we doing wrong?  What did we need to do to make more progress?  Her answer was simple.  We needed more time.  In her opinion, Brady is a tough case.  She said that in her experience, intensive feeding therapy works better when one parent is able to stay home full or part time.  Well, there you have it.  Her answer shouldn’t have surprised me.  But once she said it, all the puzzle pieces fell into place. 

This is the look of most of Brady's feeding therapy sessions.  A plate full of good intentions in the beginning of the session.  Then 45 minutes spent trying to get Brady to take a few bites.  By the end, most of the food on the plate ends up being thrown in the trash.  On a bright note, here is a picture of Brady trying coconut chocolate milk.  He will drink 1-2 ounces on occasion.

NO WONDER

No wonder we haven’t made much progress.  No wonder Brady wasn’t getting any better.  No wonder there was frustration.  Our current situation was not ideal.  Here we were with two full-time working parents and three grandparents desperately trying to fill the void and help during our work days.  The five days a week my husband and I are at work, we have three different grandparents watching our kids.  They do an amazing job taking care of our kids, but they simply do not know feeding therapy.  Nor should they.  They want to be “Mee Maw” and “Grammy” and “Grandpa”… not the feeding therapist.  Having a child with a feeding tube limits our childcare options and we were simply making due with the family support that was offered and desperately needed. 

It was time to make some hard decisions.  Brady needed more attention.  He needed a more consistent effort with following through on feeding therapy.  The truth of the matter was, there just wasn’t enough time in a day.  Five days a week my husband and I were both out the door by 7AM.  Therefore, no breakfast feeding therapy.  We returned back home early evening, therefore no lunch feeding therapy.  Five days a week, we were left with a small window to do feeding therapy during dinner and two full days during the weekend to focus on feeding efforts.  That all sounds good in theory until you add in the whirlwind of life.  The whirlwind of activities – soccer, dance, t-ball, piano, homework, trips, church, etc.  Adding that into the equation oftentimes made feeding therapy and techniques inconsistent... even on our best days.

GUILT TRIP

Then the inevitable guilt set in.  Where had I been?  Why hadn’t I done something sooner?  Why had I let so much time go by with so little progress?  Why hadn’t I asked the question sooner – what more could we do to help Brady?  Never mind that.  I try so hard not to second-guess.  We are in the here and now… so what were we going to do about it?

It was clear that I needed to cut back on my work hours to focus more on Brady.  He was simply getting lost in the shuffle.  It was time to officially get our priorities straight.  So, I did some research to see how I could reduce my hours to better meet Brady’s needs.  Next, came the big ask.  I was sick with fear making the request.  I prayed and hoped I would find understanding since my request the year before was denied.  After working through some options, I was able to reduce my work schedule a few hours per week.  Not much, but at least it’s something.  It’s a start.  A start that I hope will lead to more progress, to some sense of normalcy, to lead us to a healthier place where Brady learns to enjoy food.  A place where Brady starts to truly thrive, without the help of his feeding tube, to grow without the help of formula, to safely land on the growth chart all on his very own.

AND SO WE BEGIN

We begin this concentrated effort.  We begin to be more consistent with feeding therapy.  We put faith in "Plan B".  We hope.  We dream.  We curse.  We shout.  We celebrate.  We believe.

I am a parent of a child with special needs.  My superpower is the ability to hope beyond what the eye can see and faith that through love all things are possible.  I have what it takes: the presence of mind to do what I do best – love with all my heart and BELIEVE.  HOPELights






A FEW BRIGHT MOMENTS FROM THE PAST YEAR...

Trying popped sorghum (Brady has always loved the smell of popcorn). Since Brady is allergic to corn, this is a safe alternative.  He will only eat a few kernels whenever we pop it.
The dream is for him to eventually eat a single serving.

Adding coconut milk yogurt to his dinner on occasion.

Brady celebrating his "50 Pound Party" with a few buddies.  Brady hit 50 pounds (huge milestone!) in late spring 2015. Brady was able to add donuts to his diet in fall 2014 (hurrah!). The boys celebrated with safe chocolate frosted donuts. These are moments I have to hold on to.

This picture hung in Brady's kindergarten classroom last year.  Such an amazing concept for those kindergarten minds...
as well as for their parents.  :)  

Sleeping with the Enemy

Good Night. Sleep Tight. Going to fight another EoE fight tonight.

As Halloween approaches, our children are exposed to all sorts of Halloween frights. Spooky decorations. Spooky cartoons and movies. Spooky costumes. Spooky stories. And all this spookiness may or may not result in a nightmare or two. Fears of monsters and ghosts and goblins haunting the dreams of a child.

It’s made me wonder how we sleep at night. For some parents, they are virtually unaffected. They tuck their children into bed with wishes of sweet dreams. Some parents eventually go on to bed themselves to get a good night’s rest, enviously uninterrupted.

For others, they don’t have it so lucky. Their children may suffer from night terrors and nightmares. Their children may just be poor sleepers. And other parents, like us, have children that are chronically sick and sleep becomes routinely interrupted, especially in times of EoE flares… the enemy.

This has become a way of life for me and my husband. Staying up late to give bolus feeds, then waking up a few times each night to change pull-ups and pajamas that are urine-soaked. Our son consumes 40-45 ounces of Elecare Jr. daily via bolus feeds through his g-tube. Sixteen of those ounces come late at night and Brady oftentimes sleeps so hard, he doesn’t wake up to go to the bathroom. Thus, resulting in multiple pull-up changes.

SWEET DREAMS

"Hey Mommy? Will you sleep in the guest room?" Brady asks hopefully… Every. Single. Night. It wasn’t until recently that I finally put two and two together and figured it out.

This habit started several months ago. It was a time when Brady’s EoE was flaring and he had a couple of rough nights in a short time span resulting in multiple trips to the bathroom to vomit in the middle of the night. These nights are nothing short of exhausting.

It’s the small sound that I only slightly hear in my deep-sleep induced state that quickly escalates to, "MOMMY! MOMMY! DADDY!" It’s at that point that I shoot straight out of bed in a dead sprint down the hall, heart pounding, fighting the sick sense of dread of what is about to happen, all while just trying to reach my son’s room in time.

What follows is nothing short of heartbreaking and frustrating and draining. My husband and I quickly carry Brady to the bathroom where he will eventually projectile vomit, almost always missing the toilet bowl, resulting in the most foul-smelling vomit that lands all over the bathroom floor, toilet, bath mat and wall. Its days before the smell is really truly gone.

The vomiting can go on for several minutes. We wait, just to make sure Brady is all done. We rub his back, put a cool washcloth to his forehead, and quietly talk him through yet another EoE flare. Sometimes I’m successful, but most of the time I’m not at holding back the tears. It’s especially heart-wrenching when Brady looks up at me with tears in his own eyes and cries, "Mommy, why do I always have to throw up? I HATE throwing up." He repeats over and over again.

Oh son, how I wish I had good answers to your questions because I grapple with the same questions myself. I try to soothe him as best I can and tell him he will start feeling better soon. After we get Brady calmed down, we change him into a fresh pair of jammies not soaked in vomit and tuck him back into bed. Lastly, I tell Brady, "Sweet dreams, jelly bean." Then I wait for it… and the inevitable question arises, "Hey Mommy? Will you sleep in the guest room?"

I answer, "Of course I will, sweetheart." Most of the time I make it back to my own bed and Brady is none the wiser. Maybe this is wrong, but a girl needs her sleep and I’ll admit I thoroughly enjoy our king-sized insanely comfortable mattress. Sometimes his flare is so bad, I don’t feel comfortable going the rest of the way down the hall and I find myself settling into the guest room, just as requested.

So oftentimes, we as parents, try to protect our children. Some parents fight the monsters that come out at night. Some parents soothe a child after a night terror or nightmare. Some parents check under the bed, in the closet, in the drawer looking to chase away the fears of their child.

Monsters don’t come out to scare Brady. Brady rarely has nightmares. Brady has no fears of what’s under his bed, in his closet, or in his drawer. No, my son fights the terror of something else altogether… fears of the nighttime vomits. Fears of the EoE flares. Fears of waking up in the middle of the night with excruciating stomach pain and the knowledge that this pain will result in yet another violent vomiting episode. He sleeps with his EoE enemy.

Brady thinks that by having me or my husband sleep in the guest room (located right next to his room) that somehow, someway that will make it all better. Oh, how I wish it were that simple. What I wouldn’t give to have the power to chase away the EoE flare monster. To utterly destroy that SOB.

All I can do, all I have the power to do, is pray. I pray that Brady can get through the rest of the night without another vomiting episode. I pray that he can fall asleep to sweet dreams at last. I pray that he can wake up, ready to face a new day with a smile. I pray for a cure. I pray for rest. I pray.

　

“Ba – da – ba – da – da, I’m lovin’ it”

NEVER IN A MILLION

If someone would have told me six years ago when I was pregnant with my first child that I would spend countless hours by his side as he learned to accept and eat food, I never would have believed it in a million years.  If someone would have told me in spring 2010 that I would spend the next four years taking my son to hours and hours of feeding therapy, I absolutely would have believed it.  Within Brady’s very first year of feeding therapy, I quickly realized the often agonizingly slow process that is feeding therapy.  

In a word, it’s frustrating.  Progress is baby step by baby step with several steps backwards before real movement forward.  There are setbacks.  There are successes.  There are more setbacks.  And the pattern goes on and on.

We’ve been at this feeding therapy game for well over 4 years with very little progress, until recently. We’ve tried feeding therapists with all sorts of different backgrounds and education from feeding teams, to occupational therapy, to behavioral psychology, to speech therapy.  Each therapist approached Brady a little bit differently.  And each therapist didn’t get very far in a several month time span.  One therapist admitted that after seeing Brady for four months, she was officially “stuck”.  Yep, welcome to our world.

A few lessons we have learned along the way.  One, don’t expect miracles overnight.  Two, there absolutely has to be a connection between the therapist and child.  Three, if I (as the parent) dread going to therapy and oftentimes leave feeling defeated and helpless, it’s time to move on.  Because afterall, if I’m miserable, how miserable must Brady be feeling?  Four, you have to give each therapist a solid chance.  Never go just once (unless the connection is really that bad) or twice and stop going.  The thing with feeding therapy is persistence.  It’s not for the weak.  It’s about powering through all the frustrations, setbacks, and limitations to get to the ever so elusive end-goal… eating food.

I was elated when Brady said he wanted to try pizza. 
I made him a safe pizza that he could eat.
It started out okay,
but quickly went downhill from there.
This is a pretty typical day.

THERAPY FOR THERAPY

Sometimes I leave Brady’s feeding therapy sessions with an intense need for therapy myself.  Not for feeding, but to unload and emote after yet another horrifying feeding therapy session.  The emotions and frustrations that occur in a 45 minute window can be intense as I watch my son struggle and fight against taking the teeniest, tiniest bite of food that is out of his “comfort zone”.  And by definition, just about everything is out of his comfort zone with the exception of Goldfish, toast, and French fries.  

Therapy was especially difficult when I was taking Brady to his weekly feeding sessions with a behavioral therapist during the fall 2013.  Just painful.  Not only was there no connection between this particular therapist and Brady, but I had come to dread driving him to his appointment.  It was the worst therapy has ever felt.  The approach was so negative that I would oftentimes witness Brady lashing out and transforming from a 5 year-old little boy to his former two-year-old self.  All of a sudden the tantrums were back in full force, food was being thrown on the floor, he began spitting again and overall acting like a terror for each 45-minute session.  

We did this routine for four months before I said enough was enough.  We weren’t getting anywhere and I didn’t like the negative place this therapy came from.  Everything was in a form of punishment.  There was no getting down on Brady’s level.  There was no real motivation for him to succeed.  

It was about this time I came in contact with another mom in the area whose son was also receiving feeding therapy.  She gushed about their new therapist.  She was absolutely elated at the quick results they had seen in such a short amount of time.  I was intrigued and placed a call to see if there was an opening and to see if this feeding therapist was for real.  

         

Brady with his new 
feeding therapist, Miss Stacy,
during Feeding Tube  Awareness Week.
Stacy even bought a t-shirt in
support of her tubie buddies!

Brady and Miss Stacy checking out his
ice cream tongue in the mirror.

A NEW YEAR, A NEW WORLD

Thankfully, she had one opening left and Brady started feeding therapy with Miss Stacy in January 2014. This therapist has been life-changing.  I sometimes refer to her as being “magical”.  I know deep-down there is no magic involved, but what she has gotten my son to do over the past few months have been absolutely astounding.  I remember Brady asking me a few days after his first session with Miss Stacy when it would be Tuesday again.  I asked him why he wanted to know, and he excitedly replied, “Because that’s when I’ll see Miss Stacy again!”  Wow.  He has never, ever been enthusiastic about attending therapy, much less counted down the days until the next session.  We were off to an amazing start with his new therapist and I had hope again… something I had painfully lost in the fall with the previous therapist.

BRADY'S FIRST TIME TRYING SEVERAL NEW FOODS AT ONCE,

INCLUDING SLIM JIM

TEENY, TINY BABY STEPS

Brady started to make progress with Miss Stacy almost immediately.  She challenged him.  I’m not sure if his positive response to her was from their immediate bond, or Brady maturing and having the ability to be reasoned with, or a little bit of both.  My hunch is the latter.  Brady went from not being willing to even entertain the idea of putting anything in his mouth but a piece of toast, Goldfish or French fry to taking the teeniest, tiniest bites of banana and gummy worms.  Huge success!  We progressed to popsicles within a few weeks and rice chips and wheat thins soon followed.  From there, Brady has progressed to taking tiny bites of Slim Jim.  Slim Jim!  Completely out of his comfort zone.  

Another big day was the introduction of slushies.  For over two years, and ironically, ever since he had the PEG feeding tube inserted, Brady gave up apple juice (the only juice he was willing to drink) and went to drinking ice water only.  The introduction of slushies was quite the big deal.  Granted he only takes a few small sips, but that’s progress folks.  We’ll continue to introduce new flavors of slushies and juices, one small sip at a time for several months to come.

BRADY'S FIRST TIME TRYING AN ICEE SLUSHY

MICKEY D’s, PLEASE

A few months ago, nothing short of a miracle occurred.  It was late in the evening, very close to bed time in fact, when Brady looked over at me and said, “Mommy.  I want to go to McDonald’s to try their chicken nuggets.”  Say what?  Brady never asks to go to restaurants and even though it was bedtime and we had already had dinner, I didn’t think twice about packing up the family for this momentous event two miles down the road.  Although I will admit I had a nagging thought in the back of my mind that Brady was trying to stall going to bed.  He’s smart that way.

Then, another wonder happened.  Instead of going through the drive-thru as we normally do because Brady hates sitting in restaurants most of the time, Brady actually asked if we could go inside to eat.  Once we were inside, Brady and his sister made a beeline for the Happy Meal toy display.  Well crap.  Two thoughts went through my head.  One, he’s stalling going to bed.  Two, now he’s only saying he wants to eat chicken nuggets to get the Spiderman toy on display.  Still, I kept the dream alive and ordered the four-piece McNugget Happy Meal.  

Once we sat down, Brady tore into his chicken nugget like no one’s business.  My husband went to grab some ice water for him and by the time he returned with the drink, Brady had already eaten over half the chicken nugget!  It was as if Brady had been eating chicken nuggets his whole life.  This was Brady’s first meat in over four years.  Brady ended up eating two whole chicken nuggets that evening and I remember sitting in the middle of that McDonald’s with tears in my eyes in utter amazement.  

McDonald’s has never felt so special.  Two chicken nuggets may not seem like much to most people, but to my husband and me, it was a moment.  That night something changed.  Over the past four years, I have seen Brady taking the smallest of baby steps and on this evening, he made one giant leap.  

Brady at McDonalds trying chicken nuggets!

PROGRESS, ONE SMALL BITE AT A TIME

That evening was so surreal, that I wondered if it was just a fluke or if we really had turned the corner.  My hope was back in full force and I didn’t want it to slip away again.  I am happy to report that we continue to make progress with Miss Stacy’s help.  We’ve recently introduced pasta, coconut milk ice cream, coconut milk ice cream bars, coconut milk yogurt, rice milk, and even hamburger.  Brady continues to try new things every week in therapy and that is huge progress.  Before, he would barely entertain the idea of bringing most foods up to his lips or even nose to smell.  Now, Brady is taking small bites… but they are bites nonetheless and we will take it.  

The foods that we have introduced by no means are enough to sustain his daily nutritional needs.  For so long, Brady has ingested so very little at meal times that he gets full quickly and can’t each much at one time. However, we want to get to a place where meals become actual meals and enough to sustain him.  In the meantime, we offer his newly introduced foods at meal times, then give a bolus to help supplement the rest of his caloric needs.

BRADY TRYING MELTED POPCICLE FOR THE FIRST TIME

(this was a long way from only drinking ice water)

BRADY'S FIRST TIME TRYING HAMBURGER  

MAKING FOOD FUN!

THE ROAD TO TUBIE GRADUATION

It’s a slow process.  It also means his feeding tube is here to stay for years to come.  Brady surpassed his two year feeding tube anniversary in May 2014.  I’m thankful we have the feeding tube to help ensure Brady is getting everything he needs to continue to grow and thrive.  But I so look forward to the day when he becomes a “Tubie Graduate”.  That will be a huge celebration.  But first, there is lots of work ahead of us. The road to tubie graduation will certainly have its bends and turns and detours and dead ends.  The road won’t be easily traveled on most days. But we’re all-in on this road trip, no matter where it takes us.  

In the meantime, we will take the time to celebrate each newly introduced food.  We’ll celebrate each successful feeding therapy session.  We’ll celebrate the fact that Brady is becoming more open to trying new things.  

And most of all, we’ll celebrate taking leaps of faith along the way.  

Deep Down Real

 MY INNER MUSICAL SOUNDTRACK

For as long as I can remember, I have been rolling through life with some sort of theme-song playing in the background.  I love music of all kinds.  My theme-songs have changed over the years varying from the almighty Gloria Gaynor anthem, “I Will Survive” and Neil Finn’s “She Will Have Her Way” from my early college years to post college years, including “Dreams” by the Cranberries and “Just a Ride” by Jem.  Then I had my Carrie Underwood phase where just about every Carrie Underwood song was my theme song, including “Wasted”, “Jesus, Take the Wheel”, and “Lessons Learned”. 

My current “jam”, as my son would say, is “Brave” by one of my favorite musical artists, Sara Bareilles.  This post is all about being brave.  Over the course of writing this blog, it has felt a bit like peeling back an onion.  I have peeled back many layers over the past year or so and I’m about to peel back yet another, rather intense layer. 

YouTube video, “Brave”

https://www.youtube.com/watch?v=QUQsqBqxoR4

THE BRAVE FACE

The thing about being a mom of a special needs child is this constant, nagging urge to put on the brave face… for everyone.  Our children, our spouses, our families, our friends, and the list goes on and on.  This face is not untrue.  It’s not false.  Because really, when it comes right down to it, every mom of a special needs child is uniquely brave, whether they want to admit it or recognize it or not.  It’s simply there and it’s inescapable.

Oftentimes after updating my blog, I will get messages from family or friends that say, “You’re such a good mom” or “You’re so strong” or “I don’t know how you do it.”  I relish in these comments, because I admit, I have a nasty case of self-doubt and there are times when I desperately need that pat on the back or words of encouragement.  So thank you, to all those out there who do take the time to read this little blog and reach out.  It means more than you’ll ever know.

READING BETWEEN THE LINES                    

I write this blog for several reasons.  To inform.  To educate.  To inspire.  To help. To express.  To encourage.  To feel. To be real.  To be.

And in between all of this, I want to be authentic.  Through all of the pats on the back previously mentioned, I began to think over the past few months if I have really gotten down to the deep, down truth of it all in this blog.   To lay it all out there and just be honest.  Most of what I’m about to share is at times embarrassing and self-deprecating.  It’s not easy admitting our weaknesses because it’s human nature that encourages us to always put our best foot forward and our brave faces on.

I doubt a lot.  I doubt my abilities as a mom.  I doubt the decisions and choices I have made for my son.  I doubt the abilities of the health professionals surrounding my son’s care.  And until recently, I doubted the effects of feeding therapy.

MAMA GUILT

I have two children.  Brady is my 6-year-old with EoE and Sydney is my 4-year-old and EoE-free.  When Sydney was born in March 2010, Brady was not yet diagnosed with anything.  Yes, he was in feeding therapy and speech therapy and vomiting all the time, but that was the extent of it.  Six months after Sydney was born, we took Brady to a GI specialist for the first time.  Within just a few weeks Brady was officially diagnosed with EoE and our whole world changed.  Between the therapies, the multiple trips to Cincinnati Children’s Hospital Medical Center, and trying to get Brady to eat everyday was exhausting.  We tried desperately to get Brady to eat three meals a day, plus snacks and the dreaded Kids Essentials 1.5 Cal Boost formula.  At the time, Brady was supposed to be drinking 36 ounces of formula/day.  We were lucky if we got 12 ounces down him.  And what little bit we did get him to eat or drink oftentimes resulted in yet another unexplained vomiting episode. 

It was such a frustrating and all-consuming time period for our family.  I had the mama guilt everyday that my 6 month-old little girl was getting lost in the midst of all the crazy.  It wasn’t fair for her to have to take a backseat, but Brady was on the verge of a major medical crisis with various health problems, loss of weight and developmental delays on top of it all.  And to make matters worse, I was suffering from post-partum depression after having Sydney and I just couldn’t shake it, no matter how hard I tried.  There.  I said it.  It’s not easy to admit to… again that brave face always wanting to make an appearance.  The deep down truth of the matter, I was struggling.  Struggling so much that my unobtrusive husband printed a list of physicians near our home and handed it to me 5 months after Sydney was born, kindly nudging me towards the road to help.

DR. FIX IT

It took me another month to finally admit, yes, I needed help.  I was having such a hard time dealing with it all that I was just going through the motions, but just barely.  I timidly went to my new primary care physician (PCP) and when she came in to meet me for the first time, I remember just bursting into tears in front of this total, complete stranger.  I was mortified.  However, that one act alone made me realize that I had waited too long to admit I needed help.  Without hesitation, my new PCP put me on anti-depressants.  I was ashamed for the longest time that I needed them.  It felt like “anti-depressants” was a dirty word.  I didn’t want to talk about it with anyone.  I only opened up about it to my husband and a few close friends that I was now taking meds for what my PCP called “situational depression”. A few friends judged and I guess that’s why I kept a lot of it to myself.

I begrudgingly took the pills each day and after a month, I definitely started to notice a difference.  It was certainly a lesson learned that it’s okay to admit when I need help and that I don’t have to be everything to everyone all the time.  I felt so lost back then with such a feeling of despair and hopelessness.  Watching Brady suffer day after day with no answers and trying to take care of a six month old baby girl was simply sucking the life out of me.  I don’t mean to sound crass, but that was the deep down truth of it all. 

I’m so glad I sought treatment when I did because a month after visiting my new doctor, Brady was officially diagnosed with EoE.  The next several months were hectic and emotional.  I was much better prepared for the next phase of our lives since visiting my own doctor and I’m so very grateful that my husband recognized a need that I didn’t realize I had.  I have learned over the past few years that self-care is the absolute key to survival.

THE 80/20 RULE

There is a rule of thumb in business that you should focus 80% of your time and energy on the 20% of work you feel is most important.  Seems simple, right?  It’s all about how to work smarter, especially in the days of limited resources.  I recently came to the realization that I have my own 80/20 rule.  I feel that 80% of the time, I’m doing good.  I’m hanging in there.  I’m accepting of the life that has taken a turn over the past few years.  That 80% is the optimism shining through and the hope of good things to come.  That 80% also helps me to see how far we’ve come and to truly appreciate the people and things surrounding our family and home.  It’s just that shifty and aggravating 20% that overflows into my happy place and threatens to take over on occasion.  I can see where that 20% could easily engulf the 80%, chew it up and spit it out.  All of that hard work of the 80% simply crumbling into dissipation at the first sight of resistance. My 20% is the underlying hurt and frustration and anger that resides just under the surface on my not so good days… and let me tell you, that part ain’t so pretty.

SCATTERED OPTIMISM

I’m an optimist at heart.  Always have been.  Many of my posts are full of hope, and a majority of the time I feel that way.  But I have my days -- don’t we all?  I have a harder time especially when Brady has flares, or he has a bad feeding therapy session, or he’s in pain hovering over the toilet fighting back nausea in the middle of the night, or he’s not growing or developing on schedule, and the list goes on and on.  I can so quickly revert back to that feeling of hopelessness.  It’s those days I see “the 20%” coming on and I can’t stop it.  I can’t fight it.  I submerge myself in the deep dark feelings of despair and then the hate begins.  Hate for this horrible, uncured disease.  Hate for the pain and suffering Brady goes through.  Hate for the need for feeding therapy.  Hate for all the stress that can pile on. Hate for the feeding tube (even though it’s done wonders for Brady). 

And unfortunately, the hate for this disease can get misplaced, finding itself landing on an innocent someone or something.  It’s hard to explain.  I just know that I catch myself lashing out and grabbing a hold of something, anything at times of desperation.  That “something, anything” could be a multitude of things or persons that cross my path and make my sometimes already complicated life even harder.

It’s right about at that point when I begin to loathe myself because of all the hatred that has built up for these seemingly meaningless “things” that I cannot change.  And then I snap out of it.  I realize things aren’t all that bad, that others out there have it so much worse, and I move on… until the next time.  The secret to recovery on these downer days is to recognize it, own it, accept it, take a breath… and then begin to walk on, move forward, keeping that head held high, all while resisting the urge to crumple and fall for the ridiculousness of it all. 

MY NEW PLAYBOOK

Through this journey I have learned a lot about myself.  Sometimes I let the little things take over and blow up into something that is so much more than it should be.  Whether it’s a snub by family that hurt my children (and me), hurtful comments made by others, or friendships tried and tested.  There is just no room in my life for this negativity.  Perhaps a few more bridges need to be burned.  Perhaps new bridges need to be built.  I know one thing is for certain, I’m not going to let others’ judgments and decisions affect my life anymore – at least not in a way that it festers.  I’m not going to let someone else make me feel bad about myself and my decisions.  Those things are out my control.  What I do have control over is to move on and simply let it go as quickly as possible.   

Perhaps I need to take a page out of the business 80/20 playbook and start dedicating my 80% towards achieving the life I want for myself and family.  The 20% that really counts.  The 20% that is all about providing a warm, nurturing life for my family, despite all the odds and mishaps.  Creating a life rich of positive experiences, giving back, helping others, setting a good example for my children and simply living this life to the fullest. 

I know it won’t be easy at times to keep the focus in the face of adversary.  But when those times do arise, and they will, I am committing myself to remembering my new playbook.   To let go of things I have no control over.  To get rid of the negativity and focusing on my dedicated 20%. 

I have a feeling that 20% is going to fill my bucket for years to come.