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.  :)