Food is Celebration

Think about it.  Every celebration, special event, birthday, and holiday all revolve around food.  With the passing of Halloween and Thanksgiving, and Christmas just around the corner, holidays become a day that looks much different for a child with EoE.  Turkey, mashed potatoes, stuffing, gravy, pumpkin pie, rolls, candy canes and all the other traditional holiday items are replaced with formula.  Sometimes not even by mouth, but by feeding tube.  Some children don’t have any safe foods or so few that many of the previously mentioned food items are not within their scope of “safe foods”.

Brady’s food allergies consist of eggs, wheat, soy, corn, milk and peanuts.  When we were first told about Brady’s extensive food allergy list, I wondered what was left?  Watermelon?  At least, that’s what it felt like.  Fortunately, Brady can still have the occasional piece of toast or cracker because 90% of his daily caloric intake comes from his hypoallergenic formula.  Some kids have zero safe foods and therefore get by solely on the nutrition of their designated, often foul-tasting formula.  Some kids can have no food by mouth and get by solely on the nutrition that gets pumped in via NG or various forms of g-tubes.

Brady doesn’t find much joy in food.  Period.  I can’t say I blame the kid considering he vomited non-stop for the first 3 years of his life.  He’s been in feeding therapy with occupational therapists and a psychologist who have all tried to help him get over his fear of food.  Unfortunately the therapy hasn’t had lasting effects or success. 

Brady will occasionally partake in a bowl of gold fish or wheat and cheese crackers or french fries.  Sitting at a table for a meal can be quite something most days.  We’ve taken the pressure off the introduction of new foods recently, however we’ll revisit feeding therapy in the new year.  I have to keep the dream alive somehow.  My hope is that one day we’ll have a breakthrough with Brady’s relationship with food. 

Holidays like Thanksgiving and Christmas are not traditional for our family.  In fact, it often is about helping Brady be entertained while everyone else eats.  My world is different and that’s hard to swallow sometimes.  What I wouldn’t give to make a plate for my son that consisted of all the traditional holiday goodness.  What I wouldn’t give for our family of four to be able to all sit down together to eat a stress-free meal.  My 2 ½ year old daughter finds such joy in food that she often exclaims, “I like it!” after trying a new food.  She is flourishing, growing and glowing from her daily intake of food.  My son on the other hand is pale, thin, and sickly as he continues on his daily battle with EoE -- and that is so hard to see and accept some days.

THE FLARES

Brady has his good months and bad months that are unfortunately unexplained.  We can’t figure out sometimes why he has a flare when virtually nothing has changed in his diet.  The rollercoaster ride is definitely in effect with the soaring and plummeting of Brady’s weight.  It takes such a long time for Brady to put on weight, yet he can drop 3 pounds overnight with a flare.  After a flare, it takes days to get him to want to each much of anything again.  Therefore, the months it took for him to gain those precious 2 pounds will take months to get back on again.  My son is 4 years old and weighs, on a good day, 32 pounds.  For 20 months straight he hovered around 28-30 pounds and just recently added some weight since September. 

For months we had planned to have a “30 Pound Party” to celebrate this huge milestone.  However, every time we got close and I thought about planning an impromptu celebration with family and friends, Brady would inevitably flare and go right back down to 27-28 pounds.  This cycle lasted for well over 20 months and the “30 Pound Party” seemed like a distant dream.  He finally hit the 30 pound mark pretty consistently this past summer.  However, due to life changes with Brady (another day, another blog), the party idea just sort of disappeared.

It’s not easy watching the weight fluctuations.  It’s not easy to hold his hand and his head when he vomits and cries from stomach pain.  Food is oftentimes not celebrated in our home.  We get creative with holidays and birthdays so that not everything centers around the birthday cake or family meal.  However, I know I have much to be grateful for, despite this journey. 

GRATEFUL

I’m grateful for the support of our family and friends.  I’m grateful for the strength God grants me each day.  I’m grateful for the lessons learned.  I’m grateful for the health of my children.  Brady is having a good month.  Who knows what next month will bring, but for now I’ll relish in his slight weight gain and resilience.  I may even celebrate that success with a bowl of ice cream, after all, food is celebration, right? 

I also have a “35 Pound Party” to plan.  That party may not be for months or even a year, but I know this party will happen someday.  These milestones will be remembered and celebrated, with or without food. 

Brady's 1st Birthday Party.  Introduction of first cake?  Disaster.  Shortly after a little taste, full meltdown ensued. 

Brady's 2nd Birthday. Still keeping the dream alive that perhaps this year is the year Brady will try birthday cake and LIKE it.  Wrong.  Disaster #2.

Brady's 3rd Birthday.  We finally gave in and realized that birthday cake was just not gonna happen.  So, here's the introduction of birthday toast.  Success!  Hurrah!

Brady's 4th Birthday.  No cake, just a trip to the fire station.  One happy boy.  We finally got this birthday thing all figured out.