Monday, October 5, 2015

The Teal Pumpkin Project and Reflections on a Year Ago

The kids have been begging to put up decorations and pumpkins are popping up everywhere. The air is getting cool, leaves are starting to turn.  Halloween is quickly approaching.  And my anxieties are increasing.

This week marks the one-year anniversary of one of the hardest weeks of my life.  A year ago this week, we took our son Greyden to numerous specialists to try to find out the cause of his intense and scary vomiting episodes.  As part of the diagnosis processes and because the specialists couldn't explain the mystery of his vomiting, we were told we had to schedule an upper GI x-ray and abdominal ultrasound to rule out internal abnormalities.  The doctor who requested the x-ray and ultrasound kindly avoided the word tumor, but he didn't have to say it.  I knew it was a concern, even if unlikely. (And my suspicions about it being a concern were later confirmed when I read through his paperwork from the visit.)

What followed was one of the most intensely emotional weeks of my life.  Living day to day not knowing if there was something terribly wrong with our child, and knowing there could be, was hard beyond description.  I had some desperate chats with God that week.  I cried a ton.  I had a constant knot in my stomach and I barely ate. Everything else in life faded into the background as I focused on appreciating the smiles on my kids' faces and hugging them often, especially Greyden, as I couldn't help but fear the extreme situation in which we could lose him if something really was wrong inside his little body.  For the first time, the reality of how quickly one of my children could be taken from me was incredibly tangible. And amazingly, during this time, I somehow came to grips with this reality. Through my constant reflections and turning to God, I reached a point where I knew He was in control, and I knew He could take my child from me, and I knew that if that happened, He would carry me through it and I would somehow survive.  Not without intense pain and suffering, but I knew that there was more to reality what I could see right in front of me, and that God loved me and would somehow guide me through the darkness.  It was an amazing place to be in my relationship with Him, however intense and hard it was.

For those of you who don't know the whole story, the x-ray and ultrasound turned out fine.  The only thing the doctors found was some reflux.  Everything else internally appeared just as it should be.  I praised God, oh, how I thanked Him.  There was no tumor or devastating abnormality; we weren't dealing with anything life-threatening.  Let me tell you, when you have fears that something life-taking could be wrong with your child, and then you find out it's not the case, all other bad news seems somewhat pale in comparison.  So as we moved forward and continued to face health struggles with Greyden - a surgery, an endoscopy, diagnosis of an eosinophilic disorder, then extreme diet changes and food allergies, more bad endoscopies, and a return of his intense vomiting episodes...none of it seemed nearly as bad anymore. Because our little boy was in our arms and was smiling and loving on us and we were loving on him and that's what mattered.

Ironically, as I reflect on this week a year ago, we are preparing for yet another endoscopy for Greyden this Wednesday.  We will be finding out if our most recent diet changes have removed enough food allergens from his diet for his esophagus to heal.  My stomach again is twisting into knots, and I'm finding myself emotional and weepy.  Every endoscopy thus far - this is our fourth in a year - has resulted in bad news and difficult life changes.  I have a small glimmer of hope somewhere inside that maybe it will be our turn for good news, but I don't count on it.  I pray to God, I ask him to heal our little boy, but I know that God isn't a genie in a bottle and that what He allows to happen in this world isn't always what I would want to happen. Oh, if I've learned one thing over the last year, it's been that. That His ways are not my ways, but He is still God and He still loves me and I am to still love Him back despite it all.

So all of this finally leads me to why I originally sat down to write this blog post (and clearly I got very sidetracked - sorry!): with Halloween approaching, I'm having concerns about Greyden and trick-or-treating.  There are so few candies he can eat, and honestly I'm nervous about him even reaching into the bags of candy at all because of the allergens that will get onto his hands. It's been such a long road with him, and we believe we've seen him react to even small amounts of cross-contact with his allergen foods.  Halloween trick-or-treating is a very nerve-racking scenario for a parent of a child with food allergies or similar issues.



The Teal Pumpkin Project is a campaign led by Food Allergy Research and Education (FARE) to raise awareness of all the children struggling with food allergies, like Greyden, who may not be able to participate in Halloween trick-or-treating as freely as other kids.  By placing a teal pumpkin on your porch, you are telling others that your house is a safe place for kids with food allergies and that you are providing non-food items for kids who cannot have candy.  You should provide the non-food items in a bowl separate from the food items, ideally, if you decide to do both.  I think this is SO awesome, as the teal pumpkin houses may be the only ones where Greyden can chose a treat and actually keep it for himself.  You can read all about the Teal Pumpkin Project here:  http://www.foodallergy.org/teal-pumpkin-project.

It's crazy to me to think about a year ago.  I'm sure there were teal pumpkins, but I took no notice.  It didn't matter to us yet. I didn't realize how many people are struggling and suffering with food allergies, and I had no idea how we ourselves would end up falling into it all face-first.  It's been an eye-opening year and I'm thankful for my new awareness.

So this year we will be placing a teal pumpkin on our porch.  We will have non-food treats and also some allergen-free candies (smarties and ring pops) for the kids.  Dave and I decided to only offer candies that are safe for Greyden and most kids with food allergies, just out of respect for him and them.  It's our way of trying to make life a little more "normal" and fun for our little boy.  These days, with the way everything revolves around food, very little seems "normal" for Greyden, and I'm sure it's the same way for other kids with food allergies.  If we can give them a little piece of normal in the midst of their constant worries at Halloween, then by all means let's do it.

If you'd like to participate in the Teal Pumpkin Project, you can pledge to participate at the link below:
https://www.foodallergy.org/teal-pumpkin-project/pledge

Also, if you'd like a list of ideas of non-food items that you can provide for trick-or-treaters, here is a list from the Teal Pumpkin Project website:

  • Glow sticks, bracelets, or necklaces
  • Pencils, pens, crayons or markers
  • Bubbles
  • Halloween erasers or pencil toppers
  • Mini Slinkies
  • Whistles, kazoos, or noisemakers
  • Bouncy balls
  • Finger puppets or novelty toys
  • Coins
  • Spider rings
  • Vampire fangs
  • Mini notepads
  • Playing cards
  • Bookmarks
  • Stickers
  • Stencils
Thanks so much friends, for reading through this and for stepping into our shoes and our little boy's shoes for a moment.  Even if you don't do a teal pumpkin this year, I still just appreciate you considering and listening to our story.  The more people who know and are aware, the better.

Also, if you could send up a prayer for our little guy this Wednesday as he undergoes his fourth endosocopy, it would mean a lot to us.

Thanks friends. :)

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