Monday, May 27, 2013

Way to Go Disney!!!

We have gotten used to packing foods for every single meal and snack our boys eat when we travel anywhere.  In order to go out for an all day trip it takes a our large diaper bag that is filled with all of our medical supplies/medicines/epipens, diapers, bibs, wipes, safe snacks for each child and Mommy.  Then we have a large flat cooler that fits under our stroller that is filled with 3 meals for each boy and cold snacks for the three of us.  We have a third cooler packed to the brim with safe drinks for the children.  Due to the fact that our littlest one has drooling issues from his low tone and reflux (and LOVES dirt) we always need to travel with two extra shirts and a pair of shorts.

My hubby's dad took us to Disney this weekend.  We packed everything up and then...

Our first day in the Magic Kingdom we went to the Starlight Cafe'.  We brought our little boys lunches like always... but found out that we really did not need to.  They were able to accommodate BOTH the boys and mommy!!!  My littlest one and I both ate bacon hamburgers with tapioca buns that are toasted. (Udi bread was available but since my little one cannot eat eggs it is not a choice for us). We were able to use safe barbecue sauce on the burgers (although ketchup and mustard were available).  I was able to get lettuce and onion on mine as well.  We also were able to eat french fries made in a designated fryer!!!  The manager offered us grapes, applesauce, jello, or Enjoy Life Chocolate Chip cookies as a safe side for our kids meals.  I'm a little embarrassed to admit I actually hugged this manager and gushed over how much it meant to me that they offer so many choices to children like mine. (I wish I was able to capture more pictures, but honestly my phone would not stay charged this weekend. Praying it is just needs a new battery!)

The next day we went to Epcot. I felt it was a little more limited eating at The Land, but they were still so willing to ensure our safety and our children a meal they would enjoy.  I cannot say enough complimentary things about the Chef's knowledge of each safe food choice and every ingredient in each dish!  He was amazing and I felt confident in his ability to keep us safe.  He even offered to create a safe pizza on pita bread for my oldest little one as he said the other breads all contained or were processed in a facility with eggs.  The same safe sides offered at the Magic Kingdom were offered here as well.

This (see picture below) was found in The Land at Epcot!!!  WAY TO GO DISNEY!!!  Inside this tray is an array of yummy, worry free treats: Enjoy Life chocolate chip cookies (the crunchy ones), Enjoy Life chocolate brownie cookies, Enjoy Life Cocoa Boom Bars, Gluten Free and Sugar Free Brownies (another brand- I do not know which brand), fruity gummy bears, and Carmel popcorn. I was amazed! My hubby seemed pretty amazed too because he took the picture without prompting!!!

Sigh a little sigh of relief allergy parents!

Then, I learned that Downtown Disney is holding a hidden gem!  Babycakes is located there!!!  Let me explain that Babycakes is an amazing bakery that caters to people with food allergies/intolerance and celiac disease.  My little boys could walk into this bakery and literally eat ANYTHING their heart desired!!!  It was an amazing.  Sadly, we went there earlier in the evening and they had every baked treat your deprived palette could desire!  We talked about every yummy desert we planned on eating during dinner... but when we returned to after our dinner, almost every delectable treat was gone.  We were able to buy 6 cupcakes- 3 chocolate brownie cupcakes and 3 blondies (vanilla cake with vanilla frosting).  The chocolate brownie cupcake was my little one and I's favorite treat. The blondie was my oldest favorite. Every. Bite. Was. Heaven!!!  These were the best cupcakes I have eaten (sadly, including my own creations!) since I have been gluten free.  This was the icing on the cake (yup- pun intended!) 



Here are a few more pictures of our adventures!  Thanks Papa for helping us create such amazing memories!

Monkey see.....

Monkey do!

Our nephew, our oldest, and our littlest guy

The momorail!

Monday, May 20, 2013

Serene Sunday Simplicities

I love serene, Sunday mornings with my babies.   Sundays are truly a day of rest in our home.  No prior obligations, no school, no therapy, no sports- just family, and the memories we wish to make on this day.  The boys have both developed horrible upper respitory infections, barking coughs, asthma and are a little extra snuggly today.


Theys are both well rested and happy, yet they are still sleepy enough that they want to sit in my lap and cuddle.  It is in these quiet moments that memories of childhood are made.


This morning we baked a gluten free coffee cake before cuddling on the couch.  The smell of safe, aromatic foods waft through the kitchen and throughout the house.  I lit a few candles on a high countertop and played some soft music.  Then we sat down to enjoy a quiet, “unplugged” morning.  The boys cuddled closely in my arms and we read story after story after story.

Without a shadow of doubt, it is these moments I will long for when they are older and I am sitting there with an empty lap.  I know I will look back on these moments and miss the sounds of their innocent questions and the purity of their squeals of laughter.  Who knows?  I just might miss the feelings of tiny, sharp elbows being mashed into me as they change positions and hardback books being knocked into my face as they figure out who’s turn it is to turn the page.   But without a doubt, I will miss their heads on my shoulders as they both play with my hair and listen to my story telling.  I will miss the scent of their shampooed hair.  I will miss them wanting to climb in my lap. 

   But for now, I am so thankful for now. 

Saturday, May 18, 2013

Interview with My Oldest Life Threatening Food Allergy Child

Tell me what it is like having food allergies:

I"t is HORRIBLE because my friends are not allergic to anything. Some of them are a little allergic to dust.  I wish I were only allergic to dust.   It would be much better not having food allergies.  It would be much happier and I would feel free.  Even though it is horrible to have them, it is REALLY nice when people think of me!"

Mommy’s thoughts:  I know my little guy has a flair for the drama.  Smile.  My heart was particularly struck when he said that he would feel “free” without food allergies.  Sadly, I would say he is 100% right- it would feel freeing.  I cannot imagine life without thinking about what/how we will safely feed them (and me) and allowing him to play outside without taking survey of the grounds.


How does it make you feel when you eat different foods than your friends?

My oldest: “I feel sad because I’ve never been able to taste what they are having.  I want to know what it tastes like.  Other people would feel sad too if they could not eat what everyone else was eating.  I am curious even though I may not like it”.

Mommy's thoughts:  I was actually a little surprised about this response.  He has made complaints in the past in passing, but I was actually a little surprised about this response today.  I usually am able to put a positive spin on things by telling him he his able to bring his favorites while others do not get to choose.  He usually smiles and then scampers off to play.

A cake I made to go to a friend's birthday party with a Buzz Lightyear theme and a graduation themed mini cake.

How does it make you feel when people around you are eating something you are allergic to?

It makes me feel uncomfortable and unsafe.  I do worry about myself, but I know what I cannot eat.  I actually worry more about my brother because he does not understand.  I worry about people eating around him and then sharing.  I also need to make sure they do not touch his toys. 

Mommy’s thoughts:  He tugged at my heart strings yet again by letting me know that he felt a responsibility to keep his little brother safe.  That is a lot of weight and worry on such a young man's shoulders.
Our little one eating food we prepared from home.  It offers peace of mind.

Do you know how to use your epipen. 

“Yes, I would use it if there were ever an emergency.  I could stab it in my leg and then count to ten.  Then I would use my asthma inhaler and call 911.  I would do the same thing for my brother too”.

Mommy’s thoughts:  We are working on his ability to self-carry and self-administer.  He is showing signs that he is ready by asking more questions, being more responsible for his medical needs, and he has been advocating for himself more.  I am proud that he is starting this step towards independence.

Look at the innocence in this picture!  I hate that he needs to understand life and death as much as he does!



Which allergy scares you the most?

"Both eggs and fire ants scare me equally". 

Mommy’s thoughts:  Me too baby, me too!!!  And for my littlest one I fear his anaphylactic food allergies of eggs, peanuts, and tree nuts.  For myself, I fear fish and shellfish. For daddy, I fear coconuts, pineapples, and pears.   And while they are not anaphylactic food allergies - I know how sick you and I get my little one- so I fear dairy products and gluten!


What does it feel like when you have an allergic reaction?

It makes me feel like I am going to die.  I get really scared.  When it first happened I felt like I could not breathe.  But, honestly, it has been such a long time since a reaction I do not remember it well…. I just remember feeling like I would die.

Mommy’s thoughts:  There are no words to explain how a mother feels to hear these words from her child… but this is not the first time I have heard him say that.  When he first had his anaphylactic reaction he would cry that it felt like something heavy was sitting on his chest while holding him underwater until he could no longer breathe.  We have worked through his nightmares... admittedly, I still have them once in a blue moon.
Happiness... I wish this was all my babies (and the rest of the children in the world) knew.  Happiness & love.


What would you like to teach restaurants about food allergies?

I wish restaurants had an electronic scanner and I could scan something I want from a menu with a smart phone and see if it was safe.  It would be awesome if I could put my own allergies into the scanner and it would let me know if I could eat something or not.  I think it would be a lot faster than waiting on other people.  When we eat out we usually have to wait a long time for our food. 

Mommy’s thoughts:  Not a bad idea kiddo!

Until then sweetheart, we will continue to make safe foods.

What do you want the world to know about food allergies?

"I want people to know not to eat food all around the parks, but to eat at picnic tables and then wipe then hands off so they do not get food on the playground.  When people are done, I want them to know they need to throw away their trash.  I want them to know their contamination of people’s allergies can kill people.  I also wish I could have spy cameras around the world so they could capture people being bullies to people with anaphylactic food allergies.  The police would be able to teach them it is wrong so they would learn not to do it anymore."

Mommy’s thoughts:  This happened about 2 to 3 months ago.  He brings it up often.  It really did bother him.  Sadly, we were pressed for time and would have only been at the park for 20 minutes. There was no time to choose another park and head there.  I have discovered this is a common theme among food allergy parents.  We all agree, we just leave and head to another park. 

This is one of my all time favorite photos.

How could people learn more about food allergies?

"I think they could read a book or talk to you, Mommy.   But, I think I know the best way people could learn!  I think that people should have to pretend for a week that they have to eat like us.  If they had to eat like us then they would know what it feels like when they cannot eat things too.  They would also need to pretend to get sick if they made a mistake.  Maybe then people will understand it better."
Mommy’s thoughts:  I love the way this little man’s empathetic heart works.  I challenge you my dearest readers without food allergies, to try just what he said- no eggs, peanuts, tree nuts, shellfish, fish, or fire ants. I would love to hear back from you if you decide to attempt this challenge.  The best way to understand a person is to walk a mile in their shoes. 

Will you try to follow in our footsteps?  Help us change the world- one day at a time, one person at a time!

Sunday, May 12, 2013

A Mother's Gift

My oldest baby woke with excitement and declared Mother's Day was his favorite holiday because it was a day all about his Mommy! How sweet is he? Then has asked me what I wanted for Mother's Day.


As a Mommy of two beautiful boys this is what I wish for today and everyday my sweet sons:


I want you to both live long and healthy lives.  I pray everyday for a cure for food allergies, but until this day happens, I pray for more compassion from the world.  I hope that we have taught you all of the skills necessary to keep you safe.  I pray that you have mastered self-advocacy skills and non-food related traditions that you can pass on to your children.  I pray that the world continues to change and understands what is needed to include you, my two beautiful boys, and all of the children with life threatening food allergies.


I pray that you have a love for life and marvel in the beauty of nature all around you.  I hope that you remember that everyday is truly a beautiful gift from God.  I want you to look at every sunset, mountain, and ocean and stand in awe of its grandeur.  I also want you to look at each snowflake, sunflower, and blade of grass and be just as as captivated by its splendor.  


I smile now as I watch you throw rocks into the pond.  I love to sit back and watch you innocently create a ripple effect in the water.  I love to see the excitement shine in your eyes as you are playing.  I pray that you will one day understand that every action you “throw” at the world will cause a ripple effect in your life and will extend beyond and into the lives of others.  I hope you remember kindness, love, compassion, and empathy.  I pray that will always live by the little mantra you said to me just days ago, “Mommy, I can change the world.  One person at a time, one day at a time!”  Oh my sweet boys, may you always have such unguarded passion!

I love the little wild flowers that you both randomly bring me while in the middle of outside playing.  I love the sweet handwritten notes and pictures you excitedly bring me when I come home.  My heart smiles when I see a cute picture scrawled in your handwriting on the mirror in steam. I hope that when you grow up, you will always remember these moments of showing people how much you care. These actions may seem trivial my little ones, but it is all of the little things in a day add up to one big thing.  I pray that you will treat others as kind as you remember to treat your mommy now. 


I pray that you find a love of your life that balances your personalities; like your Daddy has been the inspiration to my art and the music to my song.  I hope that you watch all of Mommy and Daddy’s hugs and holding hands- and though you groan and roll your eyes now or giggle and try to push us apart - I pray it shapes an expectation of what love in a marriage should look like.  I hope you can grow up to be the kind of man your father is-loving, kind, compassionate, empthetic, passionate, knows when to fight and when to let go, can balance a baby on one hip and fix a car with another.  I hope that you both remember how much he loves you and me, and you are able to love your spouse and children in your lives’ so fully. 


My little superheroes, I hope you always look towards the future and try to make the day a little better, someone else’s lives’ a little brighter, and always strive to “change the world one day at a time, one person at a time”.  May your passion for love and life always shine as bright as it does today.


I could not be more proud of you both.  Thank you my sweet boys for the gift of being a Mommy to you!