Catching Up!!!

I cannot express how much it meant to me that so many of you have reached out to me and wanted to check on my little family.  I know I have not been active in my posting lately.  I have experienced some life events that have left my heart in my throat and I have just been so emotionally raw.  When I write, it genuinely comes from my heart.... and it was just a little too much.  You asking about us has meant the world to me.  I thank you from the bottom of my heart for your concern and outpouring of love.  Our global allergy (and celiac and developmental delay) family is amazing!

We have had a very blessed year. It has been a difficult year filled with much sadness and fear- but a year filled with God's love and blessings.

I adore my husband and I am blessed that he is with me and healthy. I am more in love with him today that I was yesterday... and I will love him even more tomorrow.

My littlest dragon trainer is not so little anymore and is getting bigger every day. He is learning and thriving. I am very proud of the little man he is growing up to be. He still has such an amazing and nurturing heart. His deep love for his brother is so special and almost too much- he lets him get away with more than a brother normally would and always comes to rescue him from getting in trouble! He has such a wise little soul about him. He understands things too deeply sometimes. He has such a quick, intelligent wit about him! He loves to quote movies at just the right time to entice our laughter. He is also painfully shy and is starting to worry about others perceiving him as cool (sigh).  He also is out little artist!

Our littlest busy Bee has made strides in leaps and bounds since I last blogged. He seems to understand so many new concepts now! He has developed his own opinions and is quite clear on letting his opinions be known. He now has a highly developed sense of humor and has us laughing all the time.  He says a lot now.  We understand about 50% these days.  I yearn for a day we know everything his little heart wishes to communicate.  Until then he is patient and repeats himself twice, then he growls at me like a monster and tries to show me what he wants.  As a mommy, that is difficult and feels like I have failed him every time.  We work on saying it, then I add it to our picture communication board until he can voice it more clearly.  He loves to read books. I cherish every morning when he climbs into our bed with several books in his hand, crushing every rib I have with his elbow, pulling about 10 strands of hair out, and knocking me in the head with the corner of at least one his beloved, chosen 5-10 books, so that he can nuzzle his way between mommy and daddy for some morning cuddles and a few stories to start off the day. This is a cherished morning routine.  I wish I could freeze time and thaw it out a little more slowly.

Since so much time has passed and a photo speaks louder than words I will try to catch you up :)

Our oldest is fascinated with the ocean's beautiful creatures.

 

We took a field trip to the airport to go with our France unit "The Glorious Flight"

 

 

 

We learned to quietly watch some of God's beautiful creatures.  I wish I could remember all of the amazing questions that were asked and answered during this time.  I think they could have laid here for hours!

 

Our BUSY Bee fell in love with penguins!

 

 

 

We have crossed MANY bridges....

 

Climbed several mountains....

 

and been in some tight places this year....

 

 

 

as a result.......

We've learned to see rainbows in the oddest places....

 

.....gained a new perspective.......

 

....and learned to look up more often and thank God for all of our amazing blessings.

 

 

 

 

We've let go of little things and we've focused on....

LOVE.....

 

LOVE....

 

LOVE!!!

 

 

 

 

 

 

 

 

You know you are an allergy parent when…

• You wake up every morning praying that God looks over your children’s health and keeps them safe all day and thanking Him for watching over them throughout the night.

• You learn to cook in bulk and freeze delicious cakes, cookies, pancakes, etc that are free of all of your children’s unsafe foods
• You classify foods as “safe” and “unsafe”
• You wash down every table, seat, and surface area that may possibly be contaminated with other children’s foods and leave the place cleaner than you found it

• You are aware of and react to every new bump or red mark on your little one’s body
• You are ready to pounce like a ninja at anyone that looks like they are about to feed your little one food
• You find yourself bewildered that you have to fight so many in society for your children’s safety
• You patiently explain food allergies, anaphylaxis, and epi pens to anyone who shows interest in your children’s needs in hope of planting a seed of compassion
• You are overwhelmed with gratitude and moved to tears when a friend calls you up and asks you how they can make a party 100% inclusive for your children

• You secretly cry when a family member openly says they cannot really be involved in your children’s lives because they cannot handle the responsibility of keeping them safe
• You hold your breathe when the phone rings and they are not right beside you
• You will not leave them in anyone else’s care to drive more than an hour away…just in case
• You feel hurt and anger at knowing your children are purposely not asked to birthday parties because either the parents do not want to deal with "those allergy parents" or they are too fearful of taking on the responsibility of your children
• You happily celebrate (and maybe wipe away a tear or two) with your children the first time they can eat cupcakes in a bakery (thank you Babycakes NYC)

• You say, “it’s only vomiting and diarrhea… it’s not that bad!  They will be ok!” and are honestly grateful there are no hives, wheezing, or loss of consciousness to accompany it!
• You have held your child close as they cry on your shoulders about yet another unfair event and you are able to remain strong and positive for them…only to sob once they have gone to bed
• You feel angry that EVERYTHING in life seems to revolve around food- it is at school, parks, amusement parks, stores, even your local neighborhood pool.
• You do not (ever) leave the house without at least 2 epipens (for each child), inhalers, benedryl, ointments for itchiness, safe sunscreen, sanitizing wipes, and safe snacks…oh yes, and the keys!

• You hear your little one’s voice ask if their little brother will die when he sees him react to a food play in your mind over and over again

• You learn to decorate cakes
• You swallow your anxiety in order to have everyone around you not chastise you for being ridiculous and over the top
• You learn to appreciate the little things
• You attend major hospitals for your children's medical needs and you know to appreciate that they "just have food allergies and asthma"
• You see dangers in toothpastes, shampoos, conditioners, sunscreens, playdough, glues, fingerpaints…. because you know that all of these contain one or more of our children’s life threatening food allergies
• You are in awe of the compassion your children have
• You know your children have "old souls" because they understand too much

• You feel a little pride that your little ones are happily gobbling up sweet potatoes, broccoli, and cucumbers for dinner while other children are whining about not getting chicken nuggets for the night (is that one just me?)
• You feel a little twinge of jealousy as you watch the other child safely eat those unhealthy chicken nuggets
• You are blessed with a tight knit community of fellow allergy families around the globe- and you genuinely love these families & pray for their children!
• You cry for weeks over another child who lost their life to a food allergy and you grieve for their parents and siblings.
• You get hurt that when you talk about this child or post about it on Facebook that most people do not comment and you wonder if anyone else hears your pleas to help
• You understand that it really does take a village to raise a child 
• You really feel appreciative when people remember your children's needs and go above and beyond to help them.
• You go to bed every night thankful that God kept them safe another day, pray for their health tomorrow, and the wisdom of those around them

• You know to appreciate every day and love with all your heart

It's the Little Things in Life!

My sweet readers, I am so sorry that I have not been blogging lately.  One day I wil write more about these last few months… but for now the heart is still too raw.  We are all okay, my darling husband is still the love of my life, and the children are growing and healthy. 

 

Tonight though, I cannot stop smiling about some of the accomplishments our little men have made.  To many of you reading this, you will think it is menial.  For my husband and I, we have learned to count our blessings- big and small. 

 

For all you mamas and daddies out there with preemie babies or babies with developmental delays you know to appreciate every accomplishment.  Our baby bee goes to therapy 3 times a week. Due to his life threatening food allergies, his rewards for doing a good job during his session is often times stickers.  Stickers are stuck on our clothes, on the couch, on the floor, and on the now ruined, side table.  Stickers are everywhere!

 

So the other day I quickly wrote his name on a piece of paper and placed it on the wall and said, “Baby put all your good boy stickers here, ok?” I then had to rush out the door for work. I was not able to go through my normal show him once, role-play, then let him try it independently routine.   I left knowing it would need to be reinforced, but feeling content that a tiny seed had been planted.

 

I came home to this 8x10 paper filled with stickers!!!  New stickers from today’s therapy were on the paper…along with every single sticker he could find and peel from other surfaces around the house. I was amazed!!!  I asked my sweetheart if he had showed him how to do it.  My honey smiled a huge smile and said, “No!  After you left he started doing it on his own!”  

Playing with another sticker before putting on his paper!  I love capturing their silly moments!

 

 

Our tiny little Bee is showing so much comprehension these days.  We seem to only need to talk to him once and he understands so much more.

 

So tinight, we smile about this amazing milestone, we count this as one more miraculous blessing, and we then pray for his ability to articulate his own thoughts and feelings soon.  Feeling very blessed, indeed!

 

Happy Birthday My Darling Husband!

Today is a very special day in our household.  Today, my sweet husband was born and we celebrate his birthday.  As yet another year rolls by, I find myself overwhelmed with how much I love this man.  Every year I am sure I could not love him more and every year I have a million other reasons to adore him. 

I met my sweetheart when I was 20 years old.  We feel in love instantly.  I know it seems cliche', but it is true.  We both had life plans that did not involve meeting the love of our lives at that time.  He was off to teach scuba diving in Fiji to have a little adventure after serving our country in the military for years.  I was very focused on college and my professional growth.  He asked me out for dinner, admittedly after rehearsing plans to say goodbye and never see me again.  I said yes when I really had been planning to say no.  It was from that moment on we were truly inseparable and years later, we still are!

I stand back today and look at all we have been through in our youth and I am in awe of how much we have been through together and how very in love we still are.  Everything we have been able to accomplish is because we have each other.   

My hubby is the love of my life, my best and closest friend, and my soulmate.  In good times and in bad, he is the person I want by my side.  In good times, I love to laugh beside him and the laughter in his eyes makes that moment all the more special.  He really has the ability to make me laugh- head back, eyes closed tight, uncontrolled laughter, filled with a freedom of being completely me by his side.  In bad times, he is my rock.  He is the one I cling to when life just does not make sense.  Just being beside him, lets me know things will be okay.  My darling husband is my balance.  I say it often.  He is the yen to my yang.  Together we create a beautiful harmony.

It is because of this amazing man that I am a mother.  He made me a mommy.  Is there a greater gift the man you love can give you?  It is because of his life and his love that I became a mommy.  It is overwhelming to think about that kind of passion and love between us.  My heart feels like it could burst.  He also helps me be the very best mother I can be to our children.

When I look into his deep brown eyes, I see the same love I give, being given back to me.  When life is falling apart around us, my darling husband keeps me as his priority. My sweetheart just went through a serious surgery.  When he awoke, one of the first things he said was, "the surgeon continued to communicate with you throughout the surgery right?  I told him you would need that.  That I knew you would be worried."  When he was hurting and in pain and scared himself, it was me he was most concerned about.  How did I get so lucky? 

Watching my darling husband love our boys is the icing on the cake.  He wipes away their tears.  He makes them laugh.  He is their teacher, their playmate, chauffeur, coach, speech therapist, occupational therapist, feeding coach, physical therapist, nurse, doctor, the man that can fix anything, the one that can make it all better, and the reason they feel safe all night.  He is their superman.... and mine too.

I cannot love him more and this beautiful life we have created together.  I love this journey that we are on.  I love that after all these years, we still hold hands everyday.  I love that we still say I love you and mean it from the bottom of our hearts. 

So my beautiful husband, Happy Birthday darling!  I pray this year is the best one yet!  Geronimo!!!

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!) 

THANKS DISNEY FOR TAKING GOOD CARE OF ALL OF OUR ALLERGY BABIES!!!  YOU'RE NUMBER ONE!!!

 

 

 

 

 

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!

 

 

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. 

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!