Many Adventures Await Us

So the other night I made an official countdown for myself and the kids. We were all somewhat shocked to see that we still have 99 days left here in Massachusetts. After the initial disappointment, I pointed out that there was much to love about our time here. My son admitted that he loves the small townhouse because we are always near each other. My daughters both love that their artwork is covering every single piece of wall space in every single room of the townhouse. We had to stretch a bit, but we found much to be thankful for. Most of all, Hayden's healing.

We have vowed to focus on the positive and my mission is to see and do all the things we will miss once we are gone. So that means more trips to the beach (even if we are in winter coats) where our dogs can run wild and enjoy the sand and water before Memorial Day, after which they are no longer permitted.

We have the most glorious, expansive woods smack in our backyard. Yesterday after school we followed a trail further than we ever had. The stillness was absolutley beautiful; surrounded by evergreens I looked up to the sky and thanked God for that exact moment. Me, my children and my dogs ~ all healthy, happy and together.

We absolutely love strolling along the streets of this quaint New England town. In and out of all the shops, picnics on the green. What now makes our time there even better is the variety of restaurants to choose from. Prior to Hayden being allergy free we would walk past and talk about the future when he would be able to go in and eat in any restaurant. Well the time has come and let me tell you we are determined to try every place, before we move away forever.

Last night sushi was on everyone's mind. Watching the joy radiate from all of us must be a sight, we are giddy and can barely stop smiling long enough to chew our food. When will we be off this high? ....maybe never & that's fine by me, it feels amazing!

We seem to have developed a habit after dinner in town...stopping in the ice cream shop. Heck, I figure after 10 years of not having it, we have a lot of making up to do!

As we countdown our time here and relish every last second of all the "good stuff" I am reminded to not wish it away too fast. Our time here has been challenging, healing, full of heartache and triumphs, none of which I would trade for anything. It has been during this journey that I have physically and emotionally pushed myself further than I ever dreamed possible, it has been during this time that my strength as a woman, mother and wife has been put to the test. I feel privileged to have had this opportunity and I know it is preparing me for my next big challenge... Possibly something more difficult than this.

Amanda

"Courage is not the absence of fear, but rather the judgment that something else is more important than fear." Ambrose Redmoon

Sweet Bliss

We just returned from visiting our dear friends in San Francisco & I still cannot find the words to fully describe our experience other than to say pure & utter bliss. The trip itself was phenomenal on so many levels, but the freedom to eat out for EVERY single meal is still blowing my mind!

I kept saying to my girlfriend, "Wow, so this is what it feels like to be "normal" and to eat anywhere your heart desires?"

My son ate at an Asian Fusion family style restaurant where we ordered several meals, passed them around and shared everything. I could not believe my eyes as I watched Hayden partake in this adventure. He was practically inhaling food without chewing and I often had to remind him to "sit down, breathe and chew." "But mom, I have waited 10 years for this." Yes my sweet boy, yes you have.

Then there was the seafood restaurant where he ordered fried shrimp and french fries with malt vinegar. When the cocktail sauce came he had no idea why his "ketchup" tasted so weird. Poor thing, he did not even realize it was cocktail sauce, how could he have known, he's never had it before. So many things that need to be explained, things most of us take for granted.

He ate at a French restaurant where he could barely pronounce his entree!!! The original sushi boathouse in Japan town was hands down his favorite experience. He tried octopus, tuna, salmon, ikura, but eel was his favorite.

A trip to Ghirardelli was a must as when we were there two years ago he was not able to have anything. He walked in looked at all the chocolate and decided to purchase a milk chocolate bar filled with yummy caramel. He was unable to speak after the first bite!!! Love, love, loved it! He takes after his mama I guess :)

One of the best moments was as we were walking to hail a cab, my husband saw a Ben & Jerry's and insisted that we go in. Hayden was beside himself with all the choices & finally decided on Phish Food, halfway through it he asked to trade with his dad who had caramel chunk.

There were breakfasts at diners, Beard Papa's pastries for the hotel room, lunch & peanuts on the airplane, Haagen Daz from the hotel for movie night, yogurt and a croissant from Starbucks in the airport. The list goes on & on & on!

Pleased, happy, free, not even ecstatic would touch on what I am feeling these days when I watch my sweet boy enjoy every new food or restaurant experience.

Who knew any of this was possible? Who knew with a little hard work our lives would turn on a dime? Who knew the freedom, the complete and total relief we would feel when we could walk into a restaurant and order anything? Who knew life could become so much easier, so much less stressful?

God knew & that is why he put an overwhelming, unexplainable fire in me to move across the country and do this work. God knew my little family could handle it and he blessed us with an outcome that has brought to me knees in thankfulness for His grace & healing. I am humbled.

Amanda

"Where there is FAITH, there is LOVE; Where there is LOVE, there is PEACE; Where there is PEACE , there is GOD; Where there is GOD, there is BLISS." ~ Sri Sathya Sai Baba

So Many Firsts!

Our last several weeks have been filled with so much joy! We are sailing through treatment with flying colors and can finally see the finish line!

There have been so many firsts for Hayden in the past three weeks. He has eaten his VERY first doughnut, pizza, bagel, fresh roasted peanuts, apple-cinnamon muffins, scones, breadsticks, onion rings, hamburger WITH a bun (a sesame seed bun to boot)!

Hayden best described his feelings by saying, "Mom, I feel free." Beautiful music to my ears!

We have eaten out twice in the past two weeks and he has ordered straight off the menu! For our family, this was a monumental and emotional moment. I captured many of these firsts on camera, but for reasons I cannot understand or explain I will not be posting them. Those photos are so personal, almost sacred to us at this time.

I feel is is imperative to restate that when we got here in late May he was anaphylactic to: dairy, wheat, rye, barley, eggs, sesame, peanuts & tree nuts with test results so high the two top hospitals told me his allergies would be life-long. He was rushed to the E.R. just two months before moving here because of sesame cross contamination that effected his breathing. And now only 8 months later he is eating all this food, without tightness or hives, not even any G.I. issues. Life truly does not get any better than this.

Another first is my CONSTANT baking! I am literally baking every single day because he needs to eat foods that have wheat, eggs and dairy at least twice per day. The foods that best combine all those ingredients seem to be baked goods. My little townhouse smells soooo yummy all the time & my jeans are getting tighter too!!!! 7 pounds in two weeks my friends, oh yes!!!! That's what baked goods will do. After 10 years of not having this stuff in our house, I am like a little kid all over again. But this week has been a bit better, I have shown some restraint and may even be growing a bit tired of all these sweets.

I also owe my little galley kitchen an apology. The day we moved in and I laid eyes on her I almost cried, wondering how I would ever function in such tight quarters. I cursed the lack of counter space and measly pantry. But now I realize just how good she has been to us... there every step of the way, for every bite Hayden has taken. I have managed more than fine and have created some pretty fantastic memories in there, the kind that will stay with me until the end of time. So thank you sweet kitchen for being part of the journey that has so well nourished and healed my boy.

Amanda

"Gratitude is an art of painting an adversity into a lovely picture." ~ Kak Sri

Thank You God

I honestly cannot comprehend that in 150 days we head home to Colorado! What an achievement, what a victory, so much to celebrate.

We can eat out, travel the world, go to parties without bringing "special food"; my son will be able to navigate through high school, college and the rest of his life without feeling fearful of food. Is this for real? Why does it all seem too good to be true?

I am seeing him eat all of these foods, which one year ago would have killed him within minutes. He is gaining weight and thriving like no other time in his life. I am more emotional about all of this now than I was before. I can barely talk about our journey without crying.

I am elated, but somewhat in a state of shock. The first several months I was living in a super heightened state of awareness, a fight or flight phenomenon. What I had done to my family was so drastic, what if it didn't work?

Well now that it has, I am coming up for air and what I am seeing and experiencing are almost too much for my senses. When your child is given a life long diagnosis and top doctors in the country tell you that this treatment will never work, it takes a while for your mindset to shift.

It is taking my head time to catch up with what my eyes are seeing... and once that happens, my heart (which has been so guarded this entire time) opens to the possibilities for my sweet boy... and this is precisely when my emotions come flooding out.

All I ever wanted and dreamed for him is happening. The joy in his eyes and the love in his hugs tells me I did the right thing. This has been no walk in the park, there have been very dark days. Moments where I truly questioned if I had made the right decision. Nights where I cried myself to sleep full of worry for my family. I often wondered how I, as one person, would be able to meet the physical, social, emotional, educational and health needs of all three children. There were days that I fell short, but the older children rose to the occasion.

What we have created during this journey will last us forever. I am connected to my children in a way that I never would have been without this experience. My husband has been my #1 cheerleader the entire time, never questioning me and my renegade ways. And for myself, I have learned about forgiveness... saying "I am sorry" and letting go of resentment.

What a journey.......... What an honor............ Thank You God.

Amanda

"What does not kill me makes me stronger." ~ Johann Wolfgang von Goethe

Feeling Victorious!

We went home to Colorado for the holiday break and spent two glorious weeks there. Life in my community is truly like living in Mayberry. It honestly does not get any better. The lifestyle is laid back, people are friendly and if someone beeps their horn, they simply want to wave to you! :) The people are highly educated, socially astute and progressive in their thinking. The climate, well it speaks for itself, 300 days of sun per year. And who can forget about those breathtaking mountains ~ Vail, Aspen, Breckenridge, Keystone, Winter Park, & on & on & on the list goes.

Two days ago, as I packed our bags to leave, OUR HOME, it hit me like a ton of bricks... the gravity of what me and the children are doing... this grueling, stressful, always overwhelming decision to move east & heal my son. Is it worth every sacrifice? Without a doubt. What am I most impressed with? My children's ability to be so resilient and to not even question why we had to go back for five more months. They are leaving everything they love behind, their amazing friends, community, school, home, cozy bedrooms & daddy. I have never been more proud to be their mama.

I recently designed a necklace for myself that is a circle with my kiddos names on it. The circle represents my unending love for them. I also chose a pearl which represents love, success and happiness, all of which have been a huge part of our journey out east. There is also a tiny heart to remind me daily to give love to them... unconditionally.

As I was driving (alone in the car) today I had a moment that went something like this.

"I cannot believe Hayden ate two bowls of whole wheat pasta for dinner last night!"

"Crazy isn't it that he brought Oreos in his lunch box today?"

"Unreal that he loves his chocolate yogurt smoothie every morning."

And then I heard his sweet voice, that said to me last night, "Mom, it's like I have landed on Mars. It's all so strange and exciting at the same time. Every time I taste new foods my tastebuds are overwhelmed and then I realize I like it & I want more."

YES! YES! YES!

IT IS WORKING!!!!!!! WE ARE DOING IT!!!!!

Amanda

"Man never made any material as resilient as the human spirit." Bern Williams

194 Days & Counting!!!!

As this year is coming to a close I could not help but notice that we have less time here in Massachusetts than we have already put in! We have been here 195 days & we only have 194 left!

Part of me is elated that we are half way through & cannot believe the progress we have made. Hayden is eating eggs every day ~ scrambled, hard boiled, baked in cookies, brownies, pancakes, taffy, meringues, and every other possible way we can think of.

He is also beginning his mornings with yogurt smoothies as his dairy dose is ever increasing to the point it was too much yogurt to eat in one sitting, so we plop it in the blender with some fresh fruit and he loves every last bit of it!

Hayden is just arriving at a full serving of wheat and must eat 3 servings per day. I have never seen a child so excited to eat pretzels every day. He is also enjoying whole wheat pasta and bread. Today I roamed the aisles of Whole Foods filling my cart with new wheat products for him to have. It was the most bizarre experience for me & I most certainly looked as if I had never shopped before. I stood in the cracker aisle with my eyes glazed over, unsure which crackers to pick. I mean after all I want him to love them. I grabbed so many items, read the ingredients, placed them in my cart & then back on the shelves, then back in my cart again. Is this really happening? Am I really taking wheat home for my son to eat? Everything about it felt so foreign. After-all, for the past ten years I had become the Whole Foods master of the gluten free products. I could walk through blindfolded and know where every single item was. I had been doing so for a decade.

We started introducing peanut two weeks ago and as the serving size slowly increases, you should see the look of pure excitement as Hayden tastes the peanut butter in his mouth. He is overcome with happiness and cannot wait to eat as much as he wants someday soon.

Sesame has been our trickiest of all the foods. We have been working on it for months and with continued mouth swelling, vomiting and tightness in the throat we have decided to keep the dose VERY minute, but still give it every day. Hayden no longer reacts to it, but we will not increase it until we have finished dairy. I do not want to overload his immune system. Knowing we are on a time frame to be out of here, I wanted to prioritize and felt that if Hayden still has sesame and tree nut allergies when we leave then those are easy enough to avoid if he needed to. Although, we have every intention of flying back and forth every two weeks to continue working with our healer until he is 100% allergy free. You don't start this intense process and quit before it's complete, at least I won't.

As for Hayden's broken wrist he is in a cast until Jan 6th. I am positive, with all of my heart this was an unanswered prayer. When Hayden went for his MRI I prayed that the images would be clear and we would be sent home to resume all activity. I was devastated to learn that it was in fact broke. "What? But he plays hockey, that's all he has right now, that's his everything."

I learned that time away from hockey has allowed my boy to have more time with his sisters, loving them and bonding with them in ways he could not if he was on the ice 4 nights per week. He has hugged me more in the past months than I can ever remember and we have laid together in my bed talking about life ~ something we could not do when he was getting home at 9 pm. each night. He is less tired, therefore less run down & I know this is a direct relation to how beautifully he has been dealing with all these foods. Even our healer says he is, at this rate, the fastest person to go through the process. Getting the cast off and returning to the ice will be bittersweet for me. I have learned to be thankful for the broken wrist, for it gave our family more than we could have ever received from hockey.

Amanda

"God's answers are wiser than our prayers." ~ Unknown

Lessons Learned

As we celebrated Thanksgiving last week in Atlanta with family I was overcome with just how much we have to be thankful for. This year, more than any before I truly appreciated and gave thanks for health. Last week a friend lost his

3 year battle with brain cancer and it brought me to my knees as I questioned why his children will grow up without him. I cannot make sense of why these things happen, other than to believe that death is a chance for the rest of us to appreciate life, to make changes for the better and to truly live in the moment.

This

is my m

oment to appreciate and honor all of my children.

As Maggie's language rapidly develops I am continually in awe of her resiliency

and determination. She is honestly THE happiest little girl I have ever encountered. She faces the world with

optimism & courage

every single da

y. You cannot be around Maggie without having a huge smile plastered on your face. She radiates when she smiles and it truly is contagious. As she hears herself talk, she will often stop and say, "I hear Maggie talking." She is practically overwhelmed by the sound of her own voice and the fact that others are understanding her now. She has taught me to never take my hearing for granted and to be joyful for even the smallest of triumphs.

Self-discipline, charm, integrity, silliness and confidence are the heart of my sweet Ava.

Whether she is on the soccer field, at gymnastics, playing piano, or on the theatre stage she

gives 110%

and always strives to do better. She loves to excel at everything and has a competitive flair that I must admit I love! Her heart is full of kindness and love whether she is teaching Maggie in he

r little school house, brushing the dogs or cleaning her room she does it with a happy heart. Despite desperately wanting to go home she never says it in front of her brother (only secretly to me) for fear of hurting his feelings. Ava teaches me everyday about loving more and worrying less. Her precious little voice is all I need to hear and I cannot help but be brought to the here and now. It is through her eyes that I see the beauty and magic

that this world has to offer.

My sweet boy Hayden, now ten-years-old is the most intuitive, compassionate and emotionally wise person I have ever met. He was born an old soul and has forever been the

best on giving advice to others. He is a natural born therapist! Hayden can carry on a conversation with

anyone, regardless of age or background. He particularly likes to sit next to a stranger on the plane and learn their e

ntire life story. He is fascinated by the workings of relationships and why people make the choices they do. He exudes charm and has a smile that lights up his entire face. His sense of humor and goofiness are at an all time high these days, even if I don't understand half of it. Hayden teaches me about saying what's in my heart, not what's on my mind. He forgives and loves with every ounce of his being. He is proof that healing can happen when your heart and mind are open.

I am thankful and honored for the opportunity to raise these sweet beings & to learn so much about myself along the way.

Amanda

"The soul is healed by being with children." ~ FYODOR DOSTOEVSKY