Thanksgiving in Vermont

Thanksgiving in Vermont

This is our first Thanksgiving in the Green Mountain State. It has been like a pleasant dream living here. The people are incredible, the fruits, vegetables, and meat is amazing, and the overall quality of life is beyond anything that we have ever experienced.

We’ve been living in our home for two months now, and each day I fall a little more in love with it.

This space is sacred to us, and it is truly healing to the soul.

Dom’s mom and dad came up for Thanksgiving and stayed a few days. It was great to see them, and for Simmi to get to spend time with grandma and grandpa. The last time we had Thanksgiving with them was seven years ago before we left for New Mexico.

While there were a lot of *firsts* happening for us in Vermont, among the most significant was our decision to remove any and all food allergens from our home. Living an hour away from a hospital prompted us to make the transition to a completely allergen friendly environment for Simone.

What does that mean for the rest of us? Well, that means that the foods that one would normally eat can’t be brought into the home, and all meals are allergen free. We used to allow dairy, tree nuts, eggs, and even wheat bread and products into the house for those who ate them, but now we maintain a very strict no allergen policy in our house.

Will you die if you come here and you can’t eat stuffing for Thanksgiving? How about those dinner rolls? Cheese and crackers? No, you won’t die, AND you might find that the foods we prepare are extremely gentle on the stomach, full of flavor, nutrient dense, and delicious.

On our menu for Thanksgiving 2015:

  • Stonewood Farm Turkey: This turkey definitely gave us a run for our money. It was flavorful, juicy, and delicious. I say “a run for our money” because last year we raised our own turkeys. Ours were spectacular. Stonewood came really close. We needed a fresh turkey that wasn’t injected with any kind of solution. Have you noticed that if you go to the store to purchase a turkey (even organic sometimes) it will say that the turkey has been injected with a solution of water and broth and natural flavors. If a product doesn’t declare the exact ingredients, we don’t purchase it. We don’t take any chances with reactions. Simone had a very bad reaction to store bought turkey injected with a solution. Never again!
  • Straight up roasted sweet potatoes: No need to add marshmallows, or other things. Just a little coconut oil brushed on and roasted up.
  • Roasted turnips and sausage
  • Smashed rutabaga
  • Honey glazed carrots
  • Fresh cranberry sauce
  • Root vegetable biscuits
  • Pumpkin pie

The food was delicious, conversations were light and pleasant, and it was the most stress-free Thanksgiving we’ve had in eight years.

For eight years we’ve stuck to a protocol for doing dishes, preparing food, and even had schedules for when we ate. Because Simone’s food allergies have always been so severe, we would prepare her food first, sit with her while she ate, and then when she was finished, we’d prepare our food. Sometimes we would prepare our food right after we made hers, and then we could eat, but in her early years, we couldn’t take a chance of even having a little cross contact with food. It was less stressful to feed her first, and then feed ourselves.

This type of protocol led to HUGE amounts of dishes, going through 5 or 6 dish rags and drying towels per day, constant hand washing before and after touching food, and worse of all needing to police everyone in the house. That’s the most stressful by far.

Dom and I are always questioning one another about our hands, face, dishes, foods, labeled items in the fridge. Communication is of the utmost importance. It might seem weird that we would question one another about our actions, but there are times when even WE slip up and stick a spoon we just used to stir coffee and cream, with something that belongs to Simone. Have you ever done that? Just innocently used the same spoon from one product to another? A habit like that could cost Simmi her life, so we don’t do it. BUT! It can happen, even with us being so experienced in how to keep Simone safe.

When we removed ALL allergens from the house, the food policies and protocols flew right out the window! Anyone can do dishes without being taught. In the past, we had a few designated dishwashers in our house because if dishes weren’t done properly, Simmi would break out in eczema or have a reaction. Now? Anyone can do the dishes. I don’t need to be hawkish over everyone eating something that could kill my baby.

We used to have to worry when food came into the house that she was allergic to. Especially if the person visiting wasn’t familiar with our policies and protocols. We would need to hover, always watching for those stray crumbs and hands filled with butter or other allergen food to make sure they never come into contact Simone before washing their hands. Walking around with a napkin and bread would nearly cause a heart attack in me. Crumbs where my little girl walks means that little offending crumb could cause a BIG reaction. Yes, it’s that bad.

We once had a family member walk into our house with an open can of peanuts. He was not only eating them before he came into our house but used his peanut oiled fingers to open the door to our house. Shoving peanuts into his mouth, we all freaked out and asked him to leave. The floor and doorknobs needed to be properly cleaned. If Simone would have opened the entrance door after he touched it, she would have gone into anaphylaxis.

For so long we tried to accommodate everyone’s needs while keeping Simone’s needs front and center. When the hospital is so far away, satisfying everyone else’s needs takes a backseat and allows others to experience a new way of living for just a short while visiting us. It’s weird that for eight years we tried to make everyone who came to visit feel comfortable when we were screaming inside. It’s not their fault that our child has so many food allergies right? Yet, we often went beyond accommodating when it would have been just as simple to just ask our visitors to partake in the foods that Simone can eat. This is her home too after all. Why not be more inclusive? I’ve always looked at our situation from the perspective that this is just how she needs to learn to navigate the world. I never truly looked at it from another angle…her angle.

What would be the problem in others sharing the food she can eat? For eight years we have purchased or allowed food into our home that SHE could never eat. I’ve watched her sit at the table watching people eat things that could kill her, and yet not one person shared a “Simmi meal” with her. How strange right? To accommodate a visitor, but not our child? My stomach is turning as I write this because the realization that we’ve done it all wrong is beginning to creep into my soul.

How could I have been so callous? In believing that Simone’s food allergies were ours alone, I’ve put a huge line in the sand when it comes visitors. On one side is Simmi, and on the other side is everyone else. They can come across the line to see her, but she can’t cross the line to see them. You see, most people who come to see her or us aren’t allergic to the foods she eats, however, she is allergic to what they may be eating. Is it a terrible thing to have a meal with us if everything is allergen free? Can we offer a more inclusive menu?

Even though this does NOTHING for the real world outside of our home, it gives others the opportunity to share a meal with a child who can’t eat everything you eat. Your superpower is that you can eat food she eats. You also have the superpowers called empathy, grace, maturity, compassion, and love to walk a day in her shoes by including yourself in her life. Her superpowers are unconditional love and acceptance of your very being. All other superpowers she will acquire when those she looks up to lead by example. Compassion is a precious commodity, and empathy at times is akin to an endangered species. Grace is a lavish gift filled with the fragrance of love, and maturity contains the wisdom of how to employ all your superpowers.

Perspective is everything, I guess.

After having an allergen-free home for a month now, we no longer need to question one another about what food is “Simmi-safe” and what she can’t eat.

Here’s the rub….

Now that we are allergen free, bad habits of old are slipping back into our lives. We would never in a million years share food off our plate with her. We would never use the same utensil for more than one food we’re preparing. We would NEVER not wash our hands after eating and before giving her a kiss or a hug. Now? None of that seems necessary.

That will make us soft. Forgetful. Being less vigilant will cause us to slip up when we’re out at a gathering where there are offending foods. We still need to keep up our protocols despite the fact that the allergens aren’t present.

We’ve grown comfortable in our new stress-free bubble of bliss we’ve created here.

We shouldn’t. She’s going to school in January where food protocols I set in place will be super strict!

I can honestly say that we love eating allergen free. We transitioned to the Autoimmune Paleo/Protocol diet (AIP) and we haven’t looked back. My inflammation is still there, and Simone still has some eczema, but we’re getting there.

The balance comes when Simone learns that home is the place of absolute safety. She doesn’t need to fear death from eating something accidentally in our home. While she is at school, that is the outside world she needs to learn to navigate. We can keep hyper-vigilant with the food/medical policy and protocols we set in place and when she walks through our door at home, we can all drop our guard until the next day.

Here are some photos from this past week:

Getting Ready for the Next Challenge

It’s been great not really doing anything at all over the last week, and as my time off comes to a close, I am preparing for the next room on my list…Simmi’s room. We’ve all ready painted her room and it has new carpeting, but her list of needs is great and I don’t want to wait any longer to get her room done.
Simmi has some special needs and getting her into a more comfortable environment will help her to thrive and learn. We’d be here all day if I were to go over everything that she has trouble with on a day to day basis, so I’ll keep this entry as short as possible.

The first and foremost issue we deal with on a daily basis is Simmi’s food allergies. She has multiple life threatening food allergies that include peanuts, milk, soy, wheat, eggs, tree nuts and dogs. Dishes must be washed well, and we must be very careful throughout the day with cross contamination. She has a neurological speech disorder called Childhood Apraxia of Speech, as well as having limb and global apraxia. Simmi isn’t like other three year old children…she is more like a two year old (this is not reflective of Apraxia but something uniquely her). This poses a very difficult problem for us as we think about her going to school someday. How do you send a child with life threatening food allergies to school when she has no concept what so ever about foods she can’t eat, and has the attention span of a one year old baby? She is completely clueless as to why she can’t eat what we eat. I wish it was as easy as just explaining it to her. Anyway, at this point we’ve resolved to give her the very best home environment we can with the hopes of someday soon being able to have playmates come over. If we can’t take her to the kids, well, the kids will have to come to her! LOL Setting up an environment where she is free to be herself and still be safe is a goal for us. I would love to see her go to school, have friends and enjoy being who she uniquely is, but for now it is a day by day, moment by moment existence that we live.

If I can sum up her issues with one sentence, I’d have to say this…

“Simone’s brain and body betrays her on a daily basis.”

Most of the time she can see, then she can’t, she has spectacular hearing which can disappear if she is viewing something, she will be walking and just collapse sometimes as her legs give out on her, she’s good with her hands and then all the sudden she can’t even bring herself to do a task. She has extremely high energy which is short lived. Its almost like she goes super nova. How frustrating for her, right? She can say some words now, but they seem to come and go. As I said before…her brain and body betrays her.

Many of the things we are doing in the house are for her benefit. From the colors we choose in the main parts of the house, to the little sparkling things we’ve added to help her with her sight. We’ve painted our hallway walls with a paint that has a sparkle to it, so that as she walks her brain will pick up the little glimmers. The stainless steel refrigerator, as well as other things that will be incorporated later are all for her visual needs. Controlling the light that streams into our house is another thing that we need to be mindful of.

Her room was painted white with a silver sparkle dust in it. When the light hits the walls its almost as if the walls are twinkling and moving. I’ve designed her room with play and therapy in mind, and I’m really excited to start this project. When we’re done with the complete design, we’ll explain what we’ve done and why. We’ll also be posting it on Simmi’s website.

Our other projects for Simmi will include a Sensory Garden and designing half the courtyard in the back for her needs. She loves being outside, but we don’t have the proper shading in back to help her visual needs. The result of not having proper shading is super sensitized child who can’t control her impulses.

We love her dearly as she is, and improving her quality of life will help her be at ease with the world around her and at the same time it fills our souls with satisfaction and delight to watch her grow and thrive. We love you Simmi girl!