Brighton eating a banana

When Chipotle Refused to Sell Me an Avocado for My Son’s Food Allergies


Brighton eating a banana
Brighton.

One evening, we were driving back from vacation. It was late and everyone was starving.

It is not easy for our family to stop for something to eat. Our fourth child, Brighton, can’t eat at restaurants due to cross contamination.

He has food protein-induced enterocolitis syndrome (FPIES). He was about 1.5 years old during this trip and had a handful of foods he could eat. We always bring his food with us, but with just having a few hours left in our trip, we were out of food for him.

We looked hard for a place to eat, trying to think of somewhere that would have an avocado or banana for our son. We stumbled across a Chipotle. Perfect.

We got all the kids out of the car and marched right in. After ordering everyone’s food, I asked if I could also buy an avocado.

Just one, whole avocado.

I explained that my child had severe allergies and he couldn’t eat anything there except for an avocado.

The cashier shook his head at me and said that he didn’t think he could do that.

“Please, I’ll pay $20 for just one avocado.”

I didn’t care what it cost, I just wanted my son to eat something. My eyes filled with tears as I thought about bringing all the other kids their food and having nothing for Brighton.

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I could tell this young man wanted to help me.

So he got his manager.

“Please Sir, I will pay anything for one avocado. I would buy him some of your guacamole but he would get severely sick. An avocado is all he can eat.”

And… the manager said no. We then fed our other kids while my husband distracted Brighton and fed him a bottle of his special formula.

And it broke my heart.

Thankfully, this doesn’t happen everywhere.

There have been many restaurants that look at me strangely when I ask for one banana or one avocado. But they always figure out a way to ring it up and serve it to me.

Sometimes I explain the situation. Sometimes I don’t.

Sometimes they cut up his banana and bring it to him on a plate.
It seems so simple and silly, but this makes our son’s day.

He gets to eat like everyone else.

Then he looks up at them with his big dark eyes, messy hair, dimpled smile, and says thank you.

And he means it.

More than any other child.

The fact that you brought him a banana on a plate may seem meaningless to you.

You don’t know his story, but you made his day.

You don’t know that he eats the same few foods over and over.

You don’t know that there have been restaurants that have refused to sell us one banana or one avocado because it’s not an item on their menu, although they clearly have it in back.

But you did something.

You helped our son.

You made up a price. You figured out a way to ring it up.

And you served it with a smile. No questions asked.

And we thank you.

Because you just gave our little boy a real life experience to be “normal” at a restaurant.
You filled his belly with food, and you filled his heart with joy.
We hope more people and restaurants can learn from your service and kindness.

Follow this journey on Mommy’s Love Marks

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. Check out our Submit a Story page for more about our submission guidelines.

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When a Teacher's Email About My Son's Food Allergies Made Me Cry



Young boy named Cayden eating a snack at school My son Cayden is 5 and in kindergarten. He’s no stranger to class parties
at the holidays, as he’s been in daycare and preschool since he was 2 and a half. He’s also no stranger to being excluded from these parties and from nearly every food-based activity at school because of his multiple, severe food allergies. He has a rare disorder called Food Protein Induced Enterocolitis Syndrome, or FPIES for short. Currently he has 12 known food allergies and can be allergic to any food he’s never had before. No test exists to see what he’s allergic to, other than feeding him something new and seeing if he gets sick.

I’ve become accustomed to sending every single meal, snack and dessert for him to school. He has a lunchbox half the size of his backpack for this very reason. And every time there’s a party or birthday, I send a treat box so he can have something special while the other kids eat the store-bought cupcakes and candy bars and pizzas that always seem to accompany these events.

This holiday party I was expecting to do the same, but an email from his teacher stopped me. When I read it, I started to cry.

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I wanted a party for Cayden where everything is Cayden friendly. Mrs. Sheets and I are going to go out and buy Mott’s 100% apple juice original, Lucky Charms, Armour Vienna Sausage original, sugar free jello strawberry cups, and classic Lays potato chips (yellow bag). I would like for a day where Cayden won’t have to worry about what other people have and where he can have everything. If you see something that would not work please let me know!! I tried to go on by what you brought to class for him and what was on the list of approved foods. You are more than welcome top op by tomorrow or Friday or both to ensure that everything we have is approved!!

It read:

I wanted a party for Cayden where everything is Cayden friendly. Mrs. Sheets and I are going to go out and buy Mott’s 100% apple juice original, Lucky Charms, Armour Vienna Sausage original, sugar free jello strawberry cups, and classic Lays potato chips (yellow bag). I would like for a day where Cayden won’t have to worry about what other people have and where he can have everything. If you see something that would not work please let me know!! I tried to go on by what you brought to class for him and what was on the list of approved foods. You are more than welcome to pop by tomorrow or Friday or both to ensure that everything we have is approved!!

His teacher and her aide also sent notes home with the other students saying all food would be provided for the party due to food allergies in the classroom. I offered to make cupcakes so the kids would have those as well.

The party was a complete success. Cayden was able to eat everything without fear, and this mom was crying happy tears at the generosity and care of my son’s teacher. She’s made this a holiday party to remember and has set the bar high for his future teachers.

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The Hardest Words I’ve Ever Had to Say, and How Saying Them Changed Me


There are many things in life that no one can prepare you for. There are things that words alone can not explain. The day I took my baby off life support was one of those times.

So many different people in the small crowded hospital corner, and yet no one had the words to explain. The Doctor’s words still echo in my mind after all these years. When I became pregnant, no one told me mothers might be asked to make such horrifying, heart wrenching decisions.

No one can prepare you for the mix of emotions you will experience after loosing a child. No one can tell you the right way or the wrong way to grieve. Mainly because such ideas does not exist, everyone will grieve differently. Its almost impossible to go from making a life decision like taking your child off life support to jumping into grief mode. No one will understand the responsibility that comes along with such a decision, unless those words are spoken directly to you. Unless someone else has to answer a question that is every parent’s nightmare, no one could possibly begin to feel your pain. Loosing a child is one of those unimaginable things for a reason.

It took days after my child had died  before I could fully understand what had just happened. I was stuck in shock for days, my mind full of fog. Even though the doctors had told me his chances of survival the day he was born, no one told me about this. About how to be someone I had no intention of being.

I had just finished setting up the nursery, not knowing in a mater of days I would be taken to the hospital by ambulance, followed by watching my baby fight for his life and undergo brain surgery shortly after his birth. I only got to hold him twice in the month he was with me, the first time was about two weeks after his birth. He was 2.4 pounds and full of wires. It was hard to enjoy the moment with so many others people around. The cords only stretched so far and the machines kept beeping. I sat in the chair and held him while I thought to myself this had to be a bad dream, I couldn’t possibly be there.

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The nurse took him from me after a few minutes and placed him back in his incubator to regulate his body temperature. I couldn’t help but feel cheated. Within the following days I got to change his diaper for the first time. I began to feel more like a mom. Unfortunately his health took a downward spiral which would lead me to the second time I would get to hold him. His body was not recovering from surgery and his organs were shutting down, his body was not accepting the ventilator to breath for him any more. The staff of nurses had been hand pumping air into his small little lungs for hours. All eyes were on me as I made the decision to stop his pain.

I remember there was so much noise, and machines were going off, conversations going back and forth between the hospital staff. Except for the moment I spoke. The moment I had to say the hardest words that ever came from my mouth. The room suddenly went quiet. At that moment I held my baby for the second and last time.

It was at that defining moment that the person I thought I was, would die along with him that day. As a part of me died, a part of me grew. I would forever look at the world through different eyes. I would have different dreams and desires. No one told me how much I would change, no one really could.

Because of that time in my life I would grow into a women with a better understand of myself. I will forever know the strength and courage that I hold within me. I will always know through tough times I can see it through, and I will always remember I have my very own angel watching over me.

A version of this post originally appeared on Special Parent1’s blog

Being the One Who Helps People and Learning When to Accept Help


Ever since I was a kid, I’ve always wanted to help people. I’d be the first one to get the newspaper for my dad to make a fire.  I donated every cent I had in my pocket to people ringing bells outside grocery stores for charities. (One year, I even stood ringing the bells, myself!)  And whenever somebody misplaced something, I was the first person to start looking for it.  Whatever I could do to make a difference, I would do it.

When I was 15, I was diagnosed with Asperger’s Syndrome. This form of autism can be hard for me some days. And during those difficult days, it’s OK for me to accept help from others. I may need an extra hand with keeping my room clean. Sometimes I need help at school or work because of communication issues. I can’t drive myself to many places on my own, and I must rely on my friends and family to help me travel long distances.

But none of this has changed my desire to help people myself.

I have made bracelets out of duct tape, and sold them to raise money for others with autism. I raised enough money one year to purchase an iPad with a protective case for a class of kids on the autism spectrum. Another year, I raised enough money to provide a scholarship for a child to attend an autism program.

I have also volunteered in various places for many years. In the past, I have volunteered finding books that people place holds on at my library. At my local chapter of The Arc, I helped in a class of 2-year-olds with autism. Currently, I help at Easter Seals making picture icons for kids who are nonverbal to communicate with. I also volunteer at my favorite museum, The Franklin Institute Science Museum, for their Sensory-Friendly Sundays.

I may be on the autism spectrum. And I may need help from others once in a while. But I love to help people myself, too. It just goes to show that even though some people might be different, they can still make a difference in the lives of others.

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Erin donating an iPad to a class of kids on the autism spectrum

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My Daughter's Response When I Worried What People Would Think of Her Service Dog


When you are the parent of a child with disabilities, you may often have friends forward you video clips or stories of children dealing with similar issues. This to me is generally a positive thing. It means that for one, someone cares enough to send you the clip or story. For another, it means your efforts to spread awareness of the condition(s) your child has are reaching people.

Recently, there was a really cool video clip sent to me of a service dog doing tasks for her handler who has postural orthostatic tachycardia syndrome (POTS). I was very impressed to see this intelligent dog helping out a young lady who needed the help.

I understand why the video was sent to me — my 13-year-old daughter, Carolina, has POTS. She was diagnosed months ago, and it has significantly impacted all of our lives. It causes elevated heart rate and she becomes really dizzy, very weak, nauseated, and she loses her peripheral vision. She has to drink two liters of water daily and eat a lot of salt to help lessen her symptoms, plus she takes medications to help as well. Unfortunately they do not take away the symptoms but do help somewhat.

Carolina also has Ehlers-Danlos syndrome hypermobility type (EDS) and it is a connective tissue disorder that causes a lot of pain and other issues for her.

Carolina is ambulatory and still tries to be physically active. She does wind up having POTS symptoms frequently, though, and often has to sit down or lie down. If we go out and she starts having tachycardia or increased symptoms, we often find a chair for her or a scooter if we are in a place that has one. If there is a lot of walking planned, we know she either needs a scooter or someone to push her in a wheelchair. We are a “medically complicated” family of four so her father and I often use mobility aids for distances or shopping ourselves, and her younger brother has some of the same issues.

girl lying on towel at beach

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It is frustrating for Carolina for her body to be slowing her down. Of course, her father and I want to do anything we can to help her gain back some of her sparkle as well as help her physically. I saw this video of the young woman and her dog, and since then I have been considering and then quietly looking into the prospect of Carolina getting a service dog. We do need to narrow down the field to breeds such as the goldendoodle or standard poodle, as my son has allergies. I am still learning about all of the tasks a service dog could do that would specifically benefit my daughter. It can be trained to open the fridge and bring water (remember she has to drink two liters of water daily), bring packaged snacks, bring a blanket, retrieve dropped objects (she gets lightheaded bending over plus her back hurts from EDS), open doors, and more I am still learning about. Carolina would greatly benefit from those tasks being done for her. I am told that only some service dogs have the instinct to alert to cardiac changes (such as when she is having tachycardia) but that it is at least a possibility. It would be miraculous to have a dog that could alert Carolina that she is beginning a tachycardia episode so she could lie down and hydrate, because Carolina is young and doesn’t sometimes realize it is happening until she feels dizzy, nauseated, and loses her peripheral vision.  So far she hasn’t fainted but she has seen spots and been really close to it.

Here is the dilemma, which honestly should not be one at all. There will be those who see her as “not that kind of sick.” Invisible illnesses can be so infuriating to deal with that way. I have been researching service dog agencies that train them, because the training is a huge undertaking that I know would be best not handled by us. One well known and highly recommended agency requires a $17,000 fee for the dog plus the training. Thank goodness the agency does give tips on fundraising so that families can ask for public support to help with the cost.

I have gone through a lot as a mom of children with medical issues, and while dealing with my own disabilities. First, I was dumbfounded that anyone wouldn’t believe what the doctors said my children had when they were diagnosed with things when they were little. Then I was hurt. I learned it happens with a lot of families dealing with special needs – that family and friends can be very unsupportive. Then I went through years of being insecure and not trusting my own opinions about lots of things and often asking others for everything from my hairstyles to proofreading help to medical opinions. I was not good at making firm decisions during that time. I was struggling with a lot of things and truly felt adrift. I was very depressed even though I didn’t see it that way.

Then came a decision where I felt I didn’t really need to ask for opinions, but I did anyway, because that was what I was used to doing. Turns out there was a huge misunderstanding, but it led me to realize I should never have felt the need to ask. I also realized I had grown as a person, and as a mother. My instincts are much stronger and I am much more grounded. I only actually needed to discuss things with my husband in that instance, and he agreed with me and had my back.

Now back to the decision about whether to apply for a service dog for my daughter. I have had the worry that naysayers who don’t see her at her worst will form opinions about me. I have thought some will see me as a gold digger, or “exploiting my child” even though this is something she could greatly benefit from.

girl lying on couch

I have spoken with my daughter about the fact that it will cause others to possibly view her differently. It was her words and opinion that snapped me back. “Mama, I don’t care what others think.” She has the most amazing personality. She does care about maintaining a good reputation, but if someone misunderstands or chooses to find fault in a situation where there is none, she says she doesn’t care and lets that junk go. She does get angry if someone is dismissive of her health conditions, but even at 13 she is quick to educate them, and do it accurately and eloquently. She does care about the opinions of those that are closest to her and she has strong faith so she cares about pleasing our Heavenly Father, but she says she doesn’t worry about the opinions of others that aren’t inside our situation. Carolina knows she could be helped greatly by having a service dog, so that is what matters.

That is also what matters to me. I have prayed about it, spoken with my husband about it, and spoken with Carolina about it. We are beginning the application process, and I am secure in our decision. That feels very, very good.

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When Your 6-Year-Old Has Become a Caregiver as Well as a Sibling


I started this blog to raise awareness mostly, about Alexander’s disease and what it’s doing to my son, Corry. But it’s also important to recognize the impact life-limiting conditions can have on other family members. My blog page is a place for my strong feelings. This particular piece is to recognize that often “the other child,” or children, from families similar to ours can be overlooked and undervalued. They don’t get the credit they deserve.

The guilt I carry for my daughter, Lily, is ever present. She holds so much on those little shoulders of hers. She has no choice but to weather this storm. The cards we have been dealt have seen Lily take on a lot more than she should have to. She can appear to be a happy, sociable child, full of energy, full of life — A typical 6-year-old girl. And yet she is worn. Tired.

I have many days where I crack. I have never been an emotionally easy person. I am especially fragile of late. When functioning on little sleep, an empty stomach and behind cloudy eyes, the smallest of difficulty can feel intense and overwhelming. I can damn well blow it all out of proportion. There have been times, too many times, that I have been a person I don’t want to be amidst my fear and anger at having to watch my son in pain, violently sick, unable to hold himself up, frightened at what is happening to him.

At the sight of his NG tube coming out just as we’ve arrived home from the trip to hospital to have it put back down already.

At the state of the house while I’m just sitting around staring at it all, not an ounce of energy to do anything about it.

During these times, I have said some absolutely unnecessary things to Lily. I have acted selfishly. I can resort to becoming a spoilled brat at the unfairness of it all.

She once gave me this response to my outburst: “It’s OK mom. You feel sad about all of this. I love you.” She cuddled me while I cried. I cried out of exhaustion. For release. I cried for the overwhelming guilt I had that she felt I should be excused for speaking to her that way, that she was coping with her emotion in a far better way than I was.

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Mostly, I cried because I couldn’t quite believe how absolutely amazing she is. How proud I was and am of her. She could see my weakness and run with it. She could make sense of my actions and not take it personally.

I feel sad that she has had to become so emotionally ready at such a young age, but also blessed that she has been able to do so and find the strength within herself to take this on.

Screen Shot 2016-01-02 at 4.26.13 PM

Lily is a sibling to Corry and a daughter to me, but she is also a caregiver, and a truly amazing friend. She’s a person who sees me at my worst and still shows me love. She’s a little, but very grown up, 6-year-old girl who I hear get out of bed in the morning and whisper to her little brother, “Come and play trains with me, so mom and dad can have five more minutes of sleep.” A sister who so often has to take second stance to her brother’s needs, but adores him nonetheless.

You are everything to me, lovely Lily. I hope that you know. I am here for you, as you are for me. Even when I have to be away from you, for appointments and hospital stays, and when I miss your school events and your activities.

When you can’t have your friends over to play.

When we are not together for your birthday.

When you have to go to stay with other family members.

When Corry has slept all day and therefore stays up later into the evening, while you stick to your routine.

When he gets to choose exactly what he wants to eat, even if it’s chocolate all day long, because anything for him is better than nothing.

I know it must seem unfair.

That at times you will feel hurt and pushed out. That you must feel sad and fed up with all of it. I will feel it too. It’s never my intention for you to feel bad. This was never part of my plan for you, or for Corry. It was not the plan for me or for Dad. But we must roll with it. Through these tough times we will be connected like no other. Together we can see through the deepest darkness.

I love you so.

A version of this originally appeared on littlehartsblog

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