Recently an article was written called, "In Defense of the Teal Pumpkin Project."
I honestly didn't realize that people had a problem with this awareness project until this article came out. I basically posted about the project on my Facebook page then didn't research more on it or read any comments after any of the articles written about the project. I mean, who would be so cruel as to comment about an awareness project that is helping keep kids healthy and letting parents breath a sigh of relief that their kiddo doesn't have to feel different for one FREAKING day of the year!!!
It just makes me so very sad, that people could be so heartless. The Teal Pumpkin Project isn't something anyone is forced to do, it is something people can choose to do to show support for children and families who have different dietary restrictions, who have life threatening allergies, or even just to show parents which houses have treats that have something other than pure sugar (really, who doesn't like glow sticks? Which is one suggested idea for a non-food treat. I still love them as an adult).
One of the oh-so-nice comments left: "Awareness for children with food allergies? Good Lord! What's next? Awareness for people with athlete's foot? Or maybe awareness for people with chronic diarrhea!" REALLY?! Because food allergies are on the same level as athlete's foot?! I would say I wish they could walk a mile in my shoes, in the shoes of my child, but I don't. Because I wouldn't wish this journey on anyone. It is hard, sad, lonely, and scary and I wouldn't wish it to even those that suggest that allergies are natural selection, a form of Darwin's survival of the fittest (I might punch those people but I still wouldn't wish this journey on them).
Yes, I do have a "special little snowflake" (like one mean commenter wrote) but then again, we all do! All of our children are special and wonderful. They all go through challenges in life, some more visible than others. It is our job as parents, as people, as a community to help lift each other up and support each other, no matter what. I am so tired of people not understand how hard it can be to be so isolated and that just a tiny bit of kindness, of consideration, of inclusion can make a WORLD of difference.
Each person deals with stress and grief in their own way. Some find external things to help them cope. It might be food, drink, exercise, religion, etc.
For me it is to reach back to my Mennonite roots. Since diving into cooking traditional recipes and comfort food just isn't an option, I dive into a different aspect of my culture and dress in plain clothes. For much of Little Cub's life I have dressed in such a manner as it has helped me feel closer to God and has helped me deal with the stress of her medical conditions. The prayer kapp helps remind me to stay centered and to ask God for help with things I just cannot understand or cope with on my own. It is a reminder of hundreds of years of tradition and makes me feel surrounded by the love of all those who have come before me.
Recently, I stopped dressing "plain" for several months. I put away my prayer kapps and pulled out my old "fancy" clothes. I will fully admit that I enjoyed wearing jeans, makeup, and jewelry again. I also enjoyed going into stores without getting strange looks from people. But the main reason I stopped wearing my plain clothes was because certain family members seemed to be uncomfortable with my choice in clothing. I tested the theory by dressing in "fancy" clothes (jeans, a cami, and a plaid over-shirt) to see how they responded. The response was overwhelming. Everyone commented how nice I looked and how glad they were to see me in my "farm garb". It broke my heart because I realized my suspicions were correct. So I put away my dresses and prayer kapps and let things be. I didn't want to cause a bigger rift in the family then there already was- FPIES can tear a family apart and cause great misunderstandings and hurt, if everyone isn't on the same page or willing to accept that a child is sick with a strange and rare condition. It certainly wasn't something I wanted for my child and I have a very hard time to this day saying that I have a "special needs child" because saying that means that Little Cub really does have health issues that I cannot control. I know that the family members that are having a hard time with FPIES and with the restrictions it brings, aren't trying to be hurtful but simply just don't want to or cannot understand the significance and severity of FPIES. Especially because Little Cub, "looks fine. She is doing better, right?"
So rather than cause that tension and rift to be even bigger, I changed how I dressed.
Then this past week happened and while in the depths of grief, Little Cub came to me and said "hat", pointing to her prayer kapp. I put it on her head and she looked up at me so seriously and pointed to my head, "Hat". "Ok, Mommy can wear her hat too". I put it on and pulled out one of my dresses too. Instantly I felt like a huge weight had been lifted off of me. I felt better and could breath easier. I looked down at Little Cub and she smiled at me. I felt so grateful to have such a wise little one at that moment. She knew, even when I didn't, what I needed to feel better again.
I realized that in trying to appease others feelings, I had put my own to the sideline and that wasn't healthy.
In this long marathon of life, especially one where FPIES or any serious medical condition is present, we have to remember to take care of ourselves as parents. Finding something that helps you stay balanced and healthy is extremely important. So if you dress a bit differently, who cares?! You are taking care of yourself and your child through some very trying times and if wearing a prayer kapp (or eating chocolate, or doing yoga, or running actual marathons, or ___fill in the blank) keeps you sane then no one has the right to make you feel guilty for your choices.
Sometimes I get so caught up in navigating the tricky waters of FPIES and other mysterious symptoms that Little Cub has that I forget about all the other things in life. Food, symptoms, and poop are the basics of most of my conversations. Not great when you are trying to make new friends, unless they too are FPIES parents.
I forget some of the amazing little things in life. I haven't written in Little Cub's baby book in months. So many stories I want to share and have forgotten to write down. Like how the other day, Papa Bear and Little Cub were coloring together at Little Cub's tiny table. That was cute as it was but a few minutes later, Little Cub comes in the living room leading Papa Bear with coffee filters sitting on their heads. "hat" insists Little Cub with the biggest smile on her face. She hands me a coffee filter and insists that I also wear the "hat". Then we got up and danced in the living room together all wearing our fancy hats and laughing so hard that finally Papa Bear and I had to sit down. It was a precious moment.
Then there was the moment when I told Little Cub she was going to be a big sister. That there was a baby growing in my tummy. Her eyes got big and she patted my tummy so gently then she leaned over and whispered "baby" as she kissed my stomach. I burst into happy tears. It was such a sweet moment.
Then there are some moments I would rather forget. The phone call that informed me that my grand father's cancer was worse than expected and his chemo will be longer and more intense than expected. I felt like I was in a fog after that conversation. But perhaps it was also because I was having a miscarriage at the same time. I wanted to cry but I was too numb. For sometime, I had known I was pregnant but I also knew that something wasn't right. It was a feeling I knew all to well, something I had experienced before becoming pregnant with Little Cub. So I kept telling myself I was just sick or I had eaten something off or...I kept hearing "your pregnant" in the back of my mind but I didn't want to hear it, I didn't want to be pregnant if I was just going to lose this baby. Then I gave in and in and let myself get excited about the possibility of a new little one, I talked to Little Cub about it, and for one night I was happy. But sometimes, a lot of times, you can't help what happens in life.I was given one night of joy surrounding that new little life, then I had to give that little one back to God. I grieved and I am still grieving as my body heals. I know my heart will take longer to heal. But I am so grateful for Little Cub who has been putting up with longer hugs than normal and lots of requests to snuggle on the couch.
When you trial a new food with your FPIES child you know that there is the chance they will react to that food. And that reaction could be any where from a mild chronic reaction, a strong chronic reaction, an acute reaction, or an acute vomit to shock reaction that will land you in the ER. None of those are fun. OR they might be just fine with the food and earn themselves a new safe food or "safe" as it is called by many FPIES parents- sort of like a super awesome scout badge (that you can eat)!
Trialing a food takes time. Usually you try a food for several days in a row, then stop for 2 or 3 days, then add it back. Slowly but surely you are adding a bit more of that food each day of the trial. Some children, if they are going to react, will react right away and others will take 10 to 20 exposures before they react. That is why some parents don't know their child has FPIES because the food they react to isn't a "new food".
We have long suspected that spinach might be a chronic trigger for Little Cub. However, we took it out of her diet (and mine) at the same time that we took out a bunch of other suspected foods. We have slowly re-added each of those foods with success except for mangos. Mangos also seem to cause chronic symptoms- loose mucus stools, sleep disturbances, irritability.
So last night we decided to start re-trialing spinach. We started with a chicken, red pepper, spinach sausage that is one of Papa Bear and my favorite kinds of sausage- and a quick and easy meal!
Little Cub loved them just like her mama and papa. I felt like I was feeding my child poison with every bite she ate. I had to swallow my feelings, and smile and say "yummy" and "Nice job eating that." I checked the time 9:02 (yes, it was a late dinner night) and hoped that in 2 to 6 hours I wouldn't be woken up by throw up. I even had a towel ready and waiting, just in case. Thankfully, she slept, ok...she did toss and turn some but not as badly as she did with mangos (the most recent re-trial). Then this afternoon, she pooped, it was fairly loose, certainly not her baseline kind of stool, but not too horrible and with only a little bit of mucus. So we will keep adding a bit more spinach to her diet over the next few days and see if she really is reacting, which I think she is, or if her stomach is re-getting used to spinach and she will be fine with it in a few days. My gut is telling me this trial isn't going to get too much farther, but I am hoping that I am wrong.
I think the main problem before was that Little Cub's favorite puree pouch snack was a Mango, Apple, Spinach mix. Between the mangoes and spinach together, the "mild" symptoms (sleep deprivation for Mama Bear doesn't seem mild after a few days!) combined and became a lot more severe.
I guess we will see how she continues to do on the spinach. I will be headed to the store tomorrow to buy some fresh spinach add to our morning omelets...
Some days are good days and others, well, if little one didn't react to grapes I would be reacting for the wine.
A basket full of toys I had put away for a few months. That is what did it to us this time. At the bottom of that basket, a white rice teething biscuit. I thought I had checked all of her toy bins, boxes, and baskets for any left over food. I guess I missed one.
From across the room I heard the tell-tale sound of her bitting into a teething biscuit, I knew that sound anywhere, I looked up and flung myself across the room to grab it away from her little hands. She cried and said "MINE" loudly at me, to which I replied "NO, you cannot have this, it will make you sick." A tiny, tiny bit mark was in the biscuit, she had eaten some. Ok, sigh, I checked the time 11:32. I wondered if we would be dealing just with the meanies this time or if there would be vomit and diarrhea too. Within two hours she was a screaming, crying, biting, punching mess. She didn't take a nap and I was left wondering how long I could last without going crazy. Then she started to act happier and by dinner she was her precocious 1.5 year old self.
She didn't sleep well, but she didn't sleep badly either so I figured we were in the clear. Then came her diaper this afternoon. Visible blood streaking and a little bit of mucus. Dang!
We knew she was somewhat reactive to white rice, a chronic trigger, but it hadn't ever caused blood in her diapers before. Now, I know, white rice=bad news and that we really do need to stay away from it for at least another 6 to 18 months before we retrial it.
So lesson learned, white rice bad and check boxes, bins, and baskets twice (or three times) just to be sure!
I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.