Dear New Anaphylactic Parent-
First, let me say, I am so sorry that you are feeling so scared and vulnerable. I want to say, do not worry, it will be ok.... but we both know, life will never be the same again. I am writing to you from the heart of a mother who has been where you are today and still lives this life.
If you are anything like me, you grew up dreaming about what parenthood was going to be like. I dreamed of family traditions carried on, birthday parties with beautiful and creative cakes, and fun holiday events. I dreamed of being home room mom for my children's school and a friend to almost all the parents in my child's class. I dreamed of running around open fields of grass and watching them fly a kite and then sitting on a red and white checkered cloth and enjoying a picnic. I dreamed of flying out of the county at least once, cruising the cool blue seas, and camping out under the stars.
But, I am sure you never imagined feeling as fragile and alone as you do right now. You never pictured yourself frantically reading labels, searching the stores on what to feed your child, and fearing every moment that they would eat something, or touch something, or someone would kiss them and it would lead to potential life and death situations- that you were responsible to prevent. You never thought that you would stare into your pantry and see that it was filled with potentially fatal cookies or mac and cheese. You never thought you would categorize family as those that understood your child's needs and those that just didn't get it. You never thought life would be a constant battlefield to fight. But, this is now your reality, and the beginning of the rest of your journey in parenting.
I wish I was able to wave a magic wand and make your child less vulnerable to this world, consequently, making your heart less vulnerable too. I wish that your childhood devoted to dreaming and the months of pregnancy consumed with planning your ideal parenting style did not need be altered. I wish that I could tell you this would be easy. I wish I could tell you not to worry. I really wish I could sit beside you and hold your hand while you cry. As a mommy of two children with life threatening food allergies and life threatening sting allergy to fire ants, I cannot wave my magic wand and make it all go away, but I can offer a few words of wisdom and hopefully some lasting comfort too.
When our oldest was just a few weeks old he started to get horrible eczema. He had horrible diaper rashes that would bleed. He had horrible reflux. He also had reoccurring MRSA infections that we did not understand at the time. All of these were tale tell signs of the actual problem. One fateful day, I was feeling particularly domestic and decided to make scrambled eggs for my husband and our little one. He ate a few bites and then seemed to become
exhausted. I thought it was strange that he was unable to sit up and was "falling asleep". I actually brought him back to bed thinking he was getting ill and was exhausted (Mistake #1). Minutes later, I heard a blood curdling scream from his room. There was no mistaking that he was in pain. My husband and I both rushed to him and found him covered in vomit, hives, and still fighting to "stay awake". We rushed him to the pediatricians office (mistake #2- we should have called 911). We were then told he had an anaphylatic reaction and referred to a specialist in a few weeks and sent home with the instructions to not give him anything that contained eggs. I had no idea how to care for my child anymore. I had no idea how to feed him or fulfill his nutritional needs. I was at a loss of meeting his most basic needs. I was petrified and felt alone, but I honestly had no idea that this lifestyle would be a constant battle and what this lifestyle really would mean for us.
When I told family and friends about his food allergies, I was dumbfounded that I was not comforted immediately. Instead, I was met with disbelief and doubt. My own family members thought that it was impossible that foods- little tiny chicken eggs (...and later dairy, and fire ants and with our second child- wheat, eggs, peanuts, tree nuts, legumes, dairy, and soy)- could cause someone to "get so sick". Or people would think they were being helpful by saying things such as "oh, many people have allergies, they will be ok". The one that infuriated me the most was "well, they have to be kids! You can't just throw him in a bubble!" People I have always turned to throughout my lifetime, have hurt my feelings, infuriated me, and said some very ignorant and unintentional hurtful remarks. But, my fellow life threatening allergy parent, here is the brutal and sad truth, unless you have lived the life of a being a parent with a child(ren) with anaphylaxis, it is
impossible to understand. It is a constant and looming fear and it rules all aspects of your child's life, and thus your every thought revolves around their safety.
Some people will try to comfort you by saying things that will feel insensitive and often are insensitive. I think I have heard them all. "You just like to worry." "You are smothering this child and not allowing him to enjoy life! Let him LIVE a little. It is a little cupcake!!! A little icing never killed anybody!" (Unless the icing contains eggs- which most bakery's icings do... but I digress). When your are not looking, people may sigh, roll their eyes, or exchange a "knowing" look. But, if they knew,
really knew, they would hug you close and exclaim, "I do not know how you do it. I admire how hard you work at keeping your child safe. How can I help?"
Some people will say, "They are here and they are healthy and whole. You should not think about things so negatively." while the haunting question runs through your mind like a roaring freight train repeatedly, "Yes, but for how long?"
The reality is that food is all around us. It is in our friends and families' homes, in our schools, and at the park. It is often in the hands of people who do not know about food allergies, let alone that allowing their little cherub to run around with a half eaten peanut butter and jelly sandwich could potentially send your child into full blown anaphylaxis. People look at the cute little orange goldfish crackers and cannot fathom that their smiling faces could cause your little one's face to swell up in a mass of ugly hives and look unrecognizable. I have to believe that if they really knew and they really understood, then they would happily change to accommodate. But, my sweet new anaphylactic parent, that is not always true. Even with education, some people will resist that they should change for the sake of your baby's ability to breathe.
The reality is that food is deeply rooted to people's emotions. Food can be comforting, exhilarating, can bring back childhood memories, and even be sensuous. My husband's mother always made banana bread for vacations. A simple taste and it brings me to a simpler time in life. One taste and I remember the fun of the vacations, the safety of being with people I love, and of young love. My mother and grandmother always made potato soup for me as a child. One bite and I feel comfort and nurtured and loved- still to this day. Think about something that brings you comfort or love or brings you back to a happy time. Keep that thought for a moment, you will need to draw on that memory one day. Remembering will help you be tolerant. I too, have these strong emotional ties to food- and I am a mommy of two anaphylactic children. So, I often try desperately to understand the resistance of others and see it from their perspective. The reality is that when I need them to change their "normal" food habits to ensure my children will continue to thrive, I am actually threatening their very deep rooted emotional ties to their food memories and the memories for their children.
Please understand, their children's remembrance of eating a delicious cupcake with colorful sprinkles pales to the memory of them killing someone with that same cupcake. It is not an excuse to allow others to eat and place your baby in harms way. But, I hope it allows you a little more patience and perhaps a less threatening approach in trying to evoke change. Because, Mama, Daddy, you are going to want to evoke change. You will NEED to create change in order for you to keep your child safe.
Now please, go grab some tissues and let me hug you close for a moment while I tell you, it is okay to be scared. It is okay to be downright petrified. I would be more worried about you, and your child's safety, if you were not scared. It is okay to think about your childhood dreams and your perfectly planned parenting methodologies and feel sad. It is okay to think about all of the beloved family traditions that inevitably revolved around food and feel a loss. You have experienced a loss of what you always thought life would hold for you and your children. It is okay to cry. It is okay to mourn. And it is okay to be scared. It is even okay and normal to feel anger. All of these emotions are
normal. Every parent that has walked this journey before you and will walk this journey after you, will feel the same way.
Grieve. It is okay to feel grief. Watching your child go through anaphylaxis is traumatic. Knowing that it takes one moment of letting your guard down- your child ingests something, washes their hands in a seemingly benign soap that hides their allergens, or simply runs after a ball and runsthrough an ant pile- and your child is going into anaphylaxis IS traumatic! Fearing the very next time could be worse, is traumatic!
At risk of seeming cliche`, you will emerge from this dark rain cloud and eventually see a vibrant rainbow. Some days will be more bright than others. Some days it will still rain. But, I can assure you that you will feel pride over emerging to this new and brighter side of life. You will feel overwhelming pride over watching your little sapling grow into a mighty oak because, not in spite of the obstacles he has overcome. And you will learn what you used to dream about for your children has been replaced by new traditions and memories all of their own- that they too will dream of passing on to future generations because this will be their normal. You will realize that often times it is because of your children's food limitations that your little ones will eat healthier. You will feel pride at not only embracing this new lifestyle, but perhaps you will also feel inclined to help others that are new to this walk of life too. You will learn medical and legal jargon so that you can better advocate for your child's needs. You will be amazed at what you are capable of. You will be even more amazed and marvel at how amazing your children are. They will be strong and empathetic and so full of heart. They will be wise beyond their years and they will learn to appreciate the little moments.
It does get easier and yet, everyday is still a battlefield. You will always be in tuned to your child's emotional and physical needs more than most parents. You will find yourself being an investigator and knowing their every symptom. And, you will always hope and pray they outgrow this anaphylatic food allergy. You will become a wonderful advocate. You will be able to research everything about food allergies, accommodations, and allergen free recipes. You will be their biggest supporter and cheerleader. And you will realize that everything you once wanted for your children, you are able to give. Not only are you able to satisfy many of these dreams you had early on but, in hindsight, you will learn that what you give them now is far richer than anything you could have imagined. The bond between you and your children will be everything you prayed for, hoped for, and so much more than you could ever have expected- harder than expected, more emotionally draining and scary than imagined- but, amazing and paved with love.
Love,
Sheri
