Guest Post: Love, Fear, and Cupcakes

LST is a middle and high school girlfriend of mine and author of this guest post.  She is a lawyer, a wife, and a mother to two adorable food allergic boys. This is the story of her difficult and brave journey into new motherhood.

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When I think about my experience of the first year of my older son’s life, I think a lot about gluten-free vegan baking.  I have always had some liberal and foodie tendencies, but vegan baking, prior to 2010, seemed a hippy-dippy, earthy-crunchy bridge too far. I was more of a fake-it-til-you-make-it, doctor up the box mix kind of girl.

Until, that is, there was the possibility that my adorable baby son might not have cake or cupcakes for his first birthday unless I made them my own self. Thus is the life of an allergy mom – specialty baking mixed with a serious dose of panic.

My oldest son was diagnosed at about eight months old with a rare allergic condition called eosinophilic esophagitis.  His life up until that point had been…well…frankly, terrifying to me.

My kiddo entered the world the rarest of the rarest of the rare. His birth involved me on a gurney with a nurse on top of me, people running, and lots of screaming, “OR, STAT!” and “We have to save your baby!” He had a prolapsed cord with a true knot in it. My friend the internet tells me that those complications happen in about .23% and about .05% of pregnancies, respectively. Either complication on its own can, and often does, kill a baby. How lucky we were to have had those nurses and doctors screaming and running. How lucky to have general anesthesia and surgery so quick they cut the side of the baby’s head on the way to get him out. How traumatic it all was! After he was born, he needed stitches while I was still out cold. Due to general anesthesia, I didn’t really meet him until he was about six hours old.

Our young son’s adventures with medicine didn’t stop after his birth. He vomited blood at 24 hours old, and again at 48 hours. He was admitted to the NICU for observation for several days, and they never really found the source of the problem. “It was probably related to his traumatic birth. He’ll probably be fine,” we were told. Then he had blood in his stool at six weeks old. No explanation. Then he was “fine.” Then he vomited blood again at about eight months old. In the meantime, he grew really well, and smiled and was very social…but he never really slept. We held him and rocked him and walked him and literally read prayers from the Book of Common Prayer over him in an effort to will him to sleep. He was a sweet, wonderful little person during the day, but he nursed all. the. time. His symptoms were so non-specific, that the only response we got from the pediatrician was, “Let him cry. It’s probably time for some sleep-training.” In the meantime, while I desperately wanted sleep, I was panicked that he was going to die and I felt that it was my responsibility to watch him every minute. I mean, in all of those months – 24 hours old, 48 hours old, 6 weeks old, eight months old – he had had blood coming from *somewhere* but no one could tell us where or, more importantly, why. I had crushing guilt that I didn’t know how to help this little person whom I had *created* and for whom I had total responsibility.

In the meantime, probably because he was immune suppressed from having to deal with the underlying allergies, he was frequently sick. He had recurrent ear infections. He had recurrent croup. I lived in fear. The Christmas season when he was six months old, I had such a hard time seeing the “beauty of the season” that I wanted to shout to that young woman on the donkey, “Mary!!! Look out! That miracle child of yours dies in 33 years! DIES!!! Guard your heart! DIES! Crucifixion! Look out!!!” Like a young mother, even thousands of years ago, could guard her heart against the future, protect against the pain of losing someone whose DNA was knit into her very brain. As though knowing the outcome lessened all the amazing days in between – and this was JESUS. I wanted to warn MARY that her baby JESUS was going to DIE. Terror wreaks havoc in the brain of the first-time mother. In my mind, I refer to the overwhelming panic I felt about my son from his birth until he was about ten months old as That Dark Time.

At eight months, after vomiting blood, he was admitted to the hospital and an upper GI endoscopy with biopsy was scheduled for the next morning. They would knock our boy out with general anesthesia and send a tiny camera down his esophagus and into the first part of his stomach, taking tissue samples as they went.

A week or so later we received the results of the test. He had eosinophilic esophagitis, also called allergic esophagitis. He was allergic to some of the food proteins that were passing through my breastmilk to him. His immune system was attacking the proteins as they went down his esophagus, and this was causing visible damage to his GI tract. No wonder he couldn’t sleep. An answer. An answer that caused the specialists to apologize to us – “This is rare.” “This is a long, slow road…but at least now you’re on the road.” – but an answer, nonetheless. We embarked on a long, complicated journey to find out which foods were causing a reaction. For a while, I avoided dairy, eggs, wheat, and soy. After he had more trouble at around ten and a half months of age, we weaned him from breastmilk to hypoallergenic formula. Through allergy testing we found out that corn, wheat (gluten), dairy (cow’s millk), eggs, sesame, beef, pork, poultry, fish, shellfish, peanuts, and treenuts were probably the things causing the trouble. Once weaned to the hypoallergenic formula alone, he slept. It was like a miracle. He was still happy during the day, and now he was peaceful at night. Thank you, sweet teeny tiny baby Jesus (he who died at 33 years of age).

As it turned out, not all of my fear that something terrible would befall my tiny son had been irrational. One of his pediatric specialists or his pediatrician (I don’t remember which) told us shortly after his diagnosis, “Well, this probably doesn’t lead to cancer.” Probably. Doesn’t. Lead. To. Cancer. My son was eight months old.

Even having a diagnosis, I still felt awful. If allergies were playing a role, that also meant that genetics were playing a role. My husband and his mother have seasonal allergies. My mother and father had seasonal allergies. That meant our son had gotten “allergic genes” from both sides of his family tree. I felt like I had brought this broken person into the world, and that it was my (and my husband’s) fault he wasn’t typical, because we chose to conceive him, and we gave him our (as I saw it at that point, clearly flawed) genes.

I said something to that effect to the pediatrician once through tears as we were talking about how allergies had a genetic component: “What did we do to this child?” The pediatrician pointed out that we had also given our son some “really good [genes], too.” It took me time to see the good ways in which his genes have affected our kiddo  – now that he is funny and clever, I can see (and claim) all the good genes.  Even adorable and happy pre-verbal children can be hard to fully embrace when they don’t really sleep and everything about them makes you think that the other shoe is about to drop.

Over time, we have learned how to cook differently, bake differently, and be differently about food. And we learned, and we learned, and we learn. And our son grew and grew and grows.  Today our son is a beautiful, kind, active, silly four-year-old. He loves dinosaurs, superheroes, running/jumping/swinging, drawing, and his little brother.  He’s also grown up knowing that some foods are safe for his body, and some aren’t. He knows to ask what the “‘gredients” are before trying a food. He knows that he has special treats in the freezer of his preschool, in case someone has a birthday circle. He knows that that isn’t always a bad thing – like when your preschool has a substitute teacher one day and she gives you all four (!) special treats at once (yes!), so while all the other kids get a muffin for a snack, you get a special brownie, and a cupcake, and some fruit snacks, and a cookie. He knows that he should always wear his special allergy bracelet to remind the adults around him to check before giving him food. He knows that one simply doesn’t leave home without the Medicine Bag – containing Benadryl, Epinephrine, and an asthma rescue inhaler.  He knows that he has to drink all of his “powder milk” (hypoallergenic formula) before he can choose to drink whatever he wants with dinner (like chocolate soymilk – yum!).

The kiddo avoids foods for which he has a positive allergy test, and that seems to have done the trick. He has to have new allergy tests every so often to see if his body is able to tolerate a food it once had trouble with. Then, he can try a new food. After a few weeks on the new food, he has a new endoscopy to check for hidden damage. So far, he’s been able to add successfully into his diet wheat (gluten), sesame, milk baked into baked goods, peanuts, pork, pecan, cashew, and almond. To add in the foods in that last sentence took about two years. That sentence was hard-earned, and involved pokes, prods, a couple of rounds of general anesthesia, some frayed nerves, and countless prayers. Right now he is trying chicken. Just this last week, for the first time, we went out into the world without bringing a lunchbox. He ate a grilled chicken sandwich from Panera Bread. I almost cried. Each act of trying a food that he’s previously been told to avoid is a profoundly brave act. I can see that he has learned from the superhero stories he loves.

From his parents, to get to this healthy point it has taken many internet searches (thank you, Al Gore or whomever, for inventing the internet so that I can find safe recipes to feed my child), many special-ordered ingredients (new allergy mom, repeat after me: “Authentic Foods Superfine Brown Rice Flour”), several new cookbooks (I love you, Cybele Pascal), the gift of a Kitchenaid stand mixer, and a few breakdowns (“Why, God?! Why! I just want to doctor the cake mix like Rachael Ray says is delish! Why?!?!”).  Each birthday our homemade allergy-friendly cupcakes tasted better than they had the birthday before as we perfected our recipes and technique.

I wish I could go back and tell that mama of That Dark Time not to feel so scared and guilty, that it would all be okay, and that I was missing this amazing little person who had cheated death (twice!) before ever entering the world.

I probably needed therapy. Or a drink. Or a therapeutic drink.

The thing that released me most from my fear, other than time and the gift of experience, was when I asked the pediatric gastroenterologist, “Do you expect this child to grow up typically, except for this condition?” He said, “Yes.” It changed my life.

I am eternally grateful for the people that came to me during That Dark Time and held him and loved us – telling me, “You’re doing great. He’s growing. You’ll get there. You’re a great mom. You love him so much.” The people who held our hands before his early endoscopies will forever have my heart. The people who prayed for him (and still do) are my heroes.

I have two sons now – our amazing four-year-old and his baby brother. We are still in mystery, sleepless night, pre-verbal territory with baby brother. I do not know what lies in his future. I know that I am lucky that I have not been so terrified with him and that allows me to enjoy him more. We are different people each time a child enters our lives, so we are also different parents.

For the record, I recently found a woman in our city who makes cakes for people with special diets. For a price, she makes us vegan, corn-free baked goods. I love her. I can e-mail her even faster than I can doctor up a box mix.  Eat your heart out, Rachael Ray.

Here are the boys, dressed as the Supperheroes, their team for the FARE walk for Food Allergy.

Here are the boys, dressed as the Supperheroes, their team for the FARE walk for Food Allergy.

4 thoughts on “Guest Post: Love, Fear, and Cupcakes

  1. Amazing. Simply amazing. I had to hold back tears reading about all the tests and sleepless nights. Thank you for sharing your story. The next we’re the same neck of the woods, we should share more stories over some therapeutic drinks. 🙂

  2. That made me cry! I hope everyone who has a child with special needs can read these words and be encouraged. God bless you!

  3. I have a very good ADULT friend with EE who is joining a team to like Mount Freaking Kilimanjaro next July to raise awareness for EE and fund research. I’m so sorry to hear you’re going through this but will share your story with her so she has some added umph going up that tall, tall mountain. Well done, mama!

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