Here I am, sitting in the middle of a crowded restaurant with my family, with tears streaming down my face. Our allergy child (who was four at the time) looks up at me with those big brown eyes and a look of concern written all over his face. He walks over to me, puts his little hand on the side of my face and says “What’s wrong Mommy? What is it?”
Rewind ten minutes earlier.
We’re all enjoying a nice meal in a restaurant. We just received our food and started to eat. Within two minutes our allergy child starts coughing. I look up at him to see what’s going on. Instantly I tense up and have flash backs of what his two previous severe reactions were like: swollen mouth, drooling, hives, coughing, difficulty breathing, EpiPen®, 911, ambulance, fire truck, police. I think to myself “please don’t have a reaction, please, I really don’t want to administer an EpiPen® here in front of all of these people (this should be the least of my concerns…but honestly, that is what popped into my head at the time). please be okay, please be okay, please be okay”.
He was fine. He just happened to be an ordinary kid that swallowed something the wrong way and was coughing. I was happy that he was fine. Unfortunately, that one little incident was enough to set off so many emotions in me that I just sat there and cried. I cried because he was okay. I cried because of the memories of previous reactions. I cried because I knew our lives really never would be the way they used to be. I cried because I knew that I would never stop worrying. I cried because at some point when he gets older it wouldn’t be my responsibility to keep him safe, it would be his. I cried because he will more than likely have to deal with this for the rest of his life.
I try very hard, every day, to stay positive. I focus on the foods that my son CAN eat. I look on the bright side of how healthy my family has become because of allergies. I have become a much better cook over the last four years then I ever thought I was capable of (and it’s rubbing off on my children! WOO HOO!). Allergies have taught my older son (without allergies) to be compassionate, responsible, and understanding. My family has a much better awareness of the foods we decide to put into our bodies thanks to label reading. These are all very positive things have happened to our family because of food allergies. So when I have one of those self pity days I force myself to remember just how lucky we truly are and to be grateful…even for food allergies.
-Elizabeth DiBurro
Easy Breezy Life
with food allergies and EoE
Anonymous says
Well put Beth. The release of that built up tension when you realized it was an ordinary event instead of an emergency releases a lot of hormones and adrenals. You are such a terrific mom. Sometimes being human just sucks and we're allowed - required - to have those break downs. They keep us sane:) Love ya girl!, Donna
Elizabeth DiBurro says
Thank you Donna. I don't know how all the men in your life are able to deal with emergencies every day for a living. I have a whole new apprecaition for fire fighters, policemen and EMT's. Love and miss you too!!!
jenny says
Great article! i know we have a lot to be happy about even though our kids do have food allergies, but damn, it's hard to deal with sometimes-one day i'm fine and the next i just am angry, sad for my son, depressed and miserable. NIce to read this from you because all your articles always seem so 'up' and positive i was beginning to think i was crazy for having down days.
Elizabeth DiBurro says
Hi Jenny, I'm glad you could relate to my story. I think that for a long time our family was on a roll. We got the hang of how allergy life works for us. We had no serious reactions and life was good. Then all of a sudden in the last couple of months we've hit some bumps. Those bumps hurt like hell, made us miserable and then we recovered. But if we never felt the effects of those bumps then we wouldn't have learned any lessons. Crap….here I am going all positive again, aren't I? lol Kidding aside, I'm glad I was brave enough to share one of my "down days" with you. It does make us feel less crazy in this crazy allergy world we live in. I have a feeling that it's not going to get better. There will be new issues next week…next year…next decade. I dont' even want to think about when he starts dating!!!! ugh…
Thank you for reading and commenting…
Abby says
I can totally relate to this feeling and thank you for sharing such an honest post! It's also reassuring to know we are not alone and there are other mom's who feel the same way we do. I cried when I took my super excited two year old trick or treating… he was beyond excited and we had been to five houses and all he had was either chocolate or peanut butter treats and it broke my heart that he couldn't have a single piece of the candy he had in his bucket. Such a small thing but it's times like that when I cry or get so overwhelmed by the fact that my son can't just live a "normal" life. Thank you for sharing and for your blog - very helpful for those of us who are just starting out on this brutal food allergy roller coaster.
Elizabeth DiBurro says
Hi Abby,
I remember the first trick-or-treat. It wasnt' a good feeling. Lucky for us our children probably won't remember it. This allergy life sure is a rollercoaster. I don't think we really know how many aspects of our lives it will affect until we go through it. It sure is helpful to know we all have someone to talk to and can relate.
Anonymous says
You are not alone!! I had the exact same meltdown last week, for all the reasons you listed perfectly! My daughter ate some rice cheese that contained milk protein (oxymoron). She was so close to an anaphylactic reaction. I went to grab an epi-pen and she threw up in the mean time, and then was fine. I cried my eyes out because I knew no one else would have known it was an allergic reaction. I had this awful feeling that I will never be able to have her out of my sight. This has become such a part of our lives that it is routine. I certainly have my days though, that I reflect about how I thought our lives would be and what they are. Your son is so lucky to have such a caring mother. When I am having hard days and wonder "why me", I take comfort that God gave me my daughter for a reason. He knows that I can take care of her.. I have the means, the patience, and the love to protect her the best I can. Hugs to you! Thank you so much for writing this!!
Angie K.
Elizabeth DiBurro says
Angie,
I couldn't have said it better myself. I often look at "bad apple" parents and wonder what would Ryan's life be like if he had those parents. Would he even still be here? Sometimes I even envy them, if only for a minute, for being able to just shut it off and care only about themselves. *sigh* But you are right, I will remind myself of the reasons you listed next time I'm feeling "why me". Thank you for sharing.
Christi says
Thank you for sharing and putting it so true. There are times I just want to say- my life is not easy, it's not fair, it's not cheap. I work a minimumish wage job 22 hours a week the hubby works 40 hours a week and we hardly make ends meet- people pressure me to put my kids in daycare- which would take all my salary and create a stress I can't even describe to people- how would that help- I so struggle relating to non allergy parents- I just want to slap them
Anonymous says
Beautiful post, even through the pain. I've got 2 with food allergies but the 20 month old has SO many (pretty much all the same as Ryan plus tomato, mustard, and all legumes). I'm still in a grieving stage, it seems, and haven't brought myself to the point where I make allergy friendly food for the whole family. I feel guilt about it. I feel fear EVERY single time I feed my son, even if he has had it before. I am tense whenever I am not by his side. He so badly wants and begs for what others eat and it crushes my weak little heart each and every time. It has gotten slightly better over the last year, as far as trying to release some of my anxiety over it, but I feel like I now live in fear. While I hate to see others hurting and wish that NO ONE had to have food allergies, it does give me some peace to know I am not the only one….especially the days where you feel hopeless and sorry for yourself. Thank you for sharing this.
Elizabeth DiBurro says
You're so welcome. It does get easier. But I think it goes through cycles. Just when you start to get comfortable with life with allergies, a new phase emerges. The great thing about the Internet is we are all able to connect and talk about it. We're here for each other. 🙂
Thanks for reading and sharing.
janelle says
You're not alone . . . I completely understand the anxiety, fear, panic, etc, etc. Had a situation on wed, Christopher came home from school and within 30 mins, he was covered with tiny red bumps - head to toe. He was eating pineapple (which he eats all the time) but I think he had touched something at school and didn't wash his before eating. Right away, I go into work mode and wash him down, gave benadryl and watch him like a hawk. Later that evening we were practicing at church and he was having a fit, was crying and rubbing his eyes . . . within minutes, he's eyes start getting small bumps. Luckily, we have a nurse at church and I had him take a look . . . so again, I had to give him benadryl (only 4 hrs later than before). My whole body tenses up and I can't think straight. I always feel like I have to explain myself for being so overbearing with him. I didn't want to send Christopher to Sunday School cause I wanted to keep an eye on him. For that he was not happy about and my heart sank cause he just wants to play with the other kids.
Thanks for sharing you heart, it makes the rest of us feel like we're not alone 😉
Elizabeth DiBurro says
Hi Janelle,
We had a day like that yesterday too. Some days I have no idea what causes the hives. It can be so frustrating. Ryan will get hives soooo easily, if kissed, if the scruff on my husbands face touches his face, he breaks out. It can be nerve wracking to say the least. 🙁 I'm hoping today we all have good days where we can relax and just enjoy our families.
Thanks for sharing. 🙂
Erin says
As others who have commented have written, you are NOT alone. I've been in exactly that situation. Or … with each stomach virus, stomach ache, vomiting incident, watching and waiting for another symptom, wondering if it's "just" a virus or if it's the onset of an anaphylactic reaction. It's intense and scary and we stay strong … until we feel relief. That's when I cry, too. Thank you for your blog. Food allergies can be so isolating - for our kids, and for us, too.
Elizabeth DiBurro says
Hi Erin,
Ugh I hate colds! I know exactly what you mean. I would love to put my family in a bubble and protect them from germs and allergens. Maybe then I could finally relax. I understand the isolation too. Connecting with others through the Internet helps so much. Thank you for sharing and being there for me. 🙂
Jennifer says
I have to say that you were so brave venturing out to the restaurant. My son has food allergies, not anaphalactic, and I just can't face going out to eat with him. I can imagine that you must have been on pins and needles anyway and then any sort of reaction would definitely make you jump quickly allergy mode. Anyway, I'm so happy to hear it was a false alarm and wanted to let you know that I could totally sympathize.
Jennifer
Elizabeth DiBurro says
Hi Jennifer,
As a rule, we do not let Ryan order food at restaurants. I am just unable to enjoy myself constantly thinking of cross contamination. It's just not worth it. However, there was one restaurant that (when we used to go out) made a huge effort to accomodate his allergies. We knew the owner and felt comfortable there. However, we no longer do that either. All it takes is one mistake. We've done the epipen twice and I know that I never want to do it again. Of course I will if he needs it… but I dont ever want to be in that position again. If that means no restaurant food, then that's what it means. It's an easy decision when it comes to my son's health.
ReplyDelete
shirlena-rae says
I recently found your blog from Pinterest, since discovering my youngest daughter's wheat and possible corn allergy. (Diet change, complete turnaround, testing next week) This post and its responses are especially encouraging however because of my oldest daughter's nut allergy. I broke down in tears the other day just reading about a school where a friend works, where everyone labels everything for food allergies for their school functions such as harvest festivals and such! I just could not imagine an entire school where everyone is so diligent and aware, and my daughter could actually eat things! I had no idea the amount of daily stress I was under just trying to get the other kindergarten parents to stop sending nut products to school for classroom snacks!!
I was also quite surprised to discover how much I have been grieving the loss of wheat, especially for the child who had previously outgrown her milk and soy allergies. So thank you very, VERY much for posting this. It's so good to read other accounts of Moms who deal with this lesser common but very wicked stress. We've seen the scary reactions, and we have to grieve and get it out and we have to share. I am so encouraged by your blog, and look forward to trying recipes.
Sincerely,
Charli
Elizabeth DiBurro says
Hi Charli,
I'm so glad you found my blog and that you find it encouraging. Thank you!
My little guy isn't in "real" school yet so we haven't had to deal with much in regards to other parents. I am not looking forward to it. As a matter of fact, I've been researching a lot about homeschooling and I think that it may be what I'm looking for. Hopefully I can keep my sanity while doing it! 😉
Thank you for sharing some of your story. I can tell you how helpful it is for other allergy parents to read other peoples experiences and know they're not alone.
-Elizabeth 🙂