When our precious four-year old ate a mini peanut butter cup on Thanksgiving Day, our entire world crashed, and it felt as if life’s doors were being closed. One little mini chocolate nut snack put our daughter into anaphylactic shock. Our daughter immediately threw up several times and then began to get ‘sleepy’. We knew something was wrong as she began to writhe in pain and then almost lost consciousness. We rushed to the hospital. As soon as we entered the Emergency Room the staff administered epinephrine, a breathing mask and proceeded to treat her with more steroids. Our daughter’s heart was beating at a slow rate and her breathing was faint. It took her body over eight hours to recover to a place where her breathing and her heart rate was at normal levels, but she did recover.
The next day we got the diagnosis: ‘Anaphylactic life-threatening food allergies to peanuts’. They gave us a packet of information on allergies and asthma then strongly encouraged us to find an allergist. We were sent home with an inhaler for her ‘asthma’ and a prescription for an EpiPen. We went to our pediatrician during the next few days and received recommendations for an allergist. Three allergists later, we finally found the one that was a good fit for our family.
I was now a Mom who had to carry an EpiPen at all times — it is always to be with me. Wherever my daughter was to be, her ‘epi’ needed to be there, too. We had lost the freedom to go anywhere without carrying that EpiPen. I am more than happy to carry life-saving medication for my child, but it remains a loss for me and for her.
I had several friends who walked this road before me, and I reached out to them for support and recommendations. It was a scary and crazy time — we were afraid of what to feed our four-year old. We had to clean out the refrigerator and the cabinets as most everything had to go. The toaster had to be thrown out because of the potential for cross-contamination. Our way of eating had to change. The products we bought had to be carefully scrutinized and ingredient labels read…and re-read…to make sure it was ‘safe’.
After our visit to the ER, the steroids put our daughter into a state of ‘roid-rage’ and for the next few days we had a child who was out of control — driven by the steroids pumping through her body. It was a strange and unknown time. I began to sense the doors of our old life close. Lots of doors began to close on us – time with family and friends, parties, life in the outside world — because it all felt contaminated by peanuts, a stupid little nut that could kill my child. Little did we know then in the early days of diagnosis that it was not just limited to peanuts…more was to come.
Are you in the early days of diagnosis of a life-threatening food allergy? Did you know this is Ambiguous Loss? This is what we found helpful:
FARE is a wonderful organization filled with lots of information to help families living with food allergies.
Find friends and others who are in a similar situation. There are local groups such as MOCHA (Mothers of Children Having Allergies) which is dedicated to educating and supporting food allergy families.
Your entire world is more than likely turned upside down. Release the tears. This is a real loss and it is painful. You deserve time to grieve the loss of your previous life of ‘safety’ and ‘ease’ — when life did not seem threatened by eating.