35 weeks and counting, 8 weeks of bed rest – We’re in the home stretch! Despite my mobility being more and more limited as each week passes,today was Easter. A holiday that had little significance to me as a child is now a special tradition I look forward to each year with my children thanks to my Aunt. My kids love my Aunt and all the specialness that is her. The kids were giddy for Easter at her house and knew they were always in for a treat.
As you all know, Marcus’ allergies are quite severe. Up until recently he has been relatively un-phased by the limitations of his allergies whether it’s because we’ve shielded it from him or made up for it in other ways. To some extent, at the tender ago of 3, he himself understands the severity of his allergies and knows to alert others that he cannot have milk, no cheese, no nuts. “It’s bad for me… Go to the hospital… no shots.”
It’s hardly been an issue we’ve had to address and naively we’ve been proud parents of his advanced maturity over his condition. We never really considered how sensitive he could be about his situation. Yes there were occasional tantrums over being left behind, although we were often able to stave it off with a “There’s butter or cheese there, you don’t want to go to the hospital do you?” or even worse, hand him the iPad and sneak off when he was entranced by it. We convinced ourselves that he didn’t notice he was the boy in the bubble because we all coddled him and spoiled him with love and attention. At home, avoidance of his allergy triggers were the norm and way of life. He has rarely left the house since restaurants became off limits and most all of his trips outside of the home were short stints and safe trips by any definition.
To maintain some sort of normalcy, I refused to give up family traditions and we allow Marcus, with pre-emptive medication on board, the rare treat of family gatherings. My Aunt’s annual Easter dinner which we look forward to every year was where it finally hit me hard that my 3 year old was affected by his limitations and it broke my heart. This year’s Easter dinner was completely different than the last. Having seen the inside of the hospital over a dozen times this past year, I was on high alert and was grateful to my aunt for being equally as vigilant about his allergies. For each course of the meal, Marcus received an entirely different “safe” dish, which out of the kindness of my Aunt and her good intentions usually meant plain, no seasoning, simply baked or fried in olive oil. He would take a bite or two and get distracted by the TV and I just put my mind at ease that this dinner was early by his standards (3pm) and that I’d make him his own dinner at home at his regularly scheduled time.
As dinner drew to a close, one of the traditions the kids love at the end of dinner is the breaking of the Italian Easter Egg, a chocolate shell egg with a prize inside. While I still don’t understand the significance of this, I love all the excitement of this tradition, and the kids loved to indulge in it. For the first time, since his allergies have increased in severity, I immediately said he couldn’t participate, as the other children hurried to the table. Eager to capture this moment, I was snapping away on my iPhone oblivious to my 3 year old who had retreated behind a couch. One of the relatives noticed him and called to me that Marcus seemed upset. I called for him and with his back to me didn’t budge. I waddled over to find my little guy hiding behind the couch trying to hold back tears, and when I pulled him into my arms, I whispered chocolate is bad for the baby. Mommy doesn’t want the baby to get sick and go to the hospital. He whispered back “I know.” and the tears started flowing down his cheeks. I rocked him in my arms and tried to hold back my tears as well. He knew, but it was still unfair to watch everyone have fun without him.
Reflecting on the events of today, I told my husband we needed to find a way to still protect our son but provide him with some normalcy instead of shielding him and placing him in a bubble. We needed to find a happy medium, not just for him, but for his sister as well. Ava definitely has voiced some discontent with the accommodations she’s had to make for her little brother or the special treatment she feels he gets because of his allergies. Finding that balance is going to be hard though. When he’s in the bubble, we feel safe, but taking him out leaves us feeling vulnerable and scared for the life of our child. Every time he has a reaction, I feel like we’ve taken ten steps back or added another layer to that bubble.
At the age of 3, he’s finally interacting with other children having enrolled him in a 40 minute, 2 times a week Taekwondo class that doesn’t serve any food and only allows water in the venue. We’re still debating sending him to nursery school as our fears over a reaction still paralyze us to the point where we’re rarely apart from him and trust very few people with his care. Letting him go to nursery school would be a HUGE step in trust. After today’s revelations though, we need to really consider if it’s our own fears that are crippling him more than his allergies are.