On this FPIES journey with our littlest Osling, the clouds can be overbearing and the silver linings scarce. Through the anxiety, analyzing, waiting, watching, documenting, traveling, prepping and planning so much is missed in day to day enjoyment.
We worry about L’s health but we also worry about our girls. Are they getting enough of us? Are they sacrificing too much because of his medical limitations? Are we missing out on moments with them, despite our best efforts, because of the all-consuming beast that is FPIES?
When we take a minute to slow down, to watch the sibling relationship that has developed since L was born, we realize how much empathy, compassion, awareness and understanding K and A have gained on this journey.
While we seek to raise awareness outside of our family, we are confronted with the harsh reality of ignorance from many. Ignorance of food allergies in general, lack of concern with learning and quite honestly, hostility surrounding changing their actions to keep others safe. While we see so much darkness in the world while dealing with our son’s condition, we are surrounded by so much light from our girls.
Who knew that at just 4 years old, A could successfully list all 13 trigger foods and all 14 safe foods L has, as well as what is on our list to trial next. Who knew that at 9 years old, K would know about cross-contamination, hidden ingredients and the danger of non-food items for L. With each diaper A asks, “is that a sick poop mom or a happy poop? Do you need your phone to take a picture for the doctor?”.
Although I wish that they didn’t have to worry about their brother’s health, I am so proud of their awareness and devotion to keeping him safe. I hope and pray that this commitment to their brother expands to others they meet throughout their lives.
That they learn about all sorts of differences, abilities, challenges, and strengths and seek to help others around them rise.
That they realize that equality and equity are different. Equity doesn’t mean that everyone gets the exact same thing, but instead that each person receives the assistance they need to create an even playing field.
That they internalize that different abilities does not mean less capabilities.
That they find ways to help others the way they help their brother.
That they are willing to make sacrifices to their convenience, for the safety and well being of others.
It’s true that FPIES has taken a lot from our family, but I choose to see all of the blessings it has opened our eyes to, all of the lessons we have learned. Those small changes our family has had to make in an effort to adapt to this new and confusing life, have set the stage for life lessons for our children. For that I am grateful.
Not being able to eat in the living room seems like a small inconvenience but it teaches them not to eat in situations where others suffer from allergies or to make substitutions in the food they chose. They are learning to make sacrifices now to help others. To empathize with those who already feel left out and have challenges to deal with themselves.
Celebrating new passed foods seems like small wins now, but that will translate to seeing each individual’s accomplishments and celebrating just as loudly for others as they do for themselves.
Keeping a watchful eye for crumbs that pose threats to their little L, will transform into looking out for others in their lives and an innate willingness to jump into action when needed.
Understanding that some foods are strictly for L and are not to be shared because his diet is so limited and frankly expensive, will eventually manifest as an understanding that giving help and necessary accommodations to those who need it is not favoritism. Instead, they recognize that having those foods for him is just as necessary as the cabinets filled with food for them. Keeping things “fair” means he gets specialized food and they celebrate that with us.
Recognizing that attention spent on their brother is not attention lost from them. As they grow this will reconfigure into seeing that their strength and ability is not lessened by helping others. Small sacrifices are in fact part of being strong and independent.
Making sacrifices when L is fighting through a reaction and having to adjust all previous plans, will become an understanding of invisible illnesses and disabilities. Understanding that sometimes, we have to adjust to support and be there for those who need us most.
I pray that these lessons follow them. That small seeds have been planted and will flourish over the years. I pray that we can continue to support our little L and become stronger as a family unit while recognizing every fleck of silver lining this journey has brought us. I pray that our daughters look back on this journey with appreciation for the early life lessons they have learned while recognizing that we always tried our hardest to give each of them what they needed. But most of all, I pray that this sibling bond, forged through years of bickering, and laughter, never falters and that they learn to help and rely on one another for the rest of their lives.
To learn more about FPIES and follow our little warrior’s story, check out his Facebook page Living La Vida Lucca: https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/?tn-str=k*F
Follow the Osling Chronicles on Instagram @osling_chronicles for all of our little Oslings’ latest adventures
