Thomas C Murray

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"I Just Want to be Normal, Daddy."

Finding strength in the midst of heartache

Today was one of the those days. The kind of day that’s difficult to forget and one that rips your heart out as a parent. What started out as any Monday would, ended with me appreciating life and the love of my little ones that much more.

My little girl was born with severe food allergies - tree nuts and sesame seeds to be exact. Not a meal goes by where we don’t think about the food that’s prepared, where it comes from, if it could be cross-contaminated, and any risks that could be involved. It’s become a way of life and it’s something that even our extended family has become accustomed to.

When Paisley was ten months old, she accidentally ingested hummus, a food typically made with tahini - a sesame seed paste. A few minutes later, her entire body was swollen as she became almost unrecognizable, and we found ourselves rushing to the emergency room, praying to God that our little baby girl was going to be okay. After a sprint through the emergency room and an EpiPen injection from a nurse, her tiny body began to stabilize. I had never been so scared in my life. It was that day that we realized our daughter had some special needs and that certain foods would cause anaphylaxis. We were reminded how precious life is and how those we love could be gone in an instant.

Although over four years have passed, I can still remember that night like it was yesterday, spending all night on the floor next to her crib, listening for each breath. I didn’t sleep a wink that night and can remember just wanting to hold her close and not let go. I realized then, how difficult and heart-wrenching being a parent would at times be. I didn’t want my little girl to have any sort of life struggles like this, and I will always wish there was a way I could take it from her. It's hard knowing that I can't fix it and that taking on this struggle for her isn't possible.

Earlier today, while having lunch away from home, Paisley took a bite of a cracker that contained sesame. For most people, it's something that they hardly notice, but for people like Paisley, this tiny seed can cause them to stop breathing. Fortunately, my five-year-old little angel instantly realized that her throat felt itchy and she did as she has been told to do. With quick reaction time by those with her and minimal ingestion, things ended up okay - with no hospital visits or traumatic situations. The crisis had been avoided. As a parent, moments like this stop your heart and make you hold on that much tighter for the rest of the day; appreciating life’s smallest moments. After hearing a story where the outcome was fatal on the news only a few days prior, I am continuously reminded how each day is a gift and how precious life really is.

After some benadryl, countless hugs, and non-stop snuggles, we began to talk through what happened. I told her how proud of her I was and how she did exactly as she was supposed to do; yet I could still see the sadness in her eyes. A little while later, and while holding my hand, five year old Paisley looked up at me and said, “I just want to be normal, Daddy.”  My heart ached, and like any parent would, my eyes teared up as I held on to my little girl. A little while later, she went on to say how she “wished I didn’t have to worry about her," showing that her maturity and heart are far beyond her years. As a parent, these words were heart wrenching and hard to hear, yet we remain in awe of her - how at five years old, she continues to be able to handle a few tough cards that she’s been dealt with maturity and strength. Simply put, I admire the courage of her little heart.

In trying to make today a teachable moment, our heart to heart conversation led to one about appreciating all that we do have and finding ways to help those that have struggles that are far more difficult than hers. As well as a five-year-old could, we talked about how everyone has some sort of struggle in life, hers being with what she eats, and how it's important to appreciate all that is right in life; understanding that many people have far more challenges than we do. I went on to tell her how her ‘really smart brain’ and gorgeous smile, were far from ‘normal’ and how she is loved exactly the way she is. Her precious smile helped my heart start beating again. As hard as these conversations with someone so young and innocent may be, she’s beginning to understand.

This coming fall, my little girl will start kindergarten. She will step on a school bus for the very first time; and we’ll be forced to entrust the well-being and safety, food allergies and all, of my little girl to the bus driver, kindergarten teacher, cafeteria staff, nurse, and every adult that supports her, in her new elementary school. It’s easy for the fears of “what if?” to take over my mind, but I’ll put my trust in God and those that will care for her when she’s outside her family's safety net. I’ll admit, as dad, letting go even just a little bit, is hard.

As important as what she learns next year will be, what I’ll care about most is her safety, the friends she has, whether or not she’s enjoying her day, if she loves going to school, and her happiness - all things that are not measured by tests or that can be found written in the standards. As a former elementary principal, I can remember parent after parent caring most about the happiness of their child; with academics further down their priority list. I understand that now. I really do.

As educators, we need to remember that every child in our classrooms and in our schools is someone else’s whole world. Every time we call home, every note we send, every comment we make, is about someone else’s little boy or little girl. Someone’s everything...and for me, someone else’s Paisley.

Thank you, Paisley, for even at five, you help me understand and focus on what matters most.

Feeling blessed tonight,
Paisley's Daddy