birthday – Kelsey's Kaleidoscope

7 Years

Seven years ago, a beautiful girl was born named Kelsey. She came into the world with grace and her umbilical cord wrapped around her neck. “We will consider it her first necklace,” laughed the doctor as her Apgar test showed health on all levels.

The course of her first 3.5 years is almost indescribable when we look back. We had constant signs and indicators of worry and trouble. We had surgeries, hospital visits, biopsies, rashes, and red marks. We had so much hope that “this would just go away,” though we knew in our hearts that 3.5 years of worry were not going to simply do so.

Almost 3.5 years to the day, on a June evening at 5:22PM, our world changed forever. Our 3.5 year old was diagnosed with Polyarteritis Nodosa and everything we knew has been more difficult since we left the hospital that night.

Understanding what a rare disease does to a person and her family is something you cannot understand without enduring it firsthand. It gives you perspective, it creates constant doubt, but it also helps you feel tremendous hope for what you learn and discover (depending on the day).

The second half of Kelsey’s 3.5 years have been equally trying. “At least we know what it is,” we sometimes say, because we now know what we are worrying about. Sometimes, that only makes it worse.

When Kelsey blows out her seven candles, we will be filled with hope and wonder. She is a child that lights up the world with grace, beauty, wisdom, and energy. Her love of life cannot and should not be contained. Keeping her body strong, filling her brain with more wisdom, modelling character virtues, and choosing love in the face of the rare illness we first learned about 3.5 years ago is the journey we travel every day.

Seven years and so much of a story to tell.

Happy birthday to a girl that has taught us so much and continues to sparkle and shine in so many ways.

Another Year

Today marks another year for me.

Each celebratory day means a great deal to me in terms of presence and not presents. I am trying to truly make the best of every day and cherish all that I have surrounding me that is joyful.

The past year has marked the start of Kelsey’s Kaleidoscope, Inc., advances in research around the globe on PAN and the gene deficiency causing the manifestation for Kelsey, dada2. In addition, over the past year, we have had the chance to connect with other families and other children who suffer as Kelsey does.

As a family, we have endured daily injections, four hospitalizations, not to mention the typical day-to-day challenges: the boy who was mean on the bus, writing the number 5 properly, mastering 30 subtraction problems in 90 seconds, and learning to tie shoes.

As a mother, I witnessed the magic of a child who connects print to meaning and the endless possibilities that open as a result. My son learned how to play the violin and I must admit, hearing him play Twinkle Twinkle Little Star brought me to tears. I met a mother who lost her son in a tragedy and watched her strength. She taught me about her Choosing Love movement that was born as a result of her suffering.

I have laughed with my kids, yelled at my kids, and snuggled with my kids. Every morning hug and afternoon homework struggle has been worth it because it has been uniquely mine.

As a wife, I have learned to be more open and appreciative. Though I cannot change circumstances, I can change how I talk about my feelings regarding them with those I love. In truth, I learn something more to love about my husband every day and I am grateful that he gives me strength, confidence, and the support to follow my personal and professional goals.

This year, I hope for peace, love, and happiness for all of the people who I know and love.

Six and Full of Sunshine – Happy Birthday

Six years ago, I awoke full of joy and excitement over the soon-to-be arrival of my baby girl. 2011 was the best January of my life. Hope sprung eternal, snow piled high, and a true gift to our family was born.

Kelsey’s sweet face was alert and full of wonder. Her tiny hands clutched our fingers. Her brother stared at her with curiosity and awe (maybe a tinge of jealousy, too).

We brought Kelsey home to a nursery of brown and pink flowers, infused with butterflies and symbols of love. Her name was rhythmic and powerful. She was strong from the start. It seemed that she was everything I had hoped for in a baby girl.

Some how, some way, Brendan and I were unlucky enough to pass along a condition that depletes us at times. We cannot help but remove our rose-colored glasses and face the facts. The truth is, Kelsey makes it easy to wear those glasses most days. If you look at the world through her eyes, it is a place filled with wonder, beauty, and kindness.

Every morning, there is a true glimmer of hope that wakes up seemingly full of more sunshine and happiness than when I kissed her goodnight. Her name is Kelsey and though her six-year journey has been arduous, grueling, and a daily struggle, she makes it easy to forget the health woes and worries. One ecstatic smile can easily replace the worry. You just feel better being near her.

When you speak to Kelsey, you can lose sight of how young she is because of the depth of her understanding. The complexity of her vocabulary astounds you, and you remind yourself that her life experiences have given her a perspective that most others simply do not have. She is always looking on the bright side. Sometimes I actually find myself lost in a smile and she will ask me why I am feeling so happy. My answer is simple, “It is because somehow, you are mine.”

Every day I am so grateful that she is mine. Heartache and insurmountable worry aside, she is the “sunshine in my pocket.”

She involves other children in play, never wants to leave a friend out, and always thinks of others. Sometimes, our dinner conversations are more about how she can help a classmate (with something the person likely does not wish to be helped with…) more than they are about herself. She is just remarkable. Even her choice for plate color and peanut-free treats for school were all about the other kids. She wanted yellow and pink so the boys and the girls would be happy. Then, she picked out DEEP BLUE plates. The girl who loves pink and purple chose dark blue. I had to ask for a rationale. “Mom, the boys will not want to eat off of a pink plate.” That is Kelsey. I bought pink plates anyway.

I bought you those plates because today is your day baby girl. Bring in those PINK plates and have your PINK cookie with a huge smile. Soak in the songs and smile as only you can.

Today, my wish for you is a year that does not try to break your spirit like the last few months of five did. You did not let it, and I will make it my goal to let your positive spirit guide mine today. There is nothing sweeter than watching you smile. You are jumping for joy today.

Happy sixth birthday! You are my girl, my sunshine, and my strength. Stay strong, compassionate, and positive. May your every wish come true.