Month: January 2017

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.

Fatigue

The chill of January’s air captures the spirit of melancholy and angst I often feel during this dreary month.  It should be a month of renewal and a kick start to new and better things.  Though I try my very best to hold on to those signs of renewal and the feelings of bright beginnings, I am also deeply conflicted.

I think back to the woes that January has brought over the years and the new struggles of January present.  

Kelsey’s favorite doctor recently asked me how I was doing.  She really meant it, and her soft gaze opened the doors of honesty.  She really cared and we had a moment that was authentic and real.  

I am always prepared and ready for the Kelsey questions.  I answer them thoughtfully and carefully.  It was much harder to talk about me.  The truth is that every new pinch and pain from my daughter tears a little piece of happiness away from my day.   I know that we will get through this and this, too, shall pass.  I know that deep down, but this particular struggle began in July.  Every time I convince myself that we are on the upswing, we have a little detour and we start all over again.  It is exhausting.

It is taking a toll on the entire family.  Some sleep.  Some rage.  Some cry.  Some write.  We all emphasize the bright side, but perhaps we need to talk about some of the troublesome areas more, too.

A recent chat with NIH doctors confirmed that the daily injection would continue for a little while longer.  Very little is certain with this disease and doctors are figuring it out as we go.  The longer we go without those answers makes it harder to endure.  Hope springs eternal, and I hold on to it.

I believe that the cohort at the NIH will grow and that each new patient will help bring answers.  

This is a marathon, not a sprint.  I try to find solace in that.

The problem is, sprinting was one of my strengths as an athlete.  There is no personal trainer for this marathon and no rule book to follow.  Endurance is a gradual build up of mental strength and physical toughness.  It takes commitment and it takes a determined will.  

I picture how much I dreaded double sessions of soccer conditioning because I really despised that part of the training.  Running and running and running.

I just wanted to run quickly.  It seems I still want to run quickly, but I just don’t know where to go.

My lack of training is showing and frankly, I am fatigued.

Fathers

Tonight, I sit here reflecting on love and the bond I witness every day in my home.  It is a love I have been fortunate to feel my entire life and one I observe with a smile.  It is the unique love a father has with his baby girl.

The bond of a father and a daughter is unique and unparalleled in many ways.  It changes year to year (and sometimes day to day).    At first, it is pure strength and a source of complete comfort.  At times, it can be a full of discipline.  At others, it may simply be a shoulder to cry on.  The truth remains, it is whatever it needs to be because a father is always there for his girl.

I fondly recall the moment I first watched Brendan hold Kelsey.  It was careful and cautious.  It was different than the way he held our son and the way he gazed down upon her sweet face told me everything that I needed to know.  We were in trouble.  It was new love at first sight.

As the daughter of a strong, dedicated, selfless, and loving man, I grew up knowing that he was always there for me.  I live that same type of love with him year to year.  My husband serves as that same pillar of strength for our daughter that my dad has always been for me.  It is a vastly different love than I can provide, and it grows stronger by the day.

Over the past few days, Kelsey was unable to have her dad beside her during the morning injection.  His necessary role is to scream “cheeseburger” at the top of his lungs and provide a hand to squeeze thereafter.  It has been a void, and we have all felt it.  Absence has made me realize how deep the father-daughter bond is and how it is vital in our lives.  A video recording of the scream and the hand of her brother to hold have just not been the same.  No one can truly substitute for your father.

And to that point, who have I called on for help, support, and a driver when my husband was away?  My father.  Who will always answer the phone and “be right there” for me or for my children?  My father.  It is a vastly different love than my mother provides, and it grows stronger by the day.

Fathers, the world needs your dedication and your daughters need your love.

Thanks for being the men you are exactly when we need you to be: today, tomorrow, and always.

If not, I’ll just go tell a teacher

“I’m so worried about something, and I need your advice,” I hear Kelsey say to her big brother before bedtime.  I wait at the door to listen for a few minutes.  I always love to hear their conversations and the bonds they are forming as siblings every day.

“Sure, you can tell me anything, Kels.” he replies.

“Well, I’m worried about going back to school.  I have these giant red marks all over my arms and legs.  They just keep itching me.  What if all the kids laugh at me and think I’m a monkey?  I am so worried they will say I am a monkey.”

Now, of course, I start sobbing and really cannot go in now.  I am hoping that big bro has something poignant and reassuring to say to Kelsey.

“Kels, two things.  First, I am there at school with you.  If anyone says a word or dares to laugh at you, they will answer to me.  I will say, stop giggling.  How would you like to get a needle every single day?  I think that my sister is braver than you can ever hope to be.  And if they still laugh, I’ll just go tell a teacher,” he spoke as the sage I can always count on him to be.

So 2017, here we are.  I hope you will be kind and generous to Kelsey.  I know that her family is here to support her, our search for a researcher continues around the globe, and I pray that no one dares to notice the marks or the itching.

It is one thing to actually give a daily injection that is working wonders, making it a little bit more bearable to deal with the pain.  It is quite another to have her think about not only the medication and the anguish of that injection every evening and morning, but also to worry about the perception of other kids.

At least you can always go and tell a teacher.  There is certainly comfort knowing that.

2017, please be kind.