Tag: kindness

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.

Special Announcement

Every night at dinner, we talk about two things: our favorite part of the day and our greatest challenge of the day.  Sometimes we laugh together, sometimes we problem solve, and sometimes we talk about a better way that we could have handled the situation.  This is a part of every night that I treasure.

At the dinner table last night, Kelsey shared that she had a “special announcement” to make.  

“Family,” she formally addressed us first, “there is something that has been on my mind lately.  I wanted to tell you about it.”

“Here we go,” I think.

“I have learned that the world can be beautiful and full of happiness or it can be mean and cold.”  Her father and I looked at each other without really knowing how to respond.

“How at five years old has this been on her mind lately?” you may wonder at first.  Then you think back over the past few months that she has endured: a hospital stay, four emergency room visits, weeks missed of dancing school, days missed of Kindergarten, an emergency visit to the NIH, steroids, a more potent medicine, a daily injection to better manage her pain, and the giant red patches that itch her and hide under her sleeves and her pants as a reminder of that daily torture.  You think about the wonderful moments of the past month alone, including: singing Christmas carols, Santa Claus coming to town, a holiday show, family time, snuggling with her puppy, baking cookies, making ornaments, and watching holiday movies.

Thinking through all of the sorrow and triumphs, all of life’s challenges and favorite parts that we relive every night, I inquire, “What makes you say that Kels?”

“It’s just something I’ve been thinking about lately.  Most importantly, I really wanted to say, thank you for making the world beautiful for me Mom and Dad.”

Profound.  Insightful.  Beautiful.  

Painful and joyous simultaneously.  Her announcement gave me all of the perspective I needed to end the day (and 2016 for that matter) with a smile.

Here’s to hoping that 2017 is filled with far more beauty and much less pain for my beautiful daughter.

To many more favorites than challenges for you and yours in the year ahead, and to many more special announcements…

Together, we can…

Ralph Waldo Emerson once said, “cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously…” This week, I have given thanks continuously.  I am still in shock of the overwhelming elegance, promise, and love felt at Valleybrook Country Club on Friday night, November 25.

Maybe it was because the event followed Thanksgiving?  After all, Thanksgiving is a time to reflect on the year that has passed and all the blessings in your life.  During Thanksgiving dinner, Kelsey said that she was grateful for one thing.  She said, “I am grateful for tomorrow night.”  Grateful seems an understatement.  My family fought back tears at her sentiment because we realized that she is already aware of kindness and gratitude at five years old.

I encourage both of my children to stay positive, give thanks, and count every blessing.  It seems that they are noticing and applying the cultivation of gratitude in their day to day lives.  For that, I am grateful.  

I think back to Friday evening with wonder.  I stood before the guests in absolute awe of the compassion and warmth that everyone had for Kelsey, our organization, and our cause.  We are still overwhelmed by the support and generosity shared at Valleybrook Country Club.  The collective efforts of the night helped us raise $11,000.  

The support we received on Friday evening both fueled our mission and strengthened our purpose.  We are committed to raising awareness and finding a cure.  This week, we are one step closer to those goals.  We are grateful beyond measure.

In closing, Helen Keller states that “alone, we can do so little.  Together, we can do so much.”  Kelsey’s Kaleidoscope, Inc: A New View for PAN is just getting started.  We are on a mission to raise awareness and find a cure for Polyarteritis Nodosa and all affected patients.  Our affected patient is grateful for you and so are we.  Together, we will do so much.  

15241199_1145208078895606_3399869107634811905_n 15241430_10211909604562474_894589293199788637_n 15250907_10211203072102217_2952727769104601664_o-1 15252545_10211202947699107_5054202393553561775_o