Balance

It can be difficult to slow down during the hustle and bustle of the holiday season.  However, I find that is what we need right now more than ever.

We try to mix in holiday fun, quiet reflection, and a sense of gratitude for all that we do have in our lives every chance we have to do so.

At times the balancing act of work, play, and family can be a challenge for us all.

I think back to this week six years ago when I held a febrile child void of energy in my arms.  She was nine months old and she was in need of serious medical attention.  Docs convinved me it was teething.  I was easily persuaded because I wanted to be.  I wanted balance and I wanted to believe.

Standing in the doctor’s office demanding more, demanding testing, demanding results was not easy.   It took bravery and perserverance.

The sixteen days we endured in the hospital following that moment were even harder.

Finding courage, finding strength,  and finding balance in all things has taken effort then and now.

Kelsey’s disease helps us evaluate priorities, give thanks for blessings, and pray for balance in all facets of life.  We pray for answers and we pray that we connect families and help others so that balance can be found.

I hope this holiday season helps you find comfort, balance, and love.

Speak Out. Advocate. Care.

Tonight, I consider our journey one year ago and where my family sat one year ago, five years ago, seven years ago.  I think of the connections made in Bethesda last year at The Inaugural International Conference of the Deficiency of ADA2, discovering other families who face the same journey.

I remember each of you.  I remember your stories.  I hope that you continue to speak out to raise awareness and help in our fight against orphan diseases, dada2, and PAN.  Here are two stories that were shared during that time.


Please join us on November 24, 2017 for our 2nd annual Gala.  Tickets can be purchased here.

Love…

All you need is love

A classic tune that reminds me of a dear friend.

This week, cancer took that dear friend’s life.  It is bittersweet to hear that song and remember her pretty face.  The world needs love and so much of it.  My friend’s legacy will live on and serve as a constant reminder to me of enduring and everlasting love for her daughter.

When I came home from her services, I could not help but play the Beatles song in my mind as I kissed Kelsey goodnight.  She was so adorable in her PJs and her Princess eye mask.  I sat with her for a few extra minutes and softly sang her the song as she slept.

I thought of my friend’s daughter and hoped that she was feeling the love, too.

Love is all we need.


If you’d like to share the love for PAN and DADA2, please join us on November 24 for our 2nd annual Gala.  Tickets can be purchased here.

Righteous Anger

Every week, I read about about the journey of Kelsey and her family.  This week it is my turn.

I am Kelsey’s grandmother, and Saturday night I went to see a movie, American Assassin—a spy thriller at its core but also a story about the limits to which one is pushed as a result of anger over a loved one. 

After approximately 15 minutes into the movie I started to cry hysterically.  I connected to the movie’s main character in a way that caught me off guard.  It finally hit me that, just like the character in the movie, my actions for Kelsey’s Kaleidoscope have been motivated by a combination of love and anger: righteous anger.  The difference though, is that my feelings are not fiction.  They are reality.

When Kelsey was diagnosed with PAN, I felt a sense of helplessness that I had never experienced.  As a mother and grandmother, I usually know what to do to fix things for my family and make them right.  This time, I was unsure as to if or how I could possibly help or improve Kelsey’s situation.  But there was one thing I knew for sure:  I would not sit on the sidelines doing nothing as my granddaughter struggled daily with a debilitating disease.  Therefore, I took the initiative to start Kelsey’s Kaleidoscope in an effort to fix the problem by raising money and awareness so that kids like Kelsey, who are afflicted by PAN or other orphan diseases, no longer suffer. 

I had always known that I was motivated by unconditional love and an instinct to make things right and better for my children and theirs.  But I now understand that I have also been motivated by anger:  anger over the unfairness of it all, anger from watching my beloved granddaughter suffer, and anger from the vast unknown. 

It has been difficult.  Raising money and asking for donations to fight PAN is the most humiliating and humbling task I have ever performed.  Indeed, it is righteous anger that gives me the strength and the courage to do it. 

In just under two years we have had successful fundraisers, generous donors and many discussions with researchers, doctors and other families who struggle with the same issues.  The support and response have been overwhelming.

It is with my most sincere gratitude that I thank all who have supported Kelsey’s Kaleidoscope.  We could not do this without you, and we ask for your continued support as we channel our righteous anger to continue our efforts to find a cure.

Zen

The past few weeks have presented several challenges to us.  Some have been emotional and some physical.  With each new roadblock, we try to learn and grow as a family.  

Spending quality time with my son can be a challenge with basic activities, interests, etc.  Throw in a few other changes and balance can be hard to find.  It is something I make a conscious effort to do, but it is also a personal goal of mine to do better in this area.   Life can stretch us all too thin at times.

By request, my son and I recently went on a date.  He beamed from ear to ear for the duration.  He calculated our scores carefully during Dinosaur mini golf, hugged me between each of the 18 holes, and picked the coziest corner available for our ice cream treat.  He put his arm around me and talked far more than usual.  He made me feel special, and I hope to always do the same for him.  

While we were enjoying our sweet, he said that it was the day of zen.  I marveled at his vocabulary until I realized he combined our names and it was literally the day of “Zen” to him.  He was so proud to make up that clever little nickname for us.

My sweetheart.

Today, my heart was full of this new “Zen” as I watched my baby boy, the one who is too cool to dance with me and prefers play over talking, need me.

My mind went in many directions as something routine forced me to celebrate my family and our blessings.

I had more snuggles than ever and was even unable to leave his room without him stopping me to say, “Mom, I need you.”

Maybe it is just me, but those three words were all I needed to hear.

Zen, I need you, too.

Despacito Desconcertado, Embarrassed Slowly…

As a mother with two young children, I consider myself to have some wicked dance moves.  Though that may only be true in my mind, I love to get out on the dance-floor regardless.  It can be a release and gives me a sense of stress relief.

My son’s new favorite song is Despacito and I requested it for him at a family function this past weekend.  I heard the opening notes and awaited his presence on the dance floor.

I was lost in the beat and Kelsey’s lyrics when I looked up to see him in a far corner, grooving to the rhythm and beat with his cousin.  

I tried to get his attention.  I tried to show off some of my moves.  Nothing.  He stayed in the corner and did not even look my way.

Part of the parental struggle is knowing which battles to pick.  Though I could tell this was something more than met the eye, I waited to broach the subject until bedtime.

I slyly asked why he did not join me on the dance-floor for his favorite song.  His answer at eight-years-old was honest and a sobering dose of reality.

“The truth is that it is too embarrassing to dance with my mom in public.  I’m sorry.  I will still dance with you at home.  OK?”

“Did that just happen!?” I wondered in sheer and utter internal distress.

I thanked him for his honesty and sang him his lullaby.

Eight and embarrassed.  A battle among many others, that I cannot fight.

The following night at bedtime, he asked if we could dance to Despacito together.   Kelsey cued the music and I smiled.

I know he did that for me, and I’ll take it.

Motherhood

I’ll never forget the morning I learned I was pregnant.  Instinctively, I just knew.  I felt “different” and dizzy for at least a week.  The lines confirmed what my body knew to be true.  I also knew without a doubt that it was a boy.  

That moment will stay with me as one of the happiest moments of my life.  New life, excitement, and happiness.

Since that early morning excitement in July of 2008, I have watched friends and family members suffer loss.  I have seen that absolute excitement fade into depression and deep distress.  I have witnessed close friends struggle to conceive.  I thought of every one of those moments this Mother’s Day.

On Sunday, I walked alone into Shop Rite.  As I crossed the pedestrian walkway, the crossing guard wished me a Happy Mother’s Day.  Sans children at that moment, I thought about those losses, about those friends, about the women who would make incredible mothers but have not been given that gift yet.

The woman meant complete and sincere well wishes.  Was she a mother herself?  What if I was currently attempting to conceive and struggling?  I thought of those woman.  I prayed for those woman.  

Though it was just an act of kindness, it truly made me reflect on motherhood and all of its joys and challenges.  

I thought back to that moment when the positive lines surfaced.  The thrill of that moment and the knowledge that life was developing inside of me; it was pure excitement.  I can remember my own mother fearing every single day of my pregnancy straight through to my difficult delivery.  Knowing what I know now, I understand her concern and worry.

I realize that it is my opinion that the squeal of delight, genuine hug, or kind word from my child cannot be equally matched by anything else in the world.  However, that unmatched, genuine love comes with great responsibility.  The reality of motherhood is much less regal than I dreamed it would be.  It is often thankless, difficult, and tiring.

Most mothers I know would have it no other way.  I proudly stand among them and pray that the woman who wish to become mothers will soon know the pain and the glory that comes with the title.

To moms everywhere, thank you for being you.  To my mom, thank you for giving me strength and courage when I need it most.

Finding Solace Together

The perfect storm of few positive changes, new marks, less sanity, more daily or double injections, little sleep, and an uncertainty of when those medications will end has not been easy on my marriage.

Sometimes, I want to be calm when I cannot.  Other times, I want to cry when I cannot find tears.  I often hide behind a book or try to sleep because I am out of energy and out of words.  We both do this at times even though we try our best to stand together.  Sometimes it is exhausting.

We try our best to communicate naturally and normally.  Most days, it happens with ease.

Other days are not so good.  We both find our own ways to cope and sometimes it is not in unison.

For a few weeks, it felt like we were more out of sync than ever.  It was troublesome and created new stress for us.  I’m sure many who have been married for a long period of time have had similar glitches over other reasons.  Not us.  Brendan and I have always found a way to be in sync.  Our secret has been to somehow be exactly what the other needed at precisely the right time.  So this was scary and strange, uncharted territory that I did not want to travel.  We were our sadness instead of our solace.

Sometimes, finding time to say the words that are difficult to speak is all you need.

This weekend, we were given the gift of laughter and time together to celebrate Brendan’s birthday.  Though the weather was fiercely cold, our puppy grew ill, and our restaurant choice turned out to be a comedy of errors, it was precisely what we needed.

I realize that every day moments are full of surprises for everyone.  No one ever said marriage was easy.

Happily, this week, I celebrated the happiness and health of my husband who grew another year more handsome and wise.  I fondly sat beside him and we laughed like we have not laughed in a long time.

It was just what I needed, and I thank the village that helped us manage to sneak away.  We remembered to take time to love one another and laugh together, in unison.  I am grateful for the patience and the strength of our marriage and all that it helps me accomplish day in and day out.


Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-9 P.M. at Phily Sports Bar.   The night will feature games, contests, and fun.  Win some liquor, share a toast, and help us raise money for our cause.  $35.00 will get you an open bar from 6-8, food, and festivities. 

 

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.