And Beyond…

When you receive a phone call from the National Institute of Health stating that an astronaut who studied DNA in space for four months would like to meet your daughter, you pause.

You breathe.  You realize the gravity of the moment that has been presented to you.  You are in awe.  You make it happen.

Kelsey and her brother were able to meet Dr. Kate Rubins, the first astronaut to sequence DNA in space, and it was as amazing as it sounds.

Kelsey was given an opportunity to speak with Kate and ask her questions one-on-one.  Kelsey and her brother each read Dr. Rubins’ biography in advance and each came prepared with 6 thoughtful questions to ask her.

The questions ranged from how did Earth look from the space station, what kind of food did you eat up there, were you ever scared, and when did you decide to become an astronaut?

Dr. Rubins was poised, patient, wise, and a true role model.  I would have hand picked Dr. Rubins for my children to meet.  She, however, picked us.

During the NIH Astronaut Presentation with over 400 audience members are 2,000 live streamers, I sat in true amazement of the moment.  We were in reserved seating as we listened to a first-hand account of a four month space mission from launch to landing and saw that Dr. Rubins is making her dream come true.  

Over dinner, Kelsey announced that today was the best day EVER!    She thought it was incredible that such a confident, intelligent, and clever girl wanted to meet her.  As I listened to Kelsey recount the day and all that she learned about Dr. Rubin’s work and missions, I could not help but think that as well.

Lessons from the Egg Hunt

We recently attended a huge egg hunt with a myriad of kids and parents.  It is an annual tradition and we usually have a blast.  This year, a variety of circumstances changed and as a result, so did the hunt.  This fun-filled tradition ended up being full of life lessons rather than laughter.  That leads us right to the rules of life and the lessons learned from the egg hunt.

Rule 1: Life happens.  Be early or on time.

We made it with only a few minutes to spare.  Traffic happens, life happens.  Be ready, but be on time.

The early bird does get the worm.  Those minutes to spare put us far back in the line-up.

However, I taught my children to be polite and wait their turn.  When the bell rang to initiate the hunt, all of the children would all be in the same place.  “Just be patient and wait your turn,” I reminded them.  

My two children did just that.  They were so excited.

Rule 2: Everyone does not follow the rules.  Do not let a poor example ruin your day.

One minute before the bell rang, a parent not only placed herself in front of my children, but also moved her children in front of mine as well.

What was I to do?  Decisions decisions… It was a trying moment for me (to say the least), and I had many phrases in my head that I did not want my children to hear me say.  

It was a moment to display self-control.  I took a deep breathe and loudly stated my apologies that not everyone in life plays by the rules (as steam was likely coming off of my scalp)!

I smiled and told them to have fun!

Rule 3: Be your own advocate and speak up when necessary.

Seconds later, the bell rang.  That woman was a steady blockade to both of my children and unfortunately the crowd had no other holes for my children to sneak through.  I had to step in at that point, politely excuse my children, and get them into the hunt!

My children were watching my every move carefully, and I had to decisively think through my every word and action.  

My words needed to echo what I want them to know and learn in life.  “Careful what you say, Children will listen…

Rule 4: You can’t always get what you want.

Minutes later, the hunt was over.  My son was easy to spot.  He had very few eggs but wore a smile anyway.  My Kelsey was harder to locate because she was persistent and still on a mission to find a single egg to call her own.

It did not happen.

Kelsey came out of the hunt completely empty handed.

I was certainly rethinking my earlier patience, but also reminded myself that this was a teachable moment.

Rule 5: Your family will always be there when you need them.

Consequently, those minutes and my patience cost Kelsey her eggs this year.  Her will was strong and her determination fierce, but with an empty basket, all she could do was run to me for a secure embrace.

I could not come up with an egg.   They were gone within two minutes.  I could only share the hug and tell her that there would be many more fruitful egg hunts in her future.  There will be.  I know that.  

It did not help.

With that came her brother to offer her a few eggs of his own.  He only had 6.  It was a rather precious moment.

I may have allowed a mom to block my children, but I also had a few tears of pride when my son shared his eggs.  

A brother was there for his sister.  I must be doing something right.

Rule 6: Sometimes, a kind gesture happens when you least expect it.

At that precise moment (I kid you not), the same woman who blocked my children walked by with the largest basket around.  It was overflowing with eggs…  Boy was it hard to hold my tongue then and there.

I had to repeat, “Careful what you say, Children will listen…

So I instead looked the other way, literally.  It was all I could do to remain calm.  What I saw when I chose to look at the situation differently was an entirely different perspective.  I saw a very thoughtful parent and sibling pair approaching my emotionally charged scene.  Her children had baskets with plenty of eggs, and I guess she watched our dramatic finish because her children offered some of their eggs to mine.

When one door closes, another one usually does open and the results are usually worth it.


Take a moment on this beautiful week to savor the sun and the beauty around.

My sweet baby girl reminded me to do so this morning.

She climbed into bed with a smile on her face and said, “Mom, I need you to open your eyes and look at something special.”

“What is it?” I said through foggy lenses.  

She was pointing to a reflection that the sun was creating on the wall.  There it was, glistening with every color of the sun.  The only way to describe the colors and the patterns shining through the curtains is to think about the inner workings of a kaleidoscope.   I would never have noticed it if she had not pointed it out.

“Isn’t just so beautiful Mom?”

“Yes, Kelsey, it is.”  It truly was magnificent.

A morning reflection I would not have stopped to recognize otherwise.  Stop and recognize the beauty today, bask in the light of the sun, and smile.

My daughter endures so much, but she always stops to see the beauty in all around her.  She teaches me so much every day.

Joy in a twirl

Joy in the form of a twirl…

What grace!  What enthusiasm!  What fun!

This inspiration from my six year old came shortly after the news that we are ceasing the daily injections for the time being.  Words cannot express the weight I feel has been lifted from our morning routine and daily comfort.  

The overall result may have been full of joy, but interestingly, Kelsey first asked to continue the medication.

Her daily frustration…  Her day of double dose torture…

Her daily pain was actually asked for by request.   This medication must make her feel so great.  The knowledge of that was powerful and difficult to discuss aloud.  “I feel really good when I take it” was her rationale.  That sound logic had me question the entire situation.  So with the new relief comes a bit more worry.

For now, I smile.  I watch with amazement and a breathe a huge sigh of relief.  The weekly injection seems easier knowing it will be another seven days before I have to give it again.

Beauty.  Happiness.  Joy.  

Today, my daughter is my inspiration.  

Her twirl is sheer joy.


There is one constant strength that I do not speak of enough.

In many ways, he is the unsung hero of the day, every day.


He rarely seeks affirmation or praise.

He is strong, confident, and focused.


He is sensitive, thoughtful, and decisive.

Deliberate, sweet, and silly all at once.


He internalizes the world and carefully watches more than he realizes.

The world is tricky for him at times.  It is tricky for me to navigate with him.


He carefully approaches tasks and meticulously works.

Except when an electronic device distracts him…


Otherwise he is solid.

He is eight and he overflowing with great.


At times I cannot thank him enough for the happiness he brings me.

The joy, the content feeling of a snuggle, or just his presence beside me.


He made me a mom.

He can never fully understand what that means to me.


We discuss how he should “enjoy every moment.”

We reflect on our days.


Life with him in it is full of promise.

He offers our family so much and asks so little.


He sits beside his sister and holds her hand.

He gently kisses her cheek when she needs it.


He gives in occasionally to appease.

He is stubborn at times to keep it real.


We are so grateful that he is him.

There is no one else in the world quite like him.


My boy.  

Thank you to my one and only boy.

Luck of the Irish

“May your troubles be less

And your blessings be more.

And nothing but happiness

Come through your door” Irish Proverb

Luck of the Irish proudly shines on St. Patrick’s Day.   It seems to have held much promise personally.  The offer to sell my first home came in the late evening on March 17, my sister in law received her marriage proposal on March 17, and blessings seem aplenty on such a festive day.

It seemed like a perfect day to raise a glass and share a toast for my baby girl.

The day started off with happiness and many green accessories on the children.  Kelsey was full of joy and laughter.  She enjoyed a visit from a leprechaun at school, who even left a questionable green liquid in the potty!  Her day continued with a book “switcheroo” from a friend’s desk, and she came home with a beautiful drawing and writing that stated, “I feel lucky when I have my friends and my family with me.”

Lucky with friends and family, indeed we are.

Our collective efforts over the past few weeks and the generosity of our friends and family helped us raise $4,000 on St. Paddy’s Day.

May the luck of the Irish be with you if you shared a sentiment, donation, or gathered with us Friday evening.  

My family continues to be overwhelmed by the love and support of our friends and family.

As we walked to the car following the party, I must admit I was overcome with emotion.  I said to my husband, “Doesn’t all of this leave you numb?  It is hard to be in these moments and accept that this is our reality sometimes.”

“It isn’t real to you when you inject our child every morning?  That’s when it is real for me.”

My Irish husband sure put it into perspective.  We offer our sincere appreciation and thanks to those who know our reality and supported our cause.

Our village is growing, and we are extremely grateful that it is.  Sláinte!


There are few moments when you break down with strength, belief, and hope simultaneously.  Today, I broke down with all three.  It was quite the trifecta.

Recently, Kelsey has been curious about selecting the location for her shot.  She “picks the spot” and seems to feel a bit more at ease by having a say in the process.  She takes her clean, tiny finger and touches various areas.  She tries to find just the right one.  Unfortunately, the spots have been difficult to locate anymore as her skin texture feels rough and more difficult to pierce.  The mornings have been a little bit more difficult (as one may imagine) for her to bear as a result.

Tuesday evening,  I walked into Kelsey’s room to find her fast asleep, snuggling with her prayer shawl instead of her typical rotating stuffed doll.  She took it upon herself to find comfort with it.  It was a bit overwhelming to see.  I wondered if she prayed for an easy Wednesday because it is a day she fears all week long.  

So I asked her about it in the morning and wondered if she remembered taking the shawl before she fell asleep.

Her response was so matter-of-fact, “Yes.  I have been praying for my needle to stop every night.  I really want them to stop, Mom.”  

As do I…

This Wednesday’s injections were among the most challenging we have faced in a long time.  Kelsey shrieked and then she wept.  Her Daddy’s arms gave little comfort as she screamed at an ear piercing level.  In true Kelsey form, she wailed an apology for selecting such a “bad spot” two times in a row.

I screamed my own thoughts silently, but they were certainly not directed at my baby girl.

Tonight, I walked into Kelsey’s room to find her sleeping on top of the shawl.  This time, she was not holding it.  Rather, she carefully and neatly placed it over her pillow and slept soundly atop it.

The sweet image of her dreaming upon the shawl gave me a certain sense of calm, a certain renewal of belief.

I can only hope that her dreams were as serene as she appeared and that her prayers will be answered.

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.

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. 


“I cannot go on like this”

We arrive home on the last gorgeous afternoon of February. Kelsey and I walk the dog, get the mail, and enjoy the weather for a few minutes.

When we finished homework, Kelsey hid between pillows and pouted. She was sulking in a way I have not seen in a while. Immediately, alarms flash and trigger.

“What is it Kels?” I ask shaking.

“Mom, I just cannot go on like this.”

“Like what?”

“I cannot go on with a daily needle, Mom. How long is this supposed to go on? I just want it to stop!”

With that, tears streamed down her face and mine.

Though she inherited my dramatic gene, this one was honest and raw.

I was at a loss.

I am at a loss.

Help us this St. Paddy’s Day day by joining 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, food, and festivities.

The Art of Kite Flying

Saturday was unseasonably warm.  The sun was shining and kids were outside gleefully playing.  The kids rode their bikes, enjoyed a soccer game, and even played a few rounds of the classic, hide-and-go seek.  It was glorious.

Smiles were wide and we all shook off some winter blues.  The timing could not have been better.

After a while, Kelsey emerged with an unopened kite box.  She was on a mission to fly her kite.  Step one, open the layers of tape and packaging to locate the kite and its many components.  A multi-color butterfly appeared before our eyes at completion.  Kels was overjoyed.  The only problem I saw was a lack of wind…

Kelsey saw no problem at all..

She eagerly and patiently helped me affix the thread and metal springs.  It seemed that she found joy in every step of the process and squealed with delight as the flat material transformed into majestic butterfly.  

Truth be told, Kelsey’s daily injections have been tough to endure this week.  We are all ready to find a new routine.  Though we trudge through the motions because of their importance, we feel a little defeated by 7 A.M., too.

Thus, the return of the sunshine and warmth did us all a world of good.

We still had to fly our kite.  And when Kelsey is on a mission, there is no stopping her.  Persistence could truly be her middle name.  The child will not quit.

Every new attempt to fly made her focus even more on her goal.  She lengthened the rope, held it tightly, tried, and tried again.

Her determination inspires me.  Her strong will found a way and though it was only a few yards of successful flight, her joy was infinite.

Saturday, I thank you for the breathe of fresh air that I desperately needed.

Looking for a fun and festive St. Paddy’s Day event?  Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-8 P.M. at Philly Sports Bar for games, drink specials, and fun.  Win some liquor, share a toast, and help us raise money for our cause.  Save the date.  More information will be posted in the coming days.