Tag: #newviewforpan

Whirlwind Week Ahead

When it rains, it pours!

The week of celebrating Kelsey Hates the Needle and our quest to raise awareness and support for all children who suffer from illnesses requiring injections and those who suffer as does Kelsey begins on Tuesday!  We will take on the Windy City with a news spot Tuesday morning and a Wednesday book signing at Chicago’s Webster Street Barnes & Noble of Kelsey Hates the Needle .   One lucky winner who purchases a book that day will win a gift certificate to a Chicago steakhouse and tickets to a Cubs game!

From there, we return to our previously scheduled engagement on Thursday, August 8.  Our president and author of Kelsey Hates the Needle and illustrator, Krystal Almora, will host a book signing at Barnes & Noble in Deptford, NJ at 10:30 AM. @krystalalmora

One lucky winner who purchases a book that day will win a Golden Ticket.  This golden ticket will win 4 tickets to the Phillies vs. Cubs game of their choice on August 13, 14, or 15.

Meet the author and illustrator, enjoy Story Hour with your family, and win tickets to the Phillies vs. Cubs all while supporting our non-profit Wednesday in Chicago and Thursday in NJ.

 

Thank you to all who support our efforts and our girl.

Uncertain normalcy

When you come home from two days of testing and consultations from the NIH with a positive outcome, you smile.  Life is good.  When your child wakes up the next day with new marks, you feel disenchanted.  You feel like this cannot be happening (again).

You hope these new marks are just bug bites.  You were just tested.   You were just given a positive report.  You send the pictures anyway and await symptoms or the onset of something else.  You are in disbelief.

You shed a tear the next morning when the marks spread.

You start to worry more once the marks look like those you saw two years ago when lethargy and pain took over your daughter’s tiny legs.

You see the spread, you see the onset, you fear everything in front of you.

The village of support that surrounds you allows you to get through this hurdle, test appropriately, and inject as necessary.

You are scared and you are unsure of where this leads you.

Daily injections return to bring a sense of normalcy to an otherwise abnormal state of affairs.

You hope, you are grateful for all the doctors you have on standby, but you cannot help but feel …  something words cannot truly describe.

Storms we hope will pass

Each Tuesday night is unique.  The worry is constant and fear, worry, and sometimes anger are typical discussion points for most of the evening.

Tuesday evening was no different this week.  The marks all over the belly and the back were.  After a nice walk around a park and calming conversation, we thought our bedtime ritual would contain the easing of fears and the notion of sweet dreams ahead.

Instead, photos were taken, prayers were issued, and we are once again reminded of the mixed emotions we know the morning will bring.

The thunder outside echoes our inner fury and angst.

We hope the rain relieves the heat and our morning medication subsides our worry for another day.

In a Field of Horses…

In a Field of Horses, be a Unicorn.

May you always be a Unicorn, following your spirit animal …

Nanobots

The bond between a brother and sister can be tough at times. Various interests, ages, and hobbies do not always create a harmonic environment. We work very hard to foster respect, love, and friendship regardless.

Kelsey’s brother worries about her.  There is no question about that. Although he has seen her at her worst, he also sees her at her best. They compete, they laugh, and they play together at times in a way that warms my heart.

Every once in a while, I worry that he feels less special or just “less” because he does not have a medical condition that requires the monitoring and lengths we must go to for his sister.

Then sometimes, I really that he does understand and he is more concerned than I realize.  He was reading a non fiction text and surprised me with the text from above.  He said, “Mom, can you please read this?”

When I read about nanobots that can cure diseases, I stood still and listened.  “Mom, do you think this could be the cure for Kelsey that we are looking for?”

“Whatever it takes,” I thought.  Maybe someday big brother…

Here’s to hoping, wishing, and praying.

There’s Something Special

There’s something about a Sunday night outside.  There’s something even more special about a Sunday night outside when your daughter says she has a surprise in store for you.

She grabs your phone and puts on There’s Something Special from Despicable Me 3.  The lyrics, “there’s something special on the other side of this moment,” brings a tear to your eye as she comes to your side to hold your hand.

In my mind, the special moment is happening now.

She sways and sings with you for a minute before she releases and runs off.  The moments are fleeting at times, but you still smile.

She runs back to you with six dandelions in her hands.  “Let’s make a special wish, Mom,” she says and the moment now has you holding back tears from behind your sunglasses.

We each made two separate wishes and two in unison.

I will not write the wishes, but I am sure you can imagine what Kelsey wished for…

Something Special… indeed…

Spirit Animal

The power of a spirit animal is meant to depict  a member of the animal kingdom that embodies and conveys your natural, wild soul.  It also happens to be mentioned in a show Kelsey has been fond of recently.  The title is Alexa and Katie and the series depicts two best friends, one battling cancer as a teenager.  The show actually helps Kelsey feel better as she watches the struggles of these fictional characters.  Though they are in High School, Kelsey finds a connection in each episode.

Thus, when we walked into Build A Bear for a birthday party recently, the struggle to select a furry companion was real.  She contemplated and debated.  She paced and wandered.  She almost selected the colorful, rainbow bear like most of the other girls.  And then, she saw the one.

The rainbow tailed unicorn, dressed in an ice cream dress was named Addison after the main character of Zombies.  Before bed on the night we brought her home, Kelsey shared that Addison was, in fact, her spirit animal.  She claimed that the free spirit and colorful tail of her new furry friend was indeed how she feels inside.  Addison was “channeling her inner self.”

Unbelievable, I thought.

Though her imagination astounds me, I truly see the reflection.

UR SO Generous

When Anthony Urso and the Almoras join forces for a Pop Up charity event to celebrate Chicago the Chicago Cubs all while supporting Kelsey’s Kaleidoscope, Inc., the president jumps on a plane to attend the festivities.

We cannot thank Anthony Urso enough along with Albert and Krystal Almora for their support and generosity.

The clothing is incredible, the company is fantastic, and the support was overwhelming.

Thank you is not enough, but it will have to do for now

Anthony Rizzo, Albert Almora, Jr, and Krystal Almora pose with President, Mary Wagner, and Elizabeth Gregorio.

Anthony URSO family

Anthony Urso and President, Mary Wagner.

Whatever It Takes

Picture a day of quality time in the happiest place on Earth.  You see smiling faces and a little bit of magic awaits you around every corner.

As grateful and happy as I was to spend time in this land of happiness, I could not escape a hint of sadness as my seven year old could not take it.  Sensory sensitivity is becoming apparent in various ways and there was certainly a great deal of that happening at every turn.

The standing, the walking, and the lines were just too much for her to take.

Though she looked the part in every way, her body told her it was on overload.  We found many magical things to do while waiting for her brother to ride and explore with sheer delight.  We took a much slower pace and took many breaks.  While we waited, Make a Wish kids and others who were also facing a challenge passed by us.  For those children and my own daughter, I struggled at times to face a cold, hard fact.  My child could not experience this trip like many other children her age do.

Her legs could not handle the walking and the weight of her on my back more times than expected was just a realization that careful considerations and thought must go into every thing for Kelsey; happy times included.

In the end, she found  a heroine in Star Wars’ Rey and there was one souvenir she just had to have.  Holding her father’s hand at a point when she felt strong and confident, she strolled with pride.

In this moment, I was happy.  She is a warrior and for her, I will do:

“Whatever it takes
You take me to the top, I’m ready for
Whatever it takes,” Imagine Dragons, Whatever It Takes

Whatever It Takes. For you.  Always.

Mothers

Typically in the moments after giving my child a needle of life-saving medication, I dash upstairs both to run away from the nauseous feeling in the the pit of my stomach and to block out the shrieks of pain caused by my injection.  I usually put on my jewelry for the day and take a moment to breathe.  It’s our routine, and we all try our best to make it “ok.”

When Kelsey chose me to inject the medication, I did not think I could handle it.  Though we were both trained, my husband started the process first and seemed so much more competent and strong than I thought I could be as he injected.  I was the comfort and that role suited me fine.

Today’s injection was a particularly tough one.  In truth, perhaps they all are, but I often run away instead of having a moment to reflect on it.  As I sit to find strength in the joy of laughter now surrounding me, Kelsey comes over to me.

She sees my face and touches my cheeks with her hands.  She says, “Mom don’t be sad that you hurt me.  You did hurt me today, but I know you love me and that’s why.  You just want me to feel better.  Ok?  It’s OK Mom.”

OK?  Is it?  The truth is, it is not really OK.  It is not really OK because my child’s presence to offer me calm is the reverse of what should happen.  Her gentle smile and sweet touch leave me with no choice but to smile back at her.

As any mother knows, when your child asks for you, there you are.   Those are moments when inner strength and pure love take over without knowing how you do it.  You just do it.  You find a way to be ok.

Mothers, I want to thank you for all that you do.  I would like to thank my mother especially because there are many things she “just does” now and those that she always has.  During times when I am not sure how I have made it through a rough day, week month, or year, I sit back and think, I did it because I am her daughter.

I hope someday, when a cure is found and my daughter is thriving, she will look back and see a reflection of all of her strength, all of her courage, and all that she has done in her life to help me be OK.

Help us with this cause by supporting our Designer Bag Bingo.

4/5/18 – St. Charles Borromeo Church Hall – 7:00 PM