17 vials to Phanatic Fun

The routine response to 17 vials of blood taken to check, maintain, and sustain still makes a parent weak.

We leave the National Institute of Health Sciences feeling tired and breathing a few sighs of relief.  Two full days of testing, talking, and questions is tough to endure.  The entire visit was kept exciting because, “I am going to meet the Phillie Phanatic,” Kelsey told anyone who would listen.

Jake Arrieta of the Philadelphia Phillies had impeccable timing to offer his suite for a charitable night for Kelsey’s Kaleidoscope, Inc.  All day long, sporting her Phillies shirt and hat, Kelsey remained positive and focused on the game and a chance to meet the  Phillie PhanaticThank you to the Arrieta family and our generous donors for making the evening full of fun.  Though they did not win the game, we came home positive and grateful after a long two days.

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.

Wednesday on Saturday

Wednesday Addams… a classic television character was the recent choice of a party we were invited to with an Addams Family Theme.

Wednesday, “the dreaded day” seemed fitting in many ways for Kelsey.  The mention of the weekday sends a jolt of fear and frustration to Kelsey each week.  We were surprised that she decided to dress the part, but being Wednesday “the worst day of the week” on Saturday made her smile.

Kelsey said that this was the first and probably last Wednesday she would enjoy talking about.

Wednesday on Wednesday does not have the same sentiment, but at least she found a way to smile for Wednesday (on Saturday).

Global truth

Though the passage of time in summer months seems fleeting, this summer is one where we are trying to savor the moments we have together in sunshine or rain.

As a week of storm clouds captures our summer days and nights, we have found time to walk/ride bikes in the rain, make slime, play games, and smile despite our recent fears.

Our social media connection to other patients around the globe has recently found several cases of dada2, the genetic condition which manifests as Polyarteritis Nodosa for our Kelsey, in India.  Each story is unique and this global connection makes us feel a mix of deep sadness, empathy, and hope.

Each time a new patient reveals  his or her struggles, strokes, or current health concerns, a sense of fear strikes internally.  I read their stories with tear-filled eyes most of the time, wishing there was more I could say to ease their fears or comfort their frustrations.

The truth can be more sobering than we want it to be at times.  This week’s stories and patient truth has certainly done that for our family.

We hope and pray for all families that they will not continue to face these fears and our global partnership will lead to the cure we all desperately pray for day after day.

The Weight of Wednesday

Funny how a day of the week once so arbitrary holds the weight of the world for us these days.  Last week, Wednesday brought relief through an injection.

So far, so good.  The dose did its job for now.  Labs were not great, but they did not signal any further alarms.  Observation and instincts guide us now.

This Wednesday, we wait to see if the dosage is right.  We wonder if it is enough.  We feel immense gratitude for the prayers and well wishes we have received over the past few days.  The worry and waiting have been a struggle, to say the very least.

If you read these posts, we thank you.  You are aware of the weight of Wednesday and the range of emotion it brings.  Sometimes the weight resembles fear or anger, other times it is a sense of gratitude or courage, and every now and again, it echoes strength.   Each Wednesday is also a time of reflection.  These words help release the strain and stress.  Each like, view, or comment reminds us that there is always a community to care for us and stand by us.

May the weight of your Wednesday be sparse today.  We catch our breathe today and hope our weight is light, too.

Just Like That

Just like that, you cannot help but bring fear forward.  It starts with a limp, continues to an evening pain that must be fierce for it wakes a sleeping Kelsey with sensations strong enough for tears.  Concern, fear, and worry consume your weekend.  Though all “appears” well on the surface, the doubt connects you with doctors out of necessity.  Blood work is ordered with urgency.  Life turns upside down again in your home.  You also know it could be worse and pray it remains merely a concern.

Then, just like that, you are taken back to a painful trail of memories.

You check in at the lab; a very routine practice.  There is no concern or fear for Kelsey because unlike the horror of a weekly injection, lab work is less often and for some reason, less concerning or worrisome to Kelsey.  The brave and strong girl has no presentation of worry.

Another young man (baby by the sound) does not feel the same way.

He screams in pain for twenty minutes.  All the while, the staff does their best to calm him down and the mother does her best to do the same.  

Nothing works.

We sit in silence and I cannot help but drift back in memory to painful times when that scream was the norm and that pain was hers.  Tears stream and I would like to go back and offer that mom a hug.  Kelsey wonders the worry that brought that parent and child in today.  I do, too.

The doors are closed and no one else is the room.   We hold hands, and I pray for that little screaming voice inside and our own silent voices.

Twenty minutes later, “it’s over” is calmly stated by the staff.  The mom took five more minutes to calm her child down.  As they walked out of the office, distraught, I offered her a warm glance.

It’s now my child’s turn and though she does not scream externally anymore, we’ve had enough of those moments in the past to know how worried she is inside.  I put on my best face and smile to offer her comfort and calm.  Her determined face keeps me going, though I cannot escape the pain felt through confidence instead of crying this time. 

We hope, we pray, and we await results hoping we worry a little less when we do.

Water Park Play

Fun, sun, and no shade for miles.

90 degrees was perfect for water park play.  After recent theme park debacles and 3-D golf struggles, I was not sure what the water park attempt would bring.  For Kelsey’s brother, the day was sheer joy and adventure.

For Kels, sensitivity, anxiety, and fear regarding “medical condition” warnings surrounded us all day long.  Reading opens all doors, including the ability to read the warnings as a child already concerned about these activities.  Kelsey settled on a few pool slides and attractions typical for younger children.  She squealed with delight with their low-height thrills.

Twelve laps around the lazy river were the favorite of the day until a rope course piqued her interest and challenged Kelsey’s strength.  Her greatest triumph was five seconds and about two arm-lengths.  She was happy to try and we were all happy to watch her smile.

The challenge for me as a parent today hit me deepest while awaiting for a small slide.  Toddlers and young children pushed their way in front of Kelsey.  Those who know Kelsey are keenly aware of her assertive and strong presence.  Kelsey, in this moment, said nothing.  She stepped back  instead.

When I asked her why she allowed several children to step in front of her, she said with a smile, “they were little kids and they were just having fun.  I was just glad to be there.  I really didn’t mind.  One even had a bathing suit that was starting to fall down.  He needed to get down to his mom to fix it for him.”

My challenge was then put into perspective while viewed through the eye of a child who finds joy and fun in the smallest moments of every day.

Balance

Strength. Endurance. Determination.

These words came to mind while watching a group of young gymnasts at my first ever gymnastics expo.   Some girls were timid and others exuded confidence with each step.  Each tried and each did their best.

Balance was the most challenging for Kelsey.  I found it symbolic watching her with each step and each breathe.  Balance is tricky for us all.  Whether it is balancing family and work, technology with reality, or any combination of things in between, life can be a great balancing act.

Kelsey made it to the end and left the beam with a giant leap.  She fell and stood back up with a smile.  Without hesitation, she stepped right back up and finished the routine.

She always inspires me to lead with love and find positive every day.  Today was no different.  In fact, today, watching her balance helped me feel a sense of pride to know that she is managing balance and trying her best in all that she does.

First Grade

Today marks the end of Kelsey’s first grade school year.  We have seen her soar with confidence and wisdom this year.  It seems she has also learned to dream big.  We will always encourage her dreams and hope to help her reach them.

Birthday Wishes

Family is truly the epicenter of this foundation.  Without the love, support, and generosity of our families, we would not be the organization we are today.

The love we feel from our family also lifts us up.  We have met new families on our family support group site and pray for the families around the world afflicted with PAN and dada2.  It is not always easy to digest the reality of this disease and the daily strife it causes for families.

Last week, we tapped into social media with another feeling; hope.  We know that we are not alone in the rare disease community and we try to lift each other up as a result.  Sometimes, when things get dark, you need to find strength in those around you.

A dear family member has been struggling with her own battle and for her birthday this year, she wanted to do something special for Kelsey’s Kaleidoscope, Inc.  Inspiration can come when you least expect it.  Though she already reached her goal, I invite you to view her fundraiser and want to thank her for spreading awareness and raising funding for our fight.

Love.  Hope.  Gratitude.

May your birthday wishes come true, Jessica.

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