Tag: #gratitude #newviewforpan

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.

Click on the link to see the cause or donate!

Tucked Away in Dreams

The end of a school year is near.  This end mark is causing reflection, pride, and accomplishment in our household.  Though we are weeks away from the close, my children seem particularly anxious about the last day of this school year.

Along with the kindness and respect my children have gained by their experiences this year, wisdom is also evident in their daily instruction.  The lessons of the year are adding up to a sum of happiness and joy overall.

These lessons do not come without disappointment, too.  Whether the disappointment is missing a question on a test, a conflict with a friend, or a scheduling dilemma, disappointment comes when we care the most.

My son and daughter went to bed feeling disappointed tonight.  Sadly, Kelsey was saddened by her peers not understanding her disease (something she brings up almost daily before she closes her eyes).  My son was disappointed in a scheduling conflict.

Neither felt satisfied with our parental responses though we always try our best to explain matters in clear terms.

A part of love, however, is resolution and though our conflicts may continue to exist in the morning, our fears and emotions are tucked away in dreams for now.

In a field… part 2

Artistic talent and creativity are two gifts I admire.  When those two gifts are combined with thoughtfulness and kindness, the possibilities are endless.

A caring colleague saw Kelsey’s take on the phrase that matches her spirit animal, Uni, last week: in a field of horses, be a unicorn.

She took it upon herself to create the above image for Kelsey.  I was beyond touched by the gesture and the beautiful image that now captures Kelsey’s new catchphrase.

Kind and caring individuals surround us every day.  I am grateful to work in such dedicated and sweet community.

Thank you for depicting Kelsey’s image, inspiring her artistic talents, and reminding her that prayers and thoughts extend beyond her imagination and her dreams.

We  will frame this and hang in a location of Kelsey’s choice.

Kindness…pass it on…

Teacher Appreciation

There are many amazing facets of my daughter’s teacher this year.  She is thoughtful, kind, generous, and loving.  The students in her room feel loved, appreciated, and special every day they are in her care.  You sense it in the room and hear it in the children’s words.

This weekend, Kelsey came home beaming with pride over the “special” day that would happen on Wednesday.  Though it may have been an absolute coincidence to couple stuffed animal day (she’s bringing her Spirit Animal, of course) with a snack on Wednesday, the fact that this would be happening on Kelsey’s needle day made her smile all weekend long.

“This will give me something to smile about in the morning rather than cry my eyes out as usual,” she said, loud and clear.

To all of the teachers who brighten their students lives with thoughtfulness, empathy, and dedication, I thank you.

Mrs. P, YOU have been a remarkable influence on my daughter’s life this year.  It is no surprise she idolizes you, but more than that, you have given her reasons to smile often, inspired her curiosity, and fostered an environment that respects all learners.

Mrs. P, YOU ARE OUT OF THIS WORLD!

Mrs. P, we are grateful for you and all you have done this year for our girl.

Strength

The brave words below are from a young woman with dada2 (Kelsey’s PAN is a manifestation of dada2).  She is an inspiration to me, and I am proud and honored to share her words with you.  Thank you, Anna Maria.

My name is Anna Maria. I’m 24 years old and in February, I had a bone marrow transplant.  I can say what I experienced and what I live by myself. In July 2017, I was told that I had to undergo bone marrow transplant therapy and that I would have no other solutions other than that.

I found myself facing two paths: one was to decide to continue in the disease which would soon bring me to death, or decide to fight for a living and then undergo the bone marrow transplant. If I am still here, it is because I have decided the second way. When I was told all this, I was very scared because it meant postponing my degree, university exams, enrollment in specialist university, the carefree age, the outings with friends, and many other things.

I cried a lot, then I told myself that without health and the transplant, I would have renounced all these things and much else, I would have renounced life itself. In short, I would have faced a few years, always spent in hospital to feel bad. While with the transplant, I would have made some sacrifices in this first year, but then I would have had a beautiful life and I would have enjoyed all the things I lost.

So with courage, I took this choice or the choice to live. I immediately understood that it was an important step in my life and I am very happy with this choice.  I will always keep it in my heart and I will be able to tell it to others. Of course now my path is not finished yet. I’m halfway, but I can tell you that I’m very well. I came to a point where the white blood cells were no longer produced because the lymphocytes had taken over.  I suffered from very strong vasculitic episodes. All these problems had invalidated my life, I was not really well.

Transplantation is the best weapon currently available to eliminate vasculitic episodes due to DADA2 and is strongly necessary, if not indispensable, to refurbish the immune system.  To give courage regarding the issue of hair loss: I obviously lost them too, but if I have to be honest, I find myself much more beautiful like that!

After about two months from chemotherapy, my hair is already growing back. We who face all this, the pain, the suffering, we are special, and we are brave.  This gives us a march more than the others. I can tell you that I’ve never been so happy in all my life.