Distant Welcome

Front line providers and those working in essential services are our national heroes right now.  We salute, admire, and respect you all.

America’s heroes also remain on the front lines dedicating their service to our nation.  Our family was humbled to honor a year of service away from home in these strange times.  Our hometown hero was welcomed back with two streets lined with the simple message, “Welcome Home.”  Not a dry eye watched from afar…

The extended family stood from afar waving flags and proudly singing “Born in the USA.”  @brucespringsteen   In 2020, the Boss sings, “I woke up this morning just glad my boots were on,” in Western Stars.  We were born in the USA and are lucky to put our boots on…

#BandTogetherNJ

Hello (from the inside)

Like you, we pray and wait, from the inside.

COVID-19 is scary and unkind.  During our rainy weekend, Kelsey discovered this parody and had it on at least five times daily.  Funny, honest, and real, we sing alone to make the new normal one of hope, joy, and love.

Telekinesis

Yesterday on the counter, I read the words of a nine year old that hit hard in this pandemic.  Our state ranks number two with cases and we pray for our essential service workers and health care professionals.  We see you, we are apart, and we cannot wait to look back on this…

All my life, I wanted telekinesis to make my disease go away without it hurting.  The goal is to find a cure as soon as it is made, but doing it without pain requires telekinesis.  This is why telekinesis would be my super power.

In March, we could use telekinesis to everyone.  Keep them safe and stop the invisible virus.  Taking away the virus without any pain is the goal.  Telekinesis could save the world.

Be Brave Today

In the midst of so much uncertainty around the world, we attempt a pause to embrace our gifts and hug our blessings a bit tighter.

The words that continue to scare us are those which say, “Only the vulnerable will be at risk.  Your only is our everything.”

Please heed the warnings.  Please distance.  Please keep safe and strong.

Our global normal is changing daily.  Schools are closed and the toilet paper is sparse.  In times of despair, we often see communities come together and lift each other up.  Doing so from a distance is unique.  Digital platforms allow for daily check-ins and lines of love to continue.  We are grateful for those.

Today is a day to be brave and strong.  Have the courage to stay away and be uncomfortable within your walls.  A friend of ours once declared that March 18th would be Brave Day.  Little did we realize how brave we would need to be today. #ThisisHowIBrave

Our everythings are too important for risk due to a lack of understanding.  #Strongertogether #BeBraveToday

How will you brave today?

Rare Disease Day 2020 – Guest Post

Rare Disease Day 2020 – Guest Post
“When we were children we were each told that we were special, that we were rare.

We grew up to believe that rare is this wonderful, almost magic like quality that we should protect. Yet when we get older I feel that society attempts to alter this beautiful and pure vision of rare. Rare goes from being something special and unique to different and other. Something that is not understandable that sits outside of the norm.

Unfortunately we see that echoed too much today with so many people who are suffering from rare illnesses physically, mentally and genetically like me. None of us would admit—oh well this disability, illness, or mental illness makes me uncomfortable but we’ve all had that passing thought. Because we no longer look at rare as beautiful, as a different way of approaching the world, as something to protect fiercely—but something to fix.

Today on Rare Disease Day, I’d like to challenge that perception. Whether an illness is mental or physical. Visible or Invisible like mine I want to speak out and encourage those that feel alone and different. You can have a debilitating illness and still live a happy and successful life. You can have schizophrenia and still have a family. You can have a physical disformity and still be an athlete or a model.

Now I have personal experience with this. It’s not easy. There are days when I’ve been so sick that I’ve felt like giving up. Like my life wasn’t worth living. I questioned why I was this way and I wished for nothing more than to be normal. But then I asked myself what is normal. Having DADA2 is my normal and it has shaped me so much as a person in ways that I am forever grateful. The adversity that I have faced has given me a compassion for others. Has shown me my strength. Has taught me how to be a voice for myself and the downtrodden because I know that no matter what circumstances life throws at a person they can and will overcome it. I have learn the power of the human spirit and the resilience in heartache.

You are always stronger than you believe. Nothing can ever conquer you. God never leaves your side not even in your darkest, loneliest, scariest hour. Even when you curse Him and are angry at Him, He continues to faithfully love you. I have learned what true love is. I have learned to face what scares me the most to stare it in the face and say: you will not have me; you will not defeat me. I have learned that I can do anything I want. That I am capable of so much more than I ever imagined. I’ve learned balance. I’ve learned it’s okay to ask for help and okay to say no.

I’ve seen beauty in tragedy. Which allows me to see beauty in life. Allows me to appreciate life more fully even if it’s something as simple as the wind blowing cooly against my cheek. I’ve seen the true kindness that lives within all of us. Which makes me believe in the innate goodness of humanity. I’ve learned to let people in—to love fully even if it hurts. I’ve learned that people want to love me. I’m blessed with amazing friends and family that have supported me through ever up and down of this journey. You cry alongside me and rejoice in my victories. I’m beyond thankful for how each one of you have touched my heart and influenced my story and path.

Having a chronic rare disease is not easy. It is upsetting. It seems like a roadblock. It is scary. It is a challenge. But then I’m reminded of rare. And while at times I hate being rare because I feel alone or isolated. I feel underestimated or as if I cannot fit into this world. I remember the beauty of a rare flower. The millions of people that come together to preserve a rare fish. The rarity and gift of life and our planet itself and I want people to know about this rarity of mine and thousands of others. It should be celebrated and not hidden. It is what makes humanity beautiful and diverse. It can pull us closer to understanding one another rather than drive us apart. Provide perspective. Rare is beautiful. Rare is a little bit of magic on this earth and today we celebrate that magic and recognize how it enhances the world while also recognizing that rare doesn’t isolate you from the rest of the world. You are meant for this world. Do whatever you want. Be who you want to be—you are valued, you are legitimate. Your life has worth. You are normal. You are rare.”

  • A RARE and beautiful woman’s journey…

Flu Season Woes

Our amazing pediatricians are always helpful when we need them.  Recently, a prophylactic dose of Tamiflu had been administered to keep Kelsey feeling her best.

The next thing we know, Kelsey’s brother woke up warm and body aches started during day two.  Unfortunately, he was diagnosed with the flu even after receiving his flu shot.  Our house is now a zone of Lysol coupled with bleach.

We try so hard to shield our kids, but life is busy while we are making other plans.  While Tamiflu emerges once more in our home, we are grateful for the caring team that works to keep our family healthy.

Stay healthy out there and wash your hands!

Kindness for a Cure

Random Acts of Kindness followed a week dedicated to spreading cheer and joy at Kelsey’s School.  Then we were humbled with gratitude and our community’s support for Kindness for a Cure.  Kelsey lives in a community where she and another student suffer from a rare disease.  This year, one dedicated secretary (with the support of all around her) committed to supporting our local non-profit organizations for a school-wide fundraiser.  Wow.  The letter that went home is below:

One School’s Kindness for a Cure

February 10, 2020

Dear Parents/Guardians,

In coordination with the Great Kindness Challenge,  students, staff, and families raise funds for special causes each year. This year, our school will raise funds and awareness for two rare conditions that affect two very special students in our district. We will donate all the funds collected to the Shwachman Diamond Syndrome Foundation and Kelsey’s Kaleidoscope, Inc. Each organization will receive 50% of the funds.

To learn more, click on the links below:

Kelsey’s Kaleidoscope, Inc.

Shwachman Diamond Syndrome Foundation

Many of you may not be aware of these conditions and how they impact two local families, so we wanted to bring more awareness and attention to the rare conditions affecting Kelsey, a third-grade student, and Maggie, a fourth-grade student in our district.

We ask that families who want to donate coins, have their child bring them in a disposable container or baggie. Anyone who wants to donate via check, can do so by sending in a check written to either organization listed above. Donations can also be made online using the links above.

Our School is proud of the awareness we bring to our families and hope this fundraising effort can assist in bringing more attention and a possible cure to Kelsey, Maggie and all of those affected by these illnesses.

Thank you!  (All!)

We are blessed and grateful for this initiative of kindness.

 

#BraveSquad

The stress that a rare disease places on a family daily is sometimes hard to truly describe.  The quest for normalcy can sometimes drain us.  However, sometimes it brings us together in ways we never anticipated.

Kelsey’s brother has started a movement.  Since the start of the 2019-2020 school year, he has quietly supported his sister by wearing a BRAVE band.  It is a small movement, but one he leads daily with his BRAVE band.

When it was time to join a school club to support business ownership and the process of how to run a business, her brother and his buddies got to work.

Together, they designed unique items and together the #BraveSquad sold their items.  Proceeds of all purchases were donated to our organization.  We are beyond grateful.

Kelsey’s brother has looked forward to this night since September and he proudly sold 115 BRAVE bands with all proceeds going to Kelsey’s Kaleidoscope, Inc.  He does not always understand the rare journey we walk along together, but he has realized the importance of it in our lives.  He quietly supports his sister daily.  We are beyond proud.

#BraveSquad

#RareAsOne

Mark Zuckerberg, Facebook Founder, and his wife, Dr. Priscilla Chan, committed to the challenge, “Can we cure all diseases in our children’s lifetime?”  Daunting.  Amazing.  Fantastic idea!  Can they do it?  Here is to #hope…

On Monday, the couple announced one step in the right direction to conquer the challenge set forth in 2016.  They will offer grants to 30 recipients to advance research, training, and awareness.  Of the 30 selected, the dada2 foundation is one of the recipients to benefit from this large grant along with other resources over a two-year time period.

Wow.  We only hope our small community of dada2 patients grows and the resources lead to a cure for our girl and the many others we know with dada2.  Here is to hope and generosity in 2020…

#RareAsOne

A Legend Loss

Legendary and iconic have been words used to describe Kobe Bryant.  His love for the game and his family will be remembered fondly by all.

He was a role model, hard worker, and devoted father. #girldad

His Eagles’ victory dance went viral as his love for a city was made clear in 2018.

On a calm and quiet Sunday, a legend was lost along with the lives of other important lives.  Gone too soon.

To those who aspire to dream and achieve, we will remember you Kobe, and what you brought a city, a team, and a sport.  May your family find peace with those who suffered alongside you on that helicopter.

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Image result for kobe bryant quote