Author Archives: Krysta Senek

TETRASOMY 8p MOSAICISM is NATIONAL!!!!

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My heart is exploding with pride and joy and my eyes are crying enormous tears of happiness!  After 3 years of fighting to get the word out about rare chromosome disorders, TODAY, the dream came true!

WPIX Channel 11 Morning News aired a segment by reporter, Dan Mannarino, about J-Bean and Izzy meeting for the first time.

The PIX web site has received thousands of hits and Dan got a call from AOL.com, asking to make our story the video of the day…

Now, when you Google the title of the video, the search results show the video is on the web sites of KTLA (Los Angeles), Fox 5 San Diego (San Diego), Chicago Tribune (Chicago), Fox 59 (Indianapolis).

My hands are still shaking as I am typing!

And I just found out that a parent registered with The Chromosome Disorder Outreach because of the story.  AMAZING!!!!

Of course, I need to thank Laura Gallagher for bringing it to the attention of the executive producer at WPIX News (name withheld until I get permission to add it), Dan Mannarino of WPIX Morning News, Carmine Iacullo and the Knights of Columbus, Azriel Novogroder of Novogrow and the simply wonderful Kelley family…none of this could have been completed without each and every one of you!

Without further ado…THE VIDEO!!!

http://www.wpix.com/videobeta/e501b642-e287-404f-a081-5f2d7c0f095b/News/Two-Girls-Battling-Rare-Chromosome-Disease-Meet-For-First-Time

Pictures of Two Beautiful Girls

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We were able to capture a real adorable moment with Josephine and Isabelle bonding at the end of the night.  Too precious!

And I still can’t believe Isabelle is here.

I was holding Isabelle while these pictures were being taken.  She wanted to cuddle with me.  My heart was filled with pure joy and amazement the whole time I was holding her in my arms.  Part of me wanted to cry (happy tears), but the other part of me took over and said, “This is not about you.  Focus on this wonderful girl laying on your chest.”

And that’s just what I did.

What an Amazing Day – After the Meeting of Josephine and Isabelle…6-11-12 @ 12:02 AM

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I feel validated.  I feel inspired.  I feel in awe.  I feel…happy.

Josephine and Isabelle had a wonderful first day together.  I will be posting the video of their first of MANY play times for the week, so keep an eye out for it.

Since Josephine’s diagnosis in July 2010, there have been many times when I have felt alone in this journey.  No matter how many times people say they understand how I feel and no matter how patient people are with Josephine’s behavior, they can’t truly understand my heart and how it breaks throughout the day or week.

But Lori and Mike Kelley CAN understand.  And that mutual understanding brings tears to my eyes…now in fact.

When I look at Isabelle and Josephine sitting next to one another, I see a bond.  A peace.  I see Josephine in Isabelle and Isabelle in Josephine.  Same voices, same eyes, same mannerisms, same body type, same smile, same crooked index fingers.

I finally feel an acceptance and relief I have wanted for almost 3 years now.

Please don’t get me wrong and let me be clear – we have the most amazing and supportive family and friends EVER and I am extremely grateful and lucky.  We could not have gone through these last 3 years without those friends and family.  We are blessed.

And now we are blessed to have the gorgeous and supportive Kelley family in our lives for this week and, I know, for many years to come.

We share something very special and unique.  We share Tetrasomy 8p.  But most of all, we share two inspiring and adorable little girls that are taking this world and flipping it on its ear!

WAY TO GO, J-Bean and Izzy!

 

Before The Meeting of Josephine and Isabelle…6-10-12 @ 9:12 AM

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I am so full of excitement and anticipation right now! Why??? Because in less than 1 hour, our little J-Bean will be meeting her partner in crime, Isabelle!

Isabelle is almost 6 years old, from Iowa and was born with Tetrasomy 8p Mosaicism, just like J-Bean.

This is a meeting, not only for the girls, but for me as a mom and us as a family.

I will finally be able to talk to someone face to face who TOTALLY gets it when Josephine has her meltdowns. When Josephine won’t eat or gets mistaken for a kid half her age, this mom and dad will be able to understand.

There is no hesitation, no anxiety, no nervousness. Just excitement.

I truly didn’t know when or IF this meeting would ever happen and now it’s HERE!

WAY COOL!

In the Words of Oprah: “I’m Back America”!!

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Well, well, well…look who decided to get back into writing…I know, I know…I am hearing it from everyone who follows J-Bean: “What’s happening with Josephine – you haven’t posted anything since the first day of school” or “I don’t have Facebook, so I need to read her web site to know what’s happening” or “Get off your duff and write – it’ll make you feel better”.

So, here I am…Ready to fill you in on, oh, I don’t know…THE LAST 9 MONTHS!

I think the best way to recap the 9 months is to break milestones into sections, rather than month by month – Lord know I can’t remember what I had for breakfast, let alone try to recap each month since September 2011!

Pride and Joy Minus the Tears

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I did it!  I made it through the first part of Josephine’s journey – getting ready…

…riding the bus…

…and off to school!

Now is the next step…making it through the school day!  Something tells me I will be fine.  This is what Josephine needed and what I needed.  She is good and that helps my heart smile.

This is the Moment.

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In 7 hours and 40 minutes (give or take a few seconds), my little girl will get on her first school bus and head off to her first day of preschool at P.G. Chambers School in Cedar Knolls, NJ.

I AM FREAKING!!!  And I haven’t gone to bed yet!

I have been so excited for this moment and played it out so many times in my head.  I imagined celebrating after Josephine rides off into the sunrise.

Instead, I will be following her bus, most likely in tears, to make sure she is all settled and adjusting to her new school.  After all, Josephine will be there every day from 9:00 am – 3:00 pm, so should be comfortable and happy.

Butterflies are racing around my stomach as I type.  Don’t know if I will be able to sleep.  Not what I expected.  I thought I was stronger than this.  Then it hit me…I am a MOM whose daughter is going to school for the first time.  Why wouldn’t I cry?  Why wouldn’t I be nervous?  I am a mom who’s had a companion (no matter how loud the cries or how frustrating the days) since August 27, 2008.  And now she’s leaving.

Wow!  It’s a lot to take in and process.

I’ll check in with ya once I am back home from school, as long as I can type through my tears of happiness, sadness, nervousness and most of all, PRIDE.

My little girl is going to school.  Wow!

Happy 3rd Birthday, Josephine!!!

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Three years ago, you brightened our lives with your tiny smile and large spirit.

Two years ago, our world changed up again and we didn’t know what to expect or when.

One year ago, we continued to wonder, hope and dream.

Today, our dreams are coming true and our little principessa is our miracle!

You can stand on your own, slowly walk to get a toy, tell us what you want (maybe not in complete sentences, but we get ya!), laugh at silly things, shine your gorgeous smile whenever you see fish, scoot around teasing our dog and generously give tons of hugs and kisses with the most amazing warmth and love.

Thank you, Josephine Betty Joy.  Thank you for shining in our life.  For teaching us how to get through the rough patches.  For showing us the world through your beautiful brown eyes.  For being you.

I love you, Darling Jos-a-Bean!