Category Archives: Uncategorized

Special or Spoiled?

Posted on by
1

I often wonder what people think of our family when we are out in public and Josephine has one of her wonderful meltdowns. Do they think, “What a spoiled brat” or “Why aren’t those parents doing anything” or “Poor parents! Maybe they need a break”? Most of the time, by the look on their faces, it’s 1 or 2. In fact, I think 3 is a near impossibility!

And I don’t mind the stares or the opinions or the sympathies. I take it all in stride. Just part of being a parent of a special needs kid.

But when Josephine gets so out of control that our own favorite therapist is at his wits end during a session (last night’s session, in fact), I have to question myself and ask, “What can I DO?” and “What am I NOT doing?”.

When Josephine wakes up from a nap, or from a good night’s sleep for that matter, she is upset, cranky and many times, unruly and inconsolable. Yesterday was no different. This afternoon was no different.

Often I try to calm her down by cuddling, offering her a drink or snack, giving her the favorite stuffed fish or perhaps the absolute best of the best, her socks. Forget the cuddling – AIN’T HAPPENIN’! She shoves the drink/snack and fish back in my face. And just when I think the socks are the answer, more hair comes out…more spit to clean up…more screams…more biting (not me, thankfully)…more frustrations. So I let her cry and freak until she calms down, which generally takes at least 1 hour. I don’t know what else to do.

I know part of her frustration and anger comes out of not being able to tell me what she wants or needs. I can only hope as she gets older, these meltdowns decrease. But I have to live in today and figure out how to handle the now.

So, is it spoiling or survival? Call it what you will. I call it my life.

Pictures of Two Beautiful Girls

Posted on by
Reply

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

Posted on by
Reply

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

Posted on by
Reply

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”!!

Posted on by
Reply

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

Posted on by
1

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.

Posted on by
2

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!

Josephine’s School Announcement!

Posted on by
Reply

I know, I know…Where have I been? What has been happening with Josephine? Where is she going to school? When is she going to school? So many questions. And all will be revealed in due time…Well, maybe not. How about now? Do you have your coffee and doughnuts ready for a nice read???

SCHOOL

I am proud to announce Josephine is the latest addition to P.G. Chambers School in Cedar Knolls, NJ!

First day of school is September 8 and that is the first day I will be a mess!  I know this is best for Josephine and for me, but my heart is still all aflutter at the thought of my J-Bean being in school.  Yes, I am counting the days until she can start this new chapter in our lives, but I also know I will be wishing for her to be back at home for the first few days…or at least first few hours…teeheehee!

I WILL be following the bus on the first day, as suggested by the head nurse and Josephine’s teacher.  And I WILL be bringing my husband along because I know I will not be able to drive to and from the school, unless I can somehow manage to hold back the tears (both of joy and sadness).

Regarding the services received at P.G. Chambers, Josephine will be getting 3 sessions PT, 3 sessions of ST, 2 sessions of OT, a bus aide, a personal aide and air-conditioned transportation in her wheelchair to and from school.  We will also continue with MEDEK privately with Azriel 2x a month.

WOW!  I really can’t believe that day is almost here.

I truly have to give major props to the caring and patient staff in the West Orange School District Student Support Services Department.  I was honestly prepared for a battle like no other after hearing about other parents’ horror stories with their districts.

From start to finish, Josephine’s placement process was top notch!  Our Case Manager, Alexis, was outstanding and went out of her way to give Josephine the schooling she needs and deserves.  The Student Support Services Director, Connie, is caring and treated us like people, not a number in the district.

Will we always have great success every time an issue appears?  Maybe, maybe not.  But I hope this thoughtful approach continues on, even if we DO have to butt heads a bit.