I look back on the past 3 years and feel amazed to be a part of Josephine’s life. Her world has given me a sense of understanding and patience I never thought I would have in my lifetime. I still look back and wonder what I did to deserve this amazing daughter I have before me.
So many times I would sit in restaurants, bothered by “those” kids running around or having meltdowns, judging “those parents” that “can’t control their kids” – I must point out SOME of the parents really DIDN’T control their kids, but then again, who am I to say???
We have become “those” parents … and that suits me just fine.
Josephine is who she is. She loves when she wants, kisses and hugs when she wants, talks when she wants, sings when she wants (which is ALL THE TIME and she’s got a gorgeous little voice, by the way) and melts down when she wants. There’s no predicting, no reason in some cases, many reasons in other cases. Yes, there are many times we TRY to control the meltdowns, but there are other times when she needs to go through her process. We make sure she is secure and safe. And we do take her out (usually my wonderful husband has that duty) if she is very disruptive. But this is who she is…at 1 year old or now 4 years old.
I admit I feel sad when I am around other kids her age or younger because I can’t help but compare. I feel a sense of loss, of mourning, even now, 3 years after her diagnosis – it doesn’t go away. We were at a party this weekend and Josephine was interacting with a little boy who had just turned 2 years old. The two of them were sitting there and I was in awe – at first I was in awe of how far “behind” she was from this boy – but then my negative awe turned to a positive awe because I could see how much progress she has made since her 3rd birthday. My sadness turned to pride.
Since last August, Josephine has grown mentally, physically and emotionally – she will now go to school in a car seat and NOT her wheelchair, she randomly runs up to be and gives me a kiss and runs off again (two milestones in one), she sings clear and strong, she can says WORDS…words, she recognizes those that matter so much in her world and giggles at the sight of them…she is growing more and more independent daily.
Josephine is our miracle. Our miracle that can celebrate who she is today and every day.
Happy 4th Birthday, Baby! Keep makin’ us proud – I know you will succeed in ALL you set out to do. That’s all I can ask for.
The Meeting of Josephine and Isabelle (Tetrasomy 8p Mosaicism)
by Krysta Senek
(Originally Published in CDO Newsletter August 2012, Issue No. 68)
Waves of emotion filled my gut. The fear of the unknown started to settle in my heart. This was July of 2009 — the day I got Josephine’s diagnosis of Tetrasomy 8p Mosaicism (Tet 8p). So many questions raced through my brain … Tetra what? What does the “p” stand for? What does this mean for our girl? Are there any other kids with this disorder? How can I meet these families? All I was told by our genetic counselor was “don’t go on the internet because there isn’t anything out there that you want to read.”
The genetic counselor was wrong! In fact, there was a VERY important person “out there.” A little 4-year old girl from Iowa named Isabelle Kelley and I found her by registering online with The Chromosome Disorder Outreach (The CDO).
Isabelle’s mom, Lori, and I shared stories about our girls, always comparing one to the other, especially since neither of us had contact with other families with Tet 8p. While in the back of my mind I always hoped we would be able to meet each other, in reality, I figured it would be in the distant future, if ever. After all, I have no family in Iowa and Lori has no family in New Jersey. I was wrong. Happily wrong.
You see, Josephine has a “guardian angel” by the name of Carmine Iacullo, the Grand Knight from The Knights of Columbus in Livingston, NJ. After a chance meeting one crisp day in October, a pasta dinner benefit was quickly organized by Carmine to give Josephine the specialized physical therapy she needed to walk. One benefit and $5,500 later, Josephine was attending MEDEK (www.novogrow.com) in New Milford, NJ and learned to walk independently. I saw one miracle appear with my little girl and knew another miracle could be created for another. Once again, Carmine and The Knights of Columbus agreed to fund the MEDEK therapy for Isabelle.
That brings me to June 9, 2012. I was driving to Newark-Liberty International Airport, with butterflies swarming around my belly. I was about to meet the Kelley family… and Isabelle. Again, questions raced around in my head … What are they like? Will they like me? What if Josephine and Isabelle don’t get along? Will I constantly be comparing my girl to theirs?
All doubts lifted quickly upon first site of the Kelley family. That first embrace with Lori felt like I was home. I was in the arms of another mother who “got it.” Then, looking into the beautifully deep blue eyes of Isabelle, I found my Josephine. Everything felt right and all those questions I had in July of 2009 disappeared.
The week that followed was one of the most rewarding and profound experiences of my life. I went from wondering what was going to happen to marveling in the similarities of our girls. Josephine had Isabelle’s smile. Isabelle had Josephine’s eyes. Both girls had each other for the first time. And Lori and I had each other. There were no apologies or explanations for our girls’ loud outbursts of anger and frustration. There was no embarrassment because of how our girls walked and talked. There were no judgmental looks wondering what was “wrong” with “those kids”. The entire week was filled with acceptance, joy and successes. In fact, after 10 sessions of MEDEK, I am overjoyed to share that Isabelle is now walking independently! The second miracle happened, just as I had hoped.
Looking back on that short week of my life with Isabelle and Lori, I think of where I was emotionally during that first year after Josephine’s diagnosis. I hardly recognize that mom who was full of doubt, questions and mourning. I have grown to not only accept Josephine for who she is and what she has yet to accomplish, I have also realized I am not alone. Josephine is not alone. We are part of the rare world of chromosome disorders. A world like no other. And I would never trade that in for anything. Ever.
Visit this link to watch Josephine and Isabelle’s news story, featured on NYC’s WPIX Channel 11, http://www.wpix.com/videobeta/e501b642-e287-404f-a081-5f2d7c0f095b/News/Two-Girls-Battling-Rare-Chromosome-Disease-Meet-For-First-Time .
For more information on Josephine and Tetrasomy 8p Mosaicism, check out our web site, www.normalforjosephine.com .
Looking back on last week, I feel like I was visiting my own personal Disney World – Tet8p World.
Izzy’s visit was so much more than I imagined it. Yes, the TV publicity was TOTALLY AWESOME, but what I will remember the most was a sense of belonging and understanding.
When Josephine was having a meltdown one afternoon (one of many, by the way), Lori came upstairs and said, very simply, “Ah, yes, I remember those days.” And each girl’s meltdown led to the other girl’s meltdown. A cacophony of cries in various patterns and pitches and all I could do was smile and laugh. Not laughing at the sadness of the girls, but at the similarity of it all at the same time. It was like J-Bean and Izzy were talking in their own language and got each other – it would be nice to have a lesson in their language – would definitely help us out a bit more.
I know we will see each other again and the girls will be in different places developmentally. And it’s my hope they will pick up right where they left off last week – ready to throw science and medicine to the wind and do what they do best – AMAZE and AWE everyone they put under their spell.
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.
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!!!
Isabelle had a very busy 6th birthday…news crew in the morning, followed by 2 tough MEDEK sessions, a playdate with J-Bean and ending with a nice slice of NJ pizza!
In between meltdowns, I was able to get these two videos of the girls playing together…well, near each other anyway.
Another posting of Josephine and food – two of my most favorites! Can’t live without either one!
This brownie-making moment was during a speech therapy session – learning how to follow instructions, learning about different foods, learning about different textures (not a huge favorite considering her sensory disorder), and the best part of it all, EATING THE BROWNIES!!!!
I am most happy to report Josephine’s new love, Corn on the Cob! Certainly taking after her ole’ mom’s love of that golden glory, especially with butter and salt. Hungry yet? Love this video of her attacking her first cob…
Carrie Underwood’s song has been in my heart since Mother’s Day 2008. I was on my way back from visiting my best friends, Janine and Jeffrey, in Massachusetts. They burned Underwood’s album, Carnival Ride, saying I would love it. That was an understatement.
I popped in the disc and headed back to NJ, with Little Sheldon in the back, sleeping from a long weekend with his best friend, Miranda.
Neither my hubby or I wanted to find out if the Bean-To-Be was a boy or girl. And I hadn’t really been clear with which one the baby could be. Until this song came on…
I heard the song, my heart was filled with butterflies, tears filled my eyes and I knew…I didn’t know, but my heart knew.
Fast forward 3 years later (almost to the day actually)…
I was driving up to MEDEK in New Milford and was in the mood for Little Miss Carrie. Popped in the disc and relaxed into the 30 minute drive.
All-American Girl came on. But now things were very different from 3 years before.
Duplications of 8p, brain disorder, low muscle tone, developmental delays, behavioral issues, hair pulling…Josephine.
My mind started racing about Josephine’s future. Would she marry the high school football star? Would she have a daughter of her own?
Tears welled up in my eyes, as they did in May 2008. But these were not tears of joy. These were tears of fears, tears of the unknown. Tears of tomorrow’s possibilities.
Then I caught myself.
Stop with the predictions. Stop with the unknowns.
I looked at the little girl in my back seat of the 2008 Saturn Vue and relaxed knowing my girl is who she is…An All-American Girl. Perfect in her own way. Perfect as God made her.
Enjoy the song and think of Josephine while you listen. It’s an amazing experience.
Check out our Superstar in the CDO (Chromosome Disorder Outreach) slide show. Josephine shines at 1:34!