Author Archives: Sheldon Senek

Amazing Support for Josephine

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The pouring of support for our daughter Josephine and her friend Izzy has been nothing less than amazing! We are forever grateful to so many people who help us on a daily basis.

We all gathered in front of the TV this morning to watch the great story that PIX 11 News did on Josephine and Izzy and the rare genetic disorder they both share. We believe this story not only helped to bring some awareness to their particular disorder, but also the many, many people who have special needs.

Anyone who has a special needs child can attest that it changes your life forever. It’s true that some of your hopes and dreams change…but in some ways, for the better. You find yourself focused on the present–and not to think too far in the future of what may or may not be. Instead, we find ourselves everyday celebrating ‘what is.’

I work at a motivational speakers bureau (Eagles Talent) and one of my of my favorite speakers (W Mitchell) has a saying, “it’s not what happens to you, but what you do about it.” When we learned about our daughter, we had a choice, to be negative or embrace the positive. We chose the latter and haven’t looked back. Yes, our lives are filled with challenges, but we wouldn’t trade them for the world.

This has been an extremely special week for us as we have hosted the Kelley family with their little girl Izzy. We absolutely love her and have already developed a wonderful bond with her (we even got to celebrate her 6th birthday with her yesterday!). She has been her all week going to special therapy and already we can see that it’s helping! Words can’t describe what it’s been like meeting Izzy and her family–and will miss them when they return to Iowa (sooooo glad we have social media to keep up to date!)

We filled blessed to be involved in the special needs community (and love the school that our little JBean attends PG Chambers) . We also feel extremely bless to have tons of support from our family and friends.

We look forward to sharing new information about Josephine and are going to work towards starting a foundation for kids like Josephine and Izzy with rare genetic disorders.

New Love of Hair Pulling

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On our way to Ohio, we stopped at McDonalds (August 2010)

We are en route to Ohio–stopped at McDonalds and thought I’d write about Josephine’s latest love…hair pulling (only on the right side). It didn’t seem like an issue until the last week and a half when the hair on the left side of her head was noticeably thicker. I would offer her my hair, but (being mostly bald) she isn’t able to get a grip:)

She seems to do this mostly when she’s frustrated–and probably not able to truly communicate her emotions. So, whenever she does it, we try to acknowledge that she’s frustrated. Not sure if this is just a phase or if it will (hopefully not) develop into a lasting habit.

Red Rover, Red Rover, Let Josephine Roll Over

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Good therapy session today! Josephine was rolling over (to the right, to the right), from her stomach to her back, then to her stomach again. She did this three or four times with much more ease (and without much effort) than she has done in the past.

Repetition, repetition, repetition. Getting her on all fours is not her most popular thing to do yet…but just wait!

Another thing I started to wonder about…She sometimes gets very excited and flails her hands and arms. It was when my son Sheldon was hanging on my back and wrestling with me that I looked up and she was doing this movement. When he got off, she stopped. Then he jumped on me again–and again she started to get excited. Then it hit me…maybe she is signing the word “play”–and she wants in on the fun. I will keep monitoring this.

Scream’n To Get Dream’n

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Okay, it’s getting close to midnight…there’s finally silence. Nope, spoke to soon…as soon as I wrote that sentence, I jinxed myself. The crying continues. I wish I understood what she needs. As Krysta wrote in her earlier post, is it the normal toddler-fighting-sleep-scream or something else. Is she on some type of sensory overload?

Not really adding anything new…just my two cents. Just wish I could understand her more to help her.

The saga continues…

Truck’n Through Ohio

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Daddy and Josephine in the pool

Daddy and Josephine in Mike and Amy's (our cousin's) pool

We recently made a trip to Ohio to see our family. What an incredible experience for Josephine. Although a week early, she celebrated  her first birthday with her Grandparents, Aunts, Uncles, and cousins–can I just tell you how touching it was to have everyone share it with her (both my family and Krysta’s)! It was a great opportunity for her to see how wonderful and caring our families are! As you can see in the picture, me and Josephine got a chance to cool off from the HOT day.

By the way, it was soooo awesome that she received the many, many birthday presents–especially some “cause and effect” toys that will help her learn! In the last few days, her face lights up any time we bring one out for her.

Our Birthday Princess!

1st Birthday Party at Aunt Patti's - chillin' with Mama.

1st Birthday Party at Aunt Patti's - chillin' with Mama.

Cake with Daddy - YUM!

Cake with Daddy - YUM!