A hero to many, Jules can bring a smile to your face unlike any other. We have been so lucky to have met with Jules' mother and grandmother on various occasions, however her grandmother, Suzanne attended the 2010 and 2011 Shaken Baby Syndrome Candlelight Vigil held by the Shaken Baby Syndrome Support Network.
Our Family Spotlights are so very important to us, each and every single one we share with you, and this month, we were able to catch up with Suzanne, and catch up on a very heartfelt subject. How their life is today, and how they are coping.
The most influential thing that has been learned by this family through this journey is that things are not always as they appear. From the betrayal of finding out the someone you trusted abused your child, to discovering the friends who rally by your side and the friends who flee your side, to learning what caring for a special needs child is all about, you realize that you cannot always judge a book by its cover. This family has learned a lot about patience, compassion, and working through disappointment. They have also learned that there really are some things that matter in life, and some things that do not matter AT ALL. Every priority changes after a tragedy of this magnitude. Today, their family isn’t worried about having the nicest things, living in the best neighborhood, or creating an environment of perfection. In fact, their daily routine of medications, therapies, seizures, and tube feeds make their home anything but normal. Their home environment will never again be ordinary, but there is plenty of love in their home. They would trade ordinary for love any day. Miss Julsie is the center of their lives, and, if you let her in and get to know her, you cannot help but be impacted by her love and strength.
You can never prepare for the trials and tribulations that come with caring for a special needs child. Each day is a struggle to balance remembering Juliana for the little girl she was born to be, and accepting her for who she is today. Juliana is as perfect as she was the day she was born, but she wasn’t supposed to have to live her life in a broken body. Her abuser stole so much from her innocent life. In many ways, your heart cannot help but break every time you look at Jules. However, Juliana is also the one person who brings healing power to their family. Juliana lives life as though no one has ever harmed her. She is happy, sweet, and positive. When you watch Juliana overcome her daily struggles with such happiness and joy, you have to have the same attitude. She inspires their family to “deal” with the cards they have been dealt. If Juliana can do this with a smile on her face, we all certainly can.
There is one big dream set out for Jules by her family. The things that are simple to most parents become huge dreams for families with children like Jules. They dream of Juliana being able to see the world around her; to be able to recognize colors, scenery and faces; of being able to take just one step; to be able to enjoy a meal that is not fed to her through a g-tube; to be able to say the word “kitty” again. These are huge dreams for their family.
With so many changes, so quickly, they, as a family have bonded together on this journey. A lot of occupational, physical, and speech therapy! Suzanne spends 100% of her day caring for Juliana. Jules cannot hold her head up on her own, she cannot eat, and she is blind. She requires 24 hour a day medical care. There is also a lot of advocacy work that is being done to educate other parents about the potential results of child abuse.
From the bottom of our hearts, we Thank You for sharing your story, not only with us, but with everyone who continues to support our website, our blog, and our firm to ensure the education and awareness of even what some know as simple day to day life instances, are not that for others.
Thank you from all of us at the Keane Law Firm!
If you have any questions or concerns about what can be done to help babies who have been shaken, or families of babies who have died, please call Christopher Keane and The Keane Law Firm toll-free for free consultation at (888) 592-5437 (KIDS), click on contact us here, or use the web form provided at http://www.keanelaw.com
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