Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words
“Sometimes not being in control is the most beautiful thing in the world.” ~unknown As I’ve fallen a little complacent in updating my blog lately I’ve had some of you wondering how things are going. Life has been busy. Crazy. And full of…well, life. With Chance going through so many medical moments this past year...
I am a social worker at a spina bifida clinic in Syracuse NY. I was wondering about the spina bifida redefined ribbon shirt. Where did you get those? I was encouraged by your blog and plan to share it in our spina bifida newsletter. Thanks for sharing.
Hey! We’re putting on an online live Q&A with Dr. Levitt from Cincinnati Children’s Hospital about fecal incontinence related to spina bifida, on February 22nd, 2012 at 7:00pm ET. If you’d like to participate in the event, you can RSVP here: http://www.eventbrite.com/event/2912706985. If you’re interested in hosting the event on your site or blog and would like some more info, please contact me, John Martin at john (at) partnershub.com. Thanks!
“Spina Bifida shouldn’t be something scary, sad, foreign, or feared as one would fear a death sentence. And yet every parent who is hears “I’m so sorry -there is something wrong – your baby has Spina Bifida” feels those things. Every pregnant mother who is left with the decision on whether or not to terminate...
by Amanda Kern
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Amanda,
In your touching and beautiful photography and honest expression of feelings, you have done so much already for increasing the awareness and beauty of this very special spina bifida community. I have no words to tell you how much it means to me, one of Chance’s privileged nurses,to see the difference you, Chance, and your family have made in such a short time. We don’t always choose what life gives us but we can make it special. “The Big Man” doesn’t waste anything! God bless you and yours always. Suzanne
Amanda–great job with the walk yesterday. I was proud to be a part of the inaugural Spina Bifida walk. It was fun, even if it was raining, maybe even more because it was raining. You should be proud of yourself. I wanted to let you know my friends that contributed: John, Denise Fisher, Jen & Brian Berry, Ana Alves, Dr. Law, Shandra Crummey. I am glad it was so sucessful. But of course the star was Chance. We all love him!
“There is a strength in vulnerability and exposing your scars to the world.” ~unknown This time last year my life was still amidst quite a bit of uncertainty, fear, and filled with overwhelming moments as we had come so close to giving up on my baby boy. It seems like many more days in the...
by Amanda Kern
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“No one else will ever know the strength of my love for you. After all, you’re the only one who knows what my heart sounds like from the inside.” ~unknown I’m finally finding the energy to post an update since Chance’s 11th surgery. The last week and a half has been beyond draining. We’re still...
by Amanda Kern
5 comments
He is a beautiful child. You all have been through so much. I pray this is the end of all the hospital craziness. Thank you for sharing your journey and his gorgeous eyes. I can’t wait to meet him in person! g
Chance is in our prayers as well as you and your family. He is a little fighter and he continues to go dady by day with a smile. He is so precious Amanda.
Contnued prayers for mister Chance!! He is one strong little guy! <3
Chance goes wireless – Y E A H !!!
Happy for you all that this surgery is now behind you! You all are an inspiration to many people in many ways! Could be this is what it is all about? Many people read about your journey and find the strength to keep fighting and moving forward. My thoughts and prayers are with all of you.
“We make a living by what we get, but we make a life by what we give.” ~Winston Churchill We’re just a few hours away from Chance’s 11th surgery. This past week I’ve had so many of you reach out to me and our family and ask “What can I do to help?” Aside from...
by Amanda Kern
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We raised $173.50 at the Food Truck Round Up with donation from both the people in attendance and some of the food trucks!
by Amanda Kern
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