Author Archives: Amanda Kern

The public school system reminded us of their own disability

Nearly six years ago we learned our son would be born with spina bifida. One of our biggest fears had come true – we would have a child who was considered by society as “disabled”. So many fears we once had have come true. But Chance continues to remind us – his disability won’t hold […]

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June 1, 2016 - 6:38 pm

Mary Sproles Martin - Amanda,

Joseph went through public schools here in Waynesboro. He had an IEP and went to the nurse’s bathroom to cath and deal with colostomy issues. He was in a wheelchair as well and the teachers knew he was to be allowed to go to the nurse whenever he needed. He also had access to water at all times.

If I can help, call or email me.

I get it.

June 1, 2016 - 6:40 pm

CT_Mom on BabyCenter - Oh, Amanda, I am so sorry. I had to fight a smaller fight to get April into public pre-school, and that was hard enough! (her issue was that they claimed a lift-equipped bus couldn’t drive on a city road to reach our driveway. But every other vehicle somehow managed it? And there were battles from/with/over the school nurse to the point that she no longer works in April’s school. At all.)

One tip to pass along: I’ve found it is VERY helpful to have April in the room with me during all meetings. It keeps the adults from the school on their better behavior, and for those who don’t know her already, they can see with their own eyes how normal she is, despite the volume of medical information that comes with her.

Contact your representatives. Local level. State level. Federal level. It helps. It really, truly helps, if you can get their offices working on your side. Those other districts around you didn’t just magically decide to be supportive. Having someone bigger and stronger roaring on your behalf can help, especially with schools.

August 15, 2016 - 3:52 pm

Jennifer Wray - As someone who grew up with disabilities, I can totally relate. I was born with several medical issues and it was a fight for my mom to get me into a normal public school…just because I’m physically different doesn’t mean I’m intellectually any less capable than a “normal” student. We finally got me enrolled, and the fight still wasn’t over. The school tried to tell my mom she should take me out of school, and gave her info for schools that can “meet the needs” of a disabled child. Thank God my mom did not take that as an answer and fought ’till the end for me. Sure, school was a little more difficult for me…I missed a lot due to my doctors appointments and surgeries. And sometimes the school had to make special accomidations for me. But I graduated on time with a good GPA and now I’m in college doing just fine. Your son sounds like a fighter and like a strong little boy! Keep it up because you’re doing something right. Never let him lose his spirit. It won’t be easy, but It’ll be worth it! Good luck with everything!

June 2, 2018 - 4:34 pm

Leah - Oh god.

I’m nervous about this for multiple reasons. I am both excited and nervous about the day that Logan will start school for the first time in a few years time. When I have to attend such meetings I plan on having him present for them in the room as well as his twin sister. Also I will have to get the contact information for my state and local representative just in case I need it. Hopefully I’ll be listened to and rightfully respected as a valuable member of the IEP team. This is the only part of being a SB mom which I detest wholly.


Help me support Redefining Spina Bifida + a photo session giveaway!

“It’s not how much we give but how much love we put into giving” ~Mother Teresa So here’s the deal….it’s GIVING TUESDAY, right…and I can’t let the day pass me by without “giving” – but an even more amazing thing would be encouraging others to help me give. I’m giving away an opportunity to win […]

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An update as we await surgery #14

My dearest Chance, You are still so young and I’m not sure you’ll fully understand the news we will have to prepare you for – but it only seems appropriate to express my heart as we must now also share this news with our family and friends and the many people who have come to […]

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November 14, 2015 - 12:18 am

Deb Heming - He is so brave and strong and such a cutie. He is also blessed with very loving parents. We will pray for God’s wisdom for the surgeons & for a good outcome. Blessings, Deb Heming (Chris’ mom)

November 14, 2015 - 2:20 pm

Cynthia Downey - I knew you were talking to my sister Marilyn about this tethered cord issue, another battle for this little guy. He is so brave and hopefully, this will be the right surgery to conquer the battle of the headaches and nausea. Our thoughts and prayers are with you during this time.

November 15, 2015 - 11:01 pm

Amanda Saulter - Chance is such an inspiration. He will get through this surgery and continue to bless us all with that amazing smile. We’ll be thinking of you all during this time and pray for optimal results. Much Love, Amanda & Jaxon

November 23, 2015 - 9:27 am

Elizabeth Eminisor - We will be saying prayers for Chance.

Why my child doesn’t suffer from spina bifida

Recently the media shared a story of the Pope blessing a teenager with spina bifida. Seeing the gesture was touching but a short time later when shared by the media I was saddened to see the headlines read, “Touching moment Pope Francis blesses girl, 17, in a wheelchair who is suffering from spina bifida and […]

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October 22, 2015 - 11:41 am

Taryn Kim Westover - Thank you so much for this post! I too am living with Spina Bifida.
I was born with it in 1955 back when doctors didn’t know much about it at all. I had surgery to close up my spine when I was 5 days old. The doctors didn’t talk about the challenges we would face because they didn’t expect me to live. The only encouragement they gave my parents was that at the most I MIGHT live to see my 18th birthday.
Well, the Lord Willing, 12 days from now I will celebrate my 60th birthday AND what I call my 42 year miracle. I have lived 42 years longer than the doctors said I would.
I also have only had the one surgery at 5 days old. All other surgeries I have had have not been related to the Spina Bifida.
I get around in a motorized wheelchair and have had the blessing and privilege of traveling more places and seeing more things than most people on two good legs!
My main challenge is people who don’t understand my capabilities and who don’t understand disabled people and what they need in the way of accommodations/accessibility.
Thank you again for this post!

October 22, 2015 - 11:53 pm

Melissa Cork - Best article ever. I’m 32 years old (from Australia). I always cringe when people think you ‘suffer’ from Spina Bifida. People always want to feel sorry for you. But why? We are who we are. Well done a great article. Thank you for sharing your story.

October 26, 2015 - 11:56 pm

Kristy - I love your attitude. My son has a couple of medical conditions and I think it is so important to share photos and information so everyone can better understand that life is not your diagnosis.

October 30, 2015 - 8:35 pm

Rudy Bazan - Una de mis mellizas vive con espina bífida, es increíble su fortaleza, nos transmite su alegría por la vida. Acaban de cumplir su primer año de vida.

November 23, 2015 - 4:07 pm

Juan Esteban Salas - A great inspirational site! Not just for the amazing photos , but also for the spirit within your words! Your story is an example of what living with spina bifida must be, both for the people with the condition and their families.

I’m a pediatric neurosurgeon who treats fetal and neonatal patients with spina bifida in Colombia, and let me tell you this: you taught me something that can’t be learned from a medical book, and from now, my patients will never “suffer” from spina bifida. THANK YOU!

June 2, 2018 - 4:51 pm

Leah - My son and daughter are going to be 4 in December. Both of them are going to start school for the first time September of 2019. I’m nervous and excited at the same time. We are going to the first meeting next week to discuss his disability and what he is predicted to need as well. I have fully prepared for the meeting by conducting research online and talking to other parents of SB children. From that I have sat down at my computer and typed up a list of questions to ask at the meeting. I also emailed everyone a copy of my list of questions and printed out a copy just in case.

What other questions should I ask at the meeting? If I think of any other questions I will add it to my list of questions to ask at the meeting.

May 7, 2020 - 7:52 am

2015 Spina Bifida Awareness Campaign

“Hardship often prepares an ordinary person for an extraordinary destiny.” ~C.S. Lewis Just over five years ago we learned our son Chance would be born with spina bifida. We were told then that he would be born with complications that would require a lifetime of care – and that so much would be unknown until […]

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October 8, 2015 - 3:14 am

Deborah Paul - You have outdone yourself again!
The banners are beautiful and truly from the heart!

October 10, 2015 - 4:52 pm

Brandi Harris - I have 13 year old twins girls, one of them was born with Spina Bifida. The doctors tried to persuade us to cut off her life line due to her birth defects, she wouldn’t be able to do much. God gave us these special girls for a reason. We absolutely can’t imagine our life without her. She is such. Blessing to everyone e she meets with her huge smile and loving personality.

October 21, 2015 - 12:24 am

Marcia Walker - Please send me the link to donate.

June 2, 2020 - 12:29 pm - Why do some people have good lives and others don’t? I am a realist so I don’t believe in any supernatural stuff and I don’t have confidence in any religious beliefs.
You could call me a hardcore Atheist/Skeptic.
What I sometimes wonder is the reason why do certain folks have
it so excellent in life while others don’t? The only realistic description I could think of is
normally: 1. Random Luck (lucky… show more A few of it is
circumstances of birth and host to birth other is free will and what you perform to overcome any handicaps you may have been born with.
Appear at Hawkins who was simply stricken with a horrible
disease but became an excellent impact on the 20th hundred years thinking and in to
the 21st C and FDR who was struck down with polio but continued to become a great president and player on the
globe stage.

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