Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words
“…And if not now, when?” ~R. Hillel It’s been a little while since I updated my blog. I’ve been busy with quite a few things. Rather than reflecting on my busy moments (which I’m sure I’ll do soon) today is a little day that I felt it’s necessary to jot down a few thoughts after...
It sounds like both of our kids have gotten denied by Cigna… My April, who’s a month younger than Chance but with same lesion level, isn’t strong enough yet even for a walker. We ordered a dynamic stander for her back in November, to help build her core strength, teach her proper standing position, and give her the mobility that she craves. It’s about a $2,000 piece of equipment, but with it, we may be able to avoid the series of orthopedic surgeries that she is potentially facing, which will cost Cigna WAY more than $2,000. And even at $2,000, it’s much cheaper than the wheelchair which would be the next step if she cannot get the mobility that a dynamic stander would provide.
Last week (nearly 2 months after ordering), Cigna denied the application. And we cannot even appeal it, because the reason for the denial is “your policy doesn’t cover standers.” Period. End of story. Even though my union’s contract says that our benefits must cover 100% of durable medical equipment. Unlimited amount. Of course, it’s taken hours of phone calls even to get the reason out of them…
Oh, and when calling Cigna, as early as you can, start saying “Customer Service.” You get to a human faster that way (under 5 minutes each time)…
Your website is beautiful. Thank you for sharing this difficult story. The word needs to get out whenever any insurance behaves this way. The faces and families behind the “applications” need to be heard.
“Believe you can and you’re halfway there.” ~Theodore Roosevelt I’m so excited to finally get to share a few moments from Chance’s physical therapy at Arnold Palmer Hospital. He’s been going through therapy one day a week since the beginning of last December and it’s been torture for me to take him and not be...
by Amanda Kern
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“You can make plans, but the Lord’s purpose will always prevail.” ~Proverbs 19:21 I know I have quite a few people anxious to see some of what I’ve been working on for part of the last month and a half. I’m quite excited to finally share the entire 2012 spina bifida awareness campaign that I’ve...
by Amanda Kern
11 comments
God bless you Amanda Kern for illustrating so beautifully that these children and adults are not defined by a diagnosis. I am so grateful that you are so transparent in the words you use to describe your journey. I choke up looking at the photos as I know so many of these incredible individuals and know many challenges they’ve endured. Thank you for using your incredible talents to educate, help and bring joy to so many.
What a beautiful collection!
Thank you for the inspiration.
Amanda,
You have been so blessed with your gift of photography and now you are blessing so many others. Your ability to see and capture the essence of each person through the camera’s lens is truly amazing. Thank you for opening everyone’s eyes to the beauty of each individual, created and wonderfully made by God. You bring love, joy and such a sense of purpose and hope to us all. May you find inner peace knowing you are a treasured instrument of healing and love in this world. Thank you.
Wow! Amanda!! This truly takes my breath away!!! Thank you so much for all of the time and effort you put into these campaigns!
Amanda, your journey and illustrating is inspiring, beautiful, and emotional. I have not let Spina Bifida define me.
Thank You
Amanda, thank you for sharing your beautiful, emotional and inspiring journey. We will not let Spina Bifida define us, we will define it with the help from people like you and those around us. knowledge is the key, it can open many doors.
Wow! This is amazing! I am 41 with SB! Thank you for sharing! This should show awareness to the world!
Wow, this is absolutely beautiful. You have captured the essence of how small a part of a life Spina Bifida is as represented by the small(ish) scar on the babies back, to me anyway. This mark, to me represents that Spina Bifida is not this huge all encompassing diagnosis of gloom and doom the medical profession try to make it out to be. The scar on the lower back is a unique stamp of belonging, to an amazing group of people, who are connected to a larger courageous, fun and happy family. Thankyou
I love it! My daughter has Spina Bifida. I wish we had a better campaign here in West Michigan.
Dearest Amanda,
There is no doubt that God’s purpose is strong in this campaign. My sister, Suzanne McKee, shared this with me. As a neonatal nurse I have taken care of many children with spina bifida. I have no doubt that you had divine inspiration from the moment you received Chance’s diagnosis and listened to your heart (God’s voice)in developing this campaign. I ditto what my sister said in her previous comment….God bless you for using your talents in such a way. I will share this with others, with sincere thanks!
Thank you so much…your love and purpose shines so brightly. An inspiration to everyone.
“You never know how strong you are until being strong is the only choice you have.” ~anonymous Times have been busy and I’m anxious to share a lot of new work in the week ahead. With it being spina bifida awareness month, I prolonged sharing my favorite photos from Yadiel’s session so that you all...
by Amanda Kern
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“She not only saw a light at the end of the tunnel, she became that light for others.” ~ kobi yamada If you mention “D-day” to most the thoughts of troops storming the beaches of Normandy might enter their minds. But if you ask most parents of a child with spina bifida they likely will...
by Amanda Kern
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such a strong and handsome fella <3
You’re right, D day means something entirely different to some of us. I can not only tell you the date, but all the details of the days Justin was diagnosed with Type one diabetes and then Epilepsy. I will never forget. Both broke my heart.
Chance has to have the sweetest face ever and I am so glad his story has been able to reach others. I’m sure you know how it feels to find someone who understands and those families are blessed that you are willing share your families journey with them.
I look forward to seeing what he can do next year… He is truly an amazing young man.
I just received results for my screening and it came back positive for NTD greater than 1 in 10 chance. I came across your blog and have read every post since I can’t seem to sleep tonight:/ I just want to say thank you from the bottom of my heart for your blog and you sharing every moment. I go to the maternal fetal medicine for a level 2 ultrasound. But I’m going to walk in the office so much more educated and optimistic. Thank you again.
by Amanda Kern
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