The Courage to Share

In the early days of Kai’s diagnosis I scoured the web for blogs written by sighted parents of kids who were losing their vision. I could not find any.  Sure, I could find advocacy and awareness web sites and consumer groups, but I craved emotional honesty from another mom. I wanted to read her feelings, understand her struggles, and celebrate her wins. I wanted to know her feelings about her child’s inclusion (or lack thereof) and understand the anger and frustration behind her educational accessibility battles. And, most importantly, I wanted to know what it felt like to be on the other side: to have raised a child who became a strong self-advocate, who is highly-educated and employed. I wanted to know my child could beat the grim statistics. Now, 7 years later, I have found 6 moms (+ me) who are blogging about their experiences and I am so excited to share them with you!

Each of these blogs is written by a sighted mom of a blind or VI child(ren). Our kids range in age from 1-20, they have different diagnoses, and our philosophies, cultures, and religious backgrounds vary, but what we all have in common is the courage to share.

(Blogs are listed by the child’s age: oldest to youngest. Bloggers with older children have received consent from their child to share bits and pieces of their lives.)


Kristin, Michael (20) & Mitchell (16)

If I could learn to SEE that having two blind children is NOT a big problem, then I can help you look at your challenge differently to come out on the other side with a smile as big as mine.  Sound crazy?  Yep, nineteen years ago I would have said *crazy* as well.  However, my journey in raising blind children has taught me to look at things differently – and if you follow along on my journey, you’ll see it’s been quite remarkable.

It all begins with perception.  How are you seeing your challenges?  The way you look at it directly impacts what you are expecting to happen… and usually what you expect is what you get!

Blog:  http://kristinsmedley.com/2019/09/is-your-child-climbing-their-mountain-or-yours/

More info: Instagram   Facebook   Book   TedX

 


Melissa & Sam (13)

My son Sam was in an accident when he was nine and developed a pseudotumor which led to vision loss. He is low vision – sees as well as you can while still technically being legally blind. I’ve been blogging for more than 10 years, so the blog covers the accident, recovery, homeschooling, disastrous re-entry to brick and mortar school and his attendance at on-line public school.

Blog: https://www.melissaannecohen.com/he-cant-see/?fbclid=IwAR0i8EbgFxCzxLlhH7gnauIZybeGlx0sAi7eUw_5As296_SAlfz-yxLUtZY

Melissa is also a contributor to Kveller.com: https://www.kveller.com/what-its-like-to-suddenly-have-a-special-needs-child/?fbclid=IwAR2Kd65ZPMKYFS7kuXhA7OnFkPe1SSfogkq7A640k4VlB1psdJzlMm04ueg

More info: Facebook


Stacy & Gabriel (12)

My blog, Beyond the Darkness, is a candid account of how I learned to deal with my son’s affliction. I share some of our experiences and offer practical (though not professional) advice on dealing with some of the challenges that arise, raising a blind child.

Gabriel is 12 years old and lost his vision due to Retinopathy of Prematurity and complications from glaucoma. He also had bilateral congenital cataracts (his poor little, eyes never stood a chance.) He was born with minimal light perception and lost all of his vision by the time he was five. Now he wears double prosthetic lenses.

Blog: http://beyondthedarknes.blogspot.com/2013/05/some-simple-steps-to-raising-happy.html?m=1

More info: Instagram


Tarsha & 2 young boys with Albinism

I am a Mother of two curious, active, hysterical young boys who just so happen to have albinism and sensory processing disorder so I am also their researcher, advocate, and behavioral therapist. I am the wife of an amazing man who is fiercely dedicated to his family. He is a man who makes it his business to bring joy to the lives of the people he loves. He’s my backbone. I am a lifelong learner. I am also an educator.  I have been a tutor, a classroom teacher, a teacher coach, and an assistant principal. I am a parent advocate devoted to helping parents gain access to services, therapies, programs and tools that their children need and deserve.

If you were to strip it all away, every single label, what would you be left with? Who are you? What do you want for your life? 

Blog: https://findyourmagic.org/2020/01/ 

More info: Instagram


Alison & Finn (2 1/2)

My blog is about my journey through learning about my son’s lack of vision shortly after his birth, to accepting what I thought was a loss, but learned is actually a gift and what makes my son exactly who he is meant to be, to the day to day triumphs and challenges that come with raising a blind child (currently a toddler). I plan to continue documenting our journey to help other parents out there facing similar journeys in raising a child with a lack of, or loss of vision.

More info: Instagram

Melissa & Timothy (13 months)

My blog Happiness is Blind is an account of my experiences with receiving a blindness diagnosis for my infant son. I always aim to share openly and honestly about the ups and downs of raising a child with visual impairment/blindness. Empowerment, advocacy, and connection are my main motivations for sharing our journey.
My son Timothy is 13 months old. He has a genetic condition called Leber Congenital Amaurosis affecting gene CRB1.
More info: Facebook    Instagram

couragetoshare
Collage of 7 pictures: 1 of each mom-blogger and her child or family.  

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