Guest Blogger - Hanna's Story

Today I am happy to share Hanna's Story with you. She is a bit of a mystery child like my Tommy. She has several unique characteristics, but they don't add up to anything other than spunky little girl that has the experts stumped. Read below to learn more about Hanna.

Tell us a little bit about your family and your child:

Matt and I got married when we were 20 years old, and knew that we wanted babies right away. Today we have three beautiful little girls. Gracie, who is five, Hanna, three, and Hailey is just over one. We have a dog, Koda, who is also a female, and a bunny, Fluffy, who, yes, you guessed it. Is also female. Matt is definitely out-numbered. 

When Hanna was born I noticed unusual movement of her eyes. As time went by it worried me more because she never seemed to focus, or even look at me. We brought her into an optometrist to have a look, and then that quickly turned into an ophthalmologist, and then specialist after specialist at Sick Kids Hospital in Toronto. She was diagnosed as microcephalic, with a triphalangeal thumb, heart VSD's and legally blind. She has no diagnosis, but has proved all doctors wrong in every way. They call her a mystery. 

Name your child's five favorite things: 

Two little dancers!

• She LOVES LIGHTS!
• music
• singing
• dancing
• marshmallows.

Any new milestones you want to brag about? (Big or small, they all count.) Well, most recently Hanna has learned her letters. She brings them right up to her face to see them, but she sees them. Most of them. She can't differentiate between a Q and an O, or a U and a V. She also can count past 10 all on her own, and she has no problems with tactile differences now! That was always a huge problem for us. She also just mastered the rock wall on our play center in the yard which she has been too nervous to even try. 

What is your favorite local resource:  CNIB. They have supplied me with so much reading material and contacts. They have been so useful and helpful in every single way.

What is your favorite web resource:  Other blogs. I learn so much from other parents. I love seeing their experiences and the different things that work for their child. Everyone's case is so different, but we all have so much in common at the same time. Trying to teach a blind or visually impaired child is extremely hard work, and doing it together with support is so important!

What has therapy (Early Intervention, school, or private) been like for your child?

We've been extremely lucky and blessed that we haven't needed any PT or ST for Hanna. She is doing extremely well with every goal we give her. We have an awesome worker who comes out from CNIB to see her and she makes our early intervention activities fun. Right now we're mostly working on her fine motor skills to train her for Braille. Her thumbs make certain things harder as well, so she's significantly behind in the fine motor department. 

What do you wish people understood about your child?

That she is just like every other typical child. She is very small, and doesn't see well. She needs extra help with some things, but she is happy and healthy! 

Can you think of one thing that really improved your life that you want to share with other parents? (For example: I wish we would have started melatonin much earlier! Tom never slept before, and with Melatonin, he does.)

I think one thing that really helped Hanna to use every bit of the vision she has is that we really stimulated her as an infant. She has always been completely intrigued with lights, so we made sure she had every light up toy, and never let her miss any interesting visual stimuli. I think that's why she does so well with her vision now.  

There isn't one doctor who has looked into her eyes and hasn't been so surprised at what she seems to see. Her eyes are such a mess inside, but what she manages to let through is nothing short of amazing. If your child does have limited vision I think making sure that your child is even trying to use it can make a big difference. If Hanna had no usable vision, the best thing that I can say that has helped us is the constant tactile exposure. Being able to explore different materials and textures has made life a whole lot easier, and more interesting for her!  

What advice would you give to new parents of blind children?

Never limit your child. No doctor can tell you what your child will be capable of, or do, and being blind will not stop them! Hanna is doing dance this Fall, and we couldn't be more proud! We were told when she was ten weeks old that she wouldn't have light perception. If we would've accepted that as her prognosis, maybe we wouldn't be pushing her like we've been. You know your child. You know what they need. Don't let anyone sway you in any other direction than you feel is the right one.

Anything else you want to say?

When Hanna was diagnosed as blind my world felt like it was crumbling around me. When she had further testing, that confirmed a heart condition and even further testing for potential brain abnormalities, her eyesight seemed pretty easy. Having a child that is medically complex can feel devastating at first. No question about it.  But count your blessings. 

Hanna has taught me not to take anything for granted. Having Hanna has showed me that we can all move mountains if we want to, and the sky is the limit. 

You can follow Hanna and her two sisters on their blog - My Little Rays of Sunshine! And I so agree that the best thing a blind child can have is parents who work hard to treat them like any other child.