Tuesday, April 6, 2010


(I don't know why the font size in this post is so huge... I cannot make it smaller for some reason... Blogger is being difficult. :-)

I am writing this after midnight, so actually it will be tomorrow morning... :-)

Off to bed soon, but want to tell you what a cool opportunity we have tomorrow.

Long story short, about 1-2 months ago a family from Louisville, KY got in touch with us because their 3 month old baby girl was diagnosed with the condition that Hannah was born with. This is such a RARE disease, that I don't know ANYONE with Hannah's condition. The eye disease that Hannah was born with is known as FEVR (Familial Exudative Vitreoretinopathy).

To make it easy to understand, lets break it up...

Familial - This means that it runs in the "family" (i.e. a genetic disease)

Exudative - Refers to the whitish fluid exuded from abnormal blood vessels.

Vitreo - Refers to a disease of the vitreous humor, the transparent gel like substance filling the eye.

Retinopathy - Refers to abnormal changes in the blood vessels of the eye which feed the retina. The retina is the thin layer in the back of the eye which changes light into electrical signals which are then sent to the brain and decoded, giving us an image when we open our eye(s).

There is only one sight that I know that is really dedicated to FEVR: That is how rare it is. So, the sister of the mom found this sight and found this post that I wrote years ago.


I am not sure who this message will reach, but I hope that it is an encouragement to all of you. I had a normal pregnancy and great delivery.

Hannah was born a healthy 9lbs. 2oz. The day after she was born, they told us that she might have congenital cataracts; bilaterally. We went down to Riley Children's Hospital in Indianapolis when she was three days old. We were then told that she either had FEVR or Coat's Disease. Her Retinas were totally detached bilaterally. At 3 weeks old we flew to Duke University to see Dr. Cynthia Toth. We were hoping to have her retinas reattached. Dr.

Toth said that even if she did the most perfect surgery, she was not sure that it would give her any sight, because her retinas were not fully developed. We were told to go home and start raising her like any other child. Since Hannah was our first, we did not know any different anyway.

God gave me a promise in that hospital: "Even though Hannah is blind, her body is totally healthy! Nothing is wrong with her, she is not going to die." Those words have always brought me a peace of mind. We also went out to Philadelphia when Hannah was six months old to see Dr. Tazman at the Will's Eye Institute. He too, said that there was nothing that they could do for her vision, but that her eyes looked stable. I told you all of that, to tell you where we are today.

Hannah is diagnosed with FEVR, but they are not 100% sure that is what she has. Regardless of her diagnosis, she is 100% blind. She is now 4 yrs. old and doing awesome. This is her second year of pre-school, and she can recognize 1/2 of the alphabet in Braille. She is very independent, and loves life. I will not lie; raising a child with a vision loss requires a lot of time and patience. But, the reward of your hard work is watching your child blossom. Hannah loves to swim and play at the park, and she loves amusement parks. The more thrilling the ride the better.

If you are parent of a child losing their sight, I know that it must be frightening. But, be so thankful for the time that your child got to see.

Being a parent of a totally blind child since birth; teaching her things would have been so much easier if she had had some sight. You would not believe how a little sight can help in mobility and orientation. Be thankful that your child got to "see" who you are. So many times we focus on the negatives going on around us, and we forget to treasure what they still have. Sight, for any amount of time, is a gift from God! I wish that Hannah could see, but she does not know any different. I have to remind myself that we can not feel sorry for her, because that will only handicap her.

Someone once asked a blind girl if she wished she could see. Her response has always stuck with me. She said, "The only reason I wish that I could see, is so that my mom would not be sad anymore." What a lesson that is for us as parents of blind children!!!! We need to empower our children, and not handicap them with pity. If you have ever stayed at a Ronald McDonald House, or been in the Hospital with your child: you know that our children are the lucky ones!!! They will be living a totally happy and fulfilled life.

A great book to read is : "If you could see what I hear" by: Tim Sullivan

What an uplifting story he has. I saw him on Oprah when Hannah was just a baby.

Do everything with your visually impaired child, that you do with every other sighted child. We took Hannah snow skiing for her 4th birthday and she loved it!!!!!!!!!!! There is a great place in Michigan called Challenge Mountain, and they teach any person with any dissability to ski--for free.

I hope that I have encouraged someone today, or even gave you a new perspective on things. It is not always easy, but God will never give you more than you can handle. Phillipians 4:13 reads: "I can do all things through Christ who strengthens me."

Have a great day, and I would love to keep in contact-

Rebekah Hubley--Hannah's mom

Well, to say all of this: We are meeting the Talbott family tomorrow. Pray that it is an encouraging day for them to meet Hannah and realize that their little girl will too be doing amazing things, even without sight. I am so excited that God is giving us this opportunity to encourage another family. I would have loved to meet a little girl when Hannah was a baby. It was very lonely and isolating sometimes being the only person around raising a child that was blind.

I hope to have a lot of pics of the kids at the museum and lots of stories and a new friendship.


Anonymous said...

i'll be thinking of you all and hoping it is a great experience.
have fun!

One Crowded House said...

wow- how cool is all of this... I know you will be an encouragement to this family.... Hannah is an amazing girl.

Gwen said...

What an awesome opportunity! Keeping you guys in my prayers as you all meet!