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 she, 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
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