Mixed Nuts: Why Lebers Congenital Amaurosis sucks

Quotes

"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." - Helen Keller
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
You may never know how strong you are, until being strong is your only choice.- Unknown
Keep your face to the sunshine and you cannot see a shadow' ~Helen Keller
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
Don't cry because it's over, smile because it happened."- Dr. Seuss
"Life is 10% what happens to you, and 90% how you react to it."
"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown
I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go – Abraham Lincoln
Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin
There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle - Albert Einstein
The journey of a 1000 miles starts with a single step
Sometimes in the middle of an ordinary life, love gives you a fairy tale
Where there is great love, there are always miracles - Willa Cather
The Difficult we can do immediately, the impossible takes a little longer
Doing what you like is freedom. Liking what you do is happiness
There are two lasting bequests we can give our children. One is roots. The other is wings.
Be the change you want to see in the world
Don't tell God how big the storm is, tell the storm how big Your God is..........
Everything has beauty, but not everyone sees it
Fall down seven times - get up eight - unknown
Despite our differences, we sink or swim together
Life may not be the party we expected, but while we are here, we might as well dance
"The man who moves a mountain begins by carrying away small stones." -Confucius

Monday, October 20, 2014

Why Lebers Congenital Amaurosis sucks

When Mat goes away on business trips overnight, one of my kids asks to sleep in bed with me. They look at this as a fun sleepover with mom and I don't mind the company.

Usually it is my oldest, Arlington, who stays because she gets up very early for school, and I don't want her disturbing the little ones. But last night - after much begging - Finley won out. She was excited to have a chance to sleep in the big bed, so she quickly got her favorite stuffed animal and her books, and settled in.

When I finally came to bed about 11pm last night, I had a chance to watch her as she slept. Since I cannot turn the TV on when the kids are with me, my mind started to wonder. With no distractions, I started to think about her future. We have been working so hard to save her sight, and yet, the end of the tunnel still seems so far away. The mountain we now have to climb to make it to the end seems huge. How are we EVER going to raise a million dollars in a year so that our kids don't lose any more vision?

Last night, before bed, I had a chance to talk to one of our families in our group. He has a daughter who is 14. He told me last night that she has completely lost her vision in her right eye. This fact also came back to me as I was lost in thought. We are running out of time for his daughter to save her remaining vision. She is only 6 years older than Finley. IS that all the time we have left until her vision is all gone?

There are nights like this that come more often now that we are getting close to clinical trials. The cure might be ready, but the money won't be there. That is our biggest fear. After 4 years of rock star fundraising and amazing support, it still isn't enough to get us to our goal.

These moments of panic are brief, and by morning I had a renewed sense of strength. What other choice to we have? We have to push onward to the finish line.

No one lies down and does nothing for their child. We will save Finley's sight. And all the other kids who have LCA RDH12. We will. We just need a lot of help.

Join us now. Go to www.1foramillion.com and help us cross the finish line. Please don't make us wait.

1 comment:

Anonymous said...: yes, that is a hard struggle to deal with I have faith that the impossible will come a reality for Finley and the other kids :)

again... I am sending money!!
God bless!!; October 20, 2014 at 5:23 PM