I quickly had to gain the strength and courage to understand Angelina’s diagnosis and manage it, while balancing the emotions of our three other children.  I had to take Giant steps in getting Angelina all the help that she needed and deserved.  I strongly believe in early intervention and intensive therapy.  There is no time to wait.  What happens today may have a direct impact on the rest of her life.  We have no idea about the challenges Angelina will face. Will we be left guessing if she’s hungry, thirsty scared or just frustrated?  Do not accept a waiting list.  I continually try to reach-out, research and press forward on behalf of my innocent, but unfortunate, daughter.  Remember 1 of 600 in the WORLD!  She hit the lottery in reverse.  It is not easy, but through the grace of God and love for my Angelina and the other children, I do it.

Initially, I had to take baby steps.  There is no “blue-print” for such a rare condition.  I can not change what Angelina has, I can not fix it – IT IS WHAT IT IS.

What I can do is make Angelina be the best that she can be.  I can also strive to raise my 3 other children to be compassionate, strong and accept people for who they are, looking for the good in every situation of life.  It is full of surprises, both good and bad.

No parent should ever hear what we were told.  The initial genetic team repeatedly said “Go home and grieve, you lost your perfect child.”

I am turning that grieve into motivation to help my child as well as other disabled children.  Through love, faith and hope, I believe that anything is possible.

God has given me the much needed Grace, Strength and Comfort through my child’s disability.  Through time, I hope to gain peace and joy, even though circumstances in our life do not make sense causing our world to turn upside down.

These are some of my favorite quotes, stories and scriptures I have read which give me hope, comfort and strength during tough times.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

By Emily Perl Kingsley

God does not seek out our capabilities to serve him, He seeks out our AVAILABILITY.