This writing was sent to me by a couple wonderful ladies in my life. I have a very emotional reaction when I read it. It really hits home. Be prepared, it may make you tear up as well. Thank you to those who have thought to send it to me. =0)

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This is a story a friend of mine who has a beautiful daughter with multiple disabilities, shares with others who wonder what it's like to parent a child with disabilities. It's an amazing story that really makes you think. No child, no life should be taken for granted. The story is by Emily Perl Kingsley who writes for Sesame Street.

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 stewardess 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.
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Do I hate Cystinosis? Yep. Do I wish that Landon wasn't one of the very few in the world with this disorder? Absolutely. But Landon and Cystinosis have taught me so much. I have said this before, but I know that I would never appreciate each milestone that Landon hits in the same way that I do now. I would not know how good people are, and how many people are willing to reach out and help, pray and care about someone who they don't know very well (or at all). I would not know how strong I really am.. I would not know the extent in which I need Jimmy. He is my rock and when I feel like I am falling apart and I close myself off he can bring me right back without even knowing that he is doing it. I've learned that our families are hands on, right there and willing to do anything we need... anything that Landon needs.. I learned that our friends, neighbors and relatives will go into their own pockets to send money for the Cystinosis Research Foundation or for us to put away for Landon. They will plan fundraisers and helps us to raise awareness. So yes, I wish that Landon would eat like many others kids, and I wish that he didn't have to take medicine, I wish that he didn't have to sleep in his crib, play and watch Barney and Wiggles connected to a feeding tube and and I wish that incredible as they are that so many doctors, nurses, pharmacists didn't know us so well- but wouldn't it be a shame if we didn't experience all of this goodness and appreciation like we do?

On that note, I was thinking the other day about something I wanted to post. We are so so so blessed to have such wonderful people involved in Landon's care. His doctors are so caring, so available.. They call me back right away to answer questions or address concerns.. They are excited when he is doing well and smile as they watch him walk down the hall, carry on conversations as he speaks to them in his own language and let him play with their stethoscopes and computers. His therapists recognize when they should push him and when he needs a break. They give him so much praise and they encourage us all of the time. Our local pharmacists and the pharmacy technicians rush orders of medicine, call doctors, talk to us when we pick a prescription. They recognize me and my car when I go through the drive thru (yes, really..). The people at the medical supplies company and drug company deal with issues with insurance, mail me two weeks of supplies while they try to get authorization from the insurance company, call me back quickly, rush orders when I call a little later than I should! What would I do without so many people working so hard to make life a little bit easier for us?

We have been blessed in many ways... and Landon is an AMAZING little boy. I believe that there is a reason he is here and there is a reason that he was given to us. Our little boy is going to do big things. Just wait and see...