a real quick update…

We spoke with Ms. Kim, our new genetic counselor at Children’s in Chicago. She is great. Basically, our next step will be to meet with her and Dr. Burton to discuss next steps Friday at 1:30 in the city. Sounds like we will be discussing genistein, baseline testing, and a few other things…(MPS moms…anything else we should be asking at this visit?)

Since this all started, people are coming out of the woodwork, so to speak, following our blog. I think I may be getting a bit overwhelmed….in a good way… about how many people are reading my words. I have to say, any encouragement you receive isn’t from me. It really is from God’s blessing on me to have this attitude. It really doesn’t make any other sense.

I am starting to feel the flooding of information. I know that it’s a good thing…but sorting through all the links, articles, advice, suggestions, stories, e-mails, cards….all while looking at my kids and still seeing “healthy” written on them is weird. Don’t get me wrong, I am completely OK with talking about it, reading about it, and the support. Just a lot to sort through.

Don’t forget about the Halloween Party Saturday the 31. After thinking about it, we probably don’t want to bob for apples during flu season….but it will still be a HOOT of a party! There will even be a SPECIAL guest for you to get your picture taken with!

Can I be so bold to make a suggestion? Think of someone in your life that you just adore. Got their picture in your mind? Good. Could you just take one moment to think of why you adore them? Now, picture not having that person here on earth tomorrow. Knowing they may be gone tomorrow, let that person know how and why you love them so much today! It’s a new thing we have begun appreciate.

One last thing, this has been floating around our home from many different people and thought I would share if you haven’t seen this already.

WELCOME TO HOLLAND by Emily Perl Kingsley

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 who 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 being 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 for some time, the pain of that will never go away…because the loss of that dream is a 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.

Lots of love!

2 thoughts on “a real quick update…

  1. I read this on a ink to another families blog with MPSIIIA and thought yep that is how life is sometimes and then thinking of Joe saying in the background…You're not much if you're not DUTCH. Him being Dutch would say Holland is great! But whatever country you guys are in we are there praying for you always! As far as the crayon…its all part of this thing we call “motherhood”. Hang in there God is riding this roller coaster right next to you~


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