Dec 11

We went down to Vancouver last weekend to visit with family and for the Brunaugh's annual Bunko party. On Friday Madeline had an appt with her Naturopath, Dr Chapman. I think I mentioned earlier that we were concerned that Madeline might have "MSUD, maple syrup urine disease". MSUD is a disorder abnormally affecting the metabolism of amino acids. It basically would have meant that Madeline would have to cut back on protien. So basically she wouldn't be eating anything! Well, we got the results back and she does not have it. Hooray! I guess she's exactly the opposite. Her amino acids are really low so we will supplement now. She is also changing her multi-vitamin and adding in magnesium. Our main concerns right now are her bowels. Maybe too much info for some people but it's VERY common in children on the autism spectrum to have stomach issues. We are going to take her to a GI at UW as soon as the referral goes through. I just want to have some tests run to make sure everything is connected and working properly. We are also going to see a nuerologist. She has picked up a new stim (a repetitive body movement (often done unconsciously) that self-stimulates one or more senses in a regulated manner). This one scares me because it looks like a mini seizure. However, it seems voluntary. She does it a lot when she is excited. So, we'll go get her checked out. I"m really hoping the dr's can run their tests on the same day so that they only have to sedate her once.

We are getting ready for Christmas. We drove up into the hills and picked out our Christmas tree tonight. The house is decorated, thanks to Missy, and the lights are up. Jon and I pictured this neighborhood being crazy with Christmas decor but we are very disappointed by the lack of lights.

On a different note, ever since I started this journey with Madeline I've always said that if any of my friends ever found themselves along a similar path I would do everything in my power to share my knowledge with them. Of course, I always prayed that no one I knew would need me. Last week, one of my dearest friends gave birth to a beautiful baby boy. Shortly after he was diagnosed with Down Syndrome. While the challenges our children face will differ greatly we now share a common bond. My favorite quote, and one that gets me through many hard days is "God only gives you what he knows you can handle." I truly believe this. And I know that my friend will be an amazing mother and that her son is already one step ahead for being born into such a loving family. Another quote I love is "There will be hard times, tears, and lots of fears, but the love and joy will be so intense you will not be able to imagine your life without this child". I will do all I can for her and her family and try to be the best friend possible. I've learned a lot in the last couple years, most importantly who I can and can't count on. I'm very lucky for the great friends and family I have supporting me. I know my friend will have the same.

I also want to share an essay that was shared with me at Madeline's school and it shines a little light on the subject.

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 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.