Hi! My name is Austin. I celebrated my first birthday on June 17, 2006. I was diagnosed with MPS 1, Hurler's Syndrome, one month later. I love my Mommy and Daddy, my sister Mandy (she's so pretty!) and my brother Jim (he is so funny!). There are so many people who love me, and I know that I am one of God's special children.
I hope you all had a wonderful weekend, I know we sure did! Halloween was beautiful weather wise, so we were all able to go out and trick-or-treat without all those bulky jackets and gloves. Austin really got the idea of trick-or-treating, and was having a terrific time going up to houses and chatting with all the nice people! Lucky for us, he does not yet really understand that his bag is now filled with candy… so Mommy and Daddy will just have to help empty that. J
As we went through Friday’s festivities – a party in his classroom at school, walking the neighborhood at night, getting back afterwards and spending time with family friends – I couldn’t help being overjoyed at the easiness of it all. Here were our boys, just being kids and loving every minute of it. No doctors, no meds, no stress of fitting in, no working soo hard to focus, no struggling to keep up, no worries. It was a beautiful night for all of us, and I am very grateful for it. I know I will hold those memories in my heart forever.
Now on to the not-so-easy part. We have Austin’s team meeting on Wed. morning at , and Jim’s parent-teacher conference Wed. after school. Praying for good news and good outcomes as we try to do our best to make school a positive experience for our children. We know Austin is thriving in the setting, but we are also seeing some issues with his flexibility and strength so we will find out if these are things we can improve, or if it is just disease progression. The toughest part of Hurler’s is trying to figure out what is caused by the lacking enzyme, and what is caused by a stubborn three year old!
On a different note, we have seen the Christmas “stuff” showing up everywhere in our travels recently. I have said before that one of the gifts of having a sick child is that you learn very quickly to not take joy for granted. As we move into the Thanksgiving & Christmas seasons I hope you can carry some of that mindset with you. If you are getting too stressed to enjoy your kids, change what you’re focusing on, it just doesn’t matter – they do! I have never been sorry after Christmas that I didn’t have time to shop more, I have been sorry after Christmas that I didn’t take time to make cookies with the kids. Let’s all work together to remind each other of that, and may we all then be able to have a blessed holiday season!
