Things have been crazy lately - lots of ups and downs. Ryan is no longer able to stay in private daycare. They are unable to care for him at this point. The daycare has been very good to us and it was a hard decision for them but I knew this day was coming. Ryan has been doing a lot of kicking, throwing and hair pulling and I am always waiting to hear that he really hurt someone. He doesn't mean to hurt anyone - he just doesn't know how to communicate. He simply doesn't understand. It breaks our hearts though b/c he has been with many of these same kids since he was 6 months old. He has two girls he talks about constantly and it is sad he wont see them anymore. Brayden will remain at the daycare. He is still behaving normally for a 2 year old. SO - now trying to figure out what to do. I am looking into different options for the summer.
We are finally taking the boys to see a cardiologist tomorrow for some baseline tests. The list of doctors we are supposed to follow with is very long and I hate dragging them constantly back and forth to the doctor. They really dont want to be there and believe me - they let everyone know!! So, my mom is coming for extra reinforcement!
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Our Journey
For those who don't know our story, our lives were changed forever in 2009. In June 2009, our son Ryan (then 4 years old) was diagnosed with MPS IIIA (Sanfilippo Syndrome). Since it is a genetic disorder, our son Brayden (then 18 months old) was tested and he was diagnosed in September 2009. You can not even prepare yourself for news like this. There were times that Carl and I thought we could not handle it but we know we have to handle it because our boys need us more than ever now. These boys couldn't be more loved by our families and we will all make sure they have the fullest and best lives they can. We have met many wonderful parents who have children with Sanfilippo Syndrome as well as other forms of MPS and their strength and determination inspire us to be strong and to never give up our kids. I saw this writing on another parent's website and wanted to post it here.
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 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 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.
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 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 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.
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