I'm a Mom, Wife, & (more than full time) College Student. My family is Dairy Free (for the most part) and Gluten Free (or in the transition phase for Logen, with dysphasia it's more difficult). Logen was diagnosed with Cerebral Palsy in 2005. The Dx was taken away in 12/2008. He is undergoing many tests to find the correct Dx, our "most probable" is Mitochondrial Disease along with Epilepsy and CP. Parker came into the world at 34 weeks and besides needing a little OT for sensory issues & behavior and having food allergies- he's developing well.
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.
Jessica & Abbey (3/08)
Logen "Playing with flour" 6/05
Quotes
Laundry
Boys
A "Wirey" Parker, NICU
Parker & Mommy
Birthday Counter
"Babydoll" Logen 7/05
Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks!
A sincere THANK YOU to all of you who have added this to your blog! And, to Anelys for creating such a cute blinkie!!
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He is just so handsome!!! I think Sammy has the baby version of that hat. I love it. Think he will wear it tomorrow for the fourth!
ReplyDeleteHe is getting so big! Those are great pictures & I love the hat!
ReplyDeleteOh my, he is adorable! I can see why he loves the hat, it looks great on him!
ReplyDelete