Splendid Mayhem: Logen

Welcome To Holland

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.

Sunday, March 1, 2009

Logen

Logen's got infantigo! His seizures are on the rise. Neuro had us give Klonopin on Friday b/c of a weird 2 hr funk/possible seizure that happened on Thursday night. They won't increase the Keppra again b/c it's causing Logen to walk into walls and fall all over himself. This is a side effect of the drug. I wish they would just pull him off of it!!!!! His attitude/behavior has been 'not-so-great'. Also a side effect.
He's on an antibio for the Infantigo and doing well. His face has cleared up alot. The Dr said after 48 hours on the med he wouldn't be contagious, phew! It'd pass on as strep and nobody has a sore throat (yet) so I guess we are in the clear thus far.
I have sent off for the records to go from one Children's Hosp to the other. Once St Louis gets them, they will review and see whats next. We have already been told the next step needs to be a spinal tap. I just don't think we are ready to subject Logen to that.
Pray for Logen!

5 comments:

Ellen SeidmanMarch 1, 2009 at 7:33 PM
Jessica, I never even heard of infantigo till now, it sounds horrible. I hope Logen is feeling much better from it. I am so sorry about the seizures. I hope you guys get some real answers, soon. Sending good vibes your way.
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KieraMarch 1, 2009 at 8:59 PM
I am praying for Logen and hoping he feels better soon. Keep us posted on everything. I am thinking of the little guy.
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SheilaMarch 1, 2009 at 9:59 PM
Poor lil guy! I hope you find answers SOON! Hang in there!
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BarbaraMarch 2, 2009 at 1:08 PM
That poor little guy - my heart goes out to him and you. I hope he starts getting better soon. I too hope you get some answers soon. I'll be checking back for updates.
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Popcorn HouseMarch 2, 2009 at 4:08 PM
I agree I will be praying for you guys. Keep us posted!!!
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