Chicago, Chicago...

...so, I have written about this before: our trip to Chicago for the twins' participation in the Toxoplasmosis Study Group at the University of Chicago. This was our 4th trip up there to see Dr McLeod and her team in the past 5 1/2 years. Before I continue, however, I just need to say something about "Toxo". It sucks - it really does. Yes, I've said that about cancer. BUT, there's a big difference. Cancer can be treated and one can be declared "Cancer free." (Don't get me wrong, definitely NOT trying to make light of it...as I have known 2 people these past few weeks who fought their cancers to the bitter end...)

However, babies born with congenital toxoplasmosis will never be Toxo-free. They are born with that nasty little parasite swimming around in their eyes and their brains -thanks to transmission through cat feces (no, I don't have cats), improperly washed fruits or vegetables, or undercooked meats. So, if you have a cat - keep it inside. If you're pregnant, get tested. Cook your meats, wash your vegetales AND wash your cutting utensils. And if you're not immune, get treated.

Over the past 4 visits to Chicago, I have had the opportunity to talk to other Moms. None of them can remember being ill while pregnant or how they could have possibly contracted the parasitic infection. Some have kids with no symptoms, others have kids with varying degrees of effects on the eyes or in the brains of their children. But the one thing we all seem to have in common is guilt - even if we don't discuss it. How could we have let this happen? We were so careful when we were pregnant. If they were like me, having undergone fertility treatments, I was tested beforehand for everything - or at least, I thought I was. I often wonder if the twins will resent me when they learn more about this affliction. Will Creed be pissed at me because he can't play football or hockey with 2 shunts in his brain? Will Zelda hate me because I transmitted the parasite that caused her blindness?

Shit, I really didn't want to go "there". I think I have gotten off track from telling about our weekend. I'm stopping here. For now.

Happy Mother's Day...

My Mother's day dedication to all of the "Toxo Mamas" everywhere:
Just ignore what I see as the obvious problems with this essay and take a minute to read it for what it's worth...

The Special Mother
By Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The patron saint will be Cecilia"
"This one gets twins. The patron saint will be Matthew"
"This one gets a son. The patron saint.....give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child"

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter ? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm giving to her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God Smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a common woman whom I will bless with a child less then perfect. She doesn't realize it yet, but she is envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says"Momma" for the first time she will be present at the miracle and will know it. When she describes a tree or sunset to a blind child, she will see it as few people ever see my creations."

" I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her patron saint?" asks the angel, his pen poised in mid air."

God smiles "A mirror will suffice"

Please honor our toxo babies...

Zelda and Creed will be turning 2 years old this week. They are thriving! But for the rest of their lives, they will have to deal with being born with congenital toxoplasmosis...and so does Fin. He's their friend that they met in Chicago through the Toxoplasmosis study. He was born with the evil parasite, too. His mother also unknowingly contracted the infection while pregnant. It really, really sucks! As parents, we want only the best for our kids, and if that means learning to live in Holland (see a few posts back) - by god, we'll do it!

Please honor our babies and go to Fin's website. His dad will be running the Chicago Marathon with 2 others to raise money for the Toxoplasmosis Study Group to help all of the babies born with this ridiculously strident infection.

Happy Birthday Toxotwins! And love to Fin and his parents! Please donate - pay it forward...www.thefinster.com

Welcome to Holland

This was sent to me by a couple whose son was born with congenital toxoplasmosis. Read it!! It's appropriate for so many of us in so many different ways.

"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 never would 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.

- Emily Pearl Kingsley