Tuesday, February 1, 2011

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.


texcanadian said...

They will love you because you love them so feircely.

Angeliska said...

Dear Gail,
I understand how hard it must be to battle those thoughts of guilt, but it is just not your fault, darling. Your beautiful children will not hate you - you gave them life! I think those two young souls are wise beyond their years... I know they will go on to do great things (much greater than football or hockey!) You are an amazing mother, and an incredibly inspiring woman. You have come through so much hardship with grace and elegance. Do not let that guilt weigh heavy on your pretty shoulders - it is not yours, and it serves no purpose, except to make you feel bad and keep you up at night. I'm sending good thoughts your way, and to the twins. Your strength is formidable - keep it up.
with love + much respect,

charla wood said...

I think guilt is part of being a parent and because we love so strongly as a parent. But i try not to take the guilt seriously. I often think the same about my daughter if she blames me for her disabilities. I can only take a few seconds of guilt it really gets me down. Keep your chin up.

Me said...

Gail ... I know no matter what i say you will continue to go there ... but remember you did everything you knew to do to protect those children in utero ... i know that i knew you when you were pg remember ... i truly believe that some people are just meant to be mothers of special needs children ... you are doing everything right to educate them and protect now just as you have since the day you decided to become pg ... i admire your determination and strength to get through all of the S*** you have had to deal with ... you put yourself out there and i'm sure there are other mothers of toxo children that are learning from your stories ... here is a poem that i learned a very long time ago and i think you will appreciate it ... http://www.our-kids.org/Archives/Heavens_special_child.html

Anonymous said...

Unless you ate directly out of a litter box while pregnant, you have nothing to feel guilty about!

Fiercely -- I love that word! It is abundantly evident that you love your children fiercely. That is what they will love you for...

pianorat said...

Dear Toxomaman:

I am a student taking microbiology. I have chosen the topic "toxoplasmosis" for my presentation and am doing research. I found your blog via wikipedia and am fascinated by what I find. Your story is compelling, and your children appear to be absolutetly incredible and tres jolie. BTW I consider Blue Velvet and Mildred Pierce among my favorite movies. And rembember enjoyibng Son of Sam, but should review again now that it is one of your best.

I would like to use your story as part of my presentation. If you would consider the request, I would love for you to reply to me and share in a paragraph what you would like a classroom (of soon to be medical professionals) of students to know about the disease and what your family has experienced because of it.

Thanks for considering the proposal,

Anonymous said...

It is hard and it isn't fair, BUT, you are an inspiration. I know, too, that being an inspiration wasn't a primary goal! Before the last "Amen" (so be it) your children will raise you up and praise you. Keep your chin up and feel the sun shine on your face.
Hugs...just for you.

Anonymous said...

Just continue to love them, Evan, and mostly, yourself.

Anonymous said...

God bless you.
As I also have Toxo since birth. With less issues I am blind in one eye and have no pretial vision in the other. I also couldn't play sports and have had restrictions you'll find something to do. Thats being a good mom is all about. Your kids will love you everyday.
If you ever need someone to chat with my email is Inelson@yahoo.com


Nicole said...

Guilt-- I struggle with it each and everyday.

Please contact me next time you are in Chicago (how can I contact you?). My son has congenital toxo. He is blind in his right eye and has limited vision in his left; but he is a superstar!

Kindest Regards,