I like the funny looking ones best.

On the way to skiing I visited the one other Virginian with Kniest. He is 10. I haven’t seen him in 6 years.  He is one of the coolest kids I know. He has a zoo in his room with a snake, frogs, several lizards and a chameleon. I held them all to his delight (adult females who have affection for reptiles and amphibians are hard to find).  He is also an artist and has beautiful, framed colored pencil drawings all over his house.   He is brilliant, makes straight As, has a great sense of humor and a fun personality.  He also happens to be the size of the average 4 yo and we have the same face and eyes and hands.

And for the first time in a while I thought about what it would be like to have a child, my child with Kniest.   I remember being a teenager and thinking when I am older I will know what I want. I will know rather I am ok with 50/50 odds and if I could live with the gulit of knowing that I could have prevented my child’s disability by adopting.  The truth of the matter is I am 24 and probaly more confused than I was at 14.

Its such a multifaceted decision that is so caught up in my own fears and insecurities and identity that I find myself running in circles.  On the one hand, who doesn’t imagine having a child that looks like you and that has similar life experiences to you?  And besides I am always talking about how I would never have been the strong woman that I am today if I have been born average. And when I see  children like my friend who I visited who are amazing, gifted and adorable I can’t help but dream about having a child like that.  Lots of women with Kniest have babies..many have one average and one with Kniest. And ultimately God would make the decision not me.

But on the other hand, I have this image of me sitting in a surgical waiting room somewhere wringing my hands and facing agonizing gulit knowing EXACTLY what my kid is going through and knowing that I could have prevented it.  Even knowing God is in control would not entirely assuage my gulit. I advocate for adoption naturally….no matter what I want to adopt anyway…but I think in the deep places in my heart I always imagined being pregnant with my own at least once. A small side note if I did decide to carry my own child…there will be many in my profession who think this decision down right irresponsible. I don’t really care what they think…but I am sure it will make for an interesting 9 months…

ultimately I wouldn’t’ have a kid  naturally (I will adopt with or without the guy ) in less I found the right guy anyway and he would of course have some say…so I suppose this endless monologue is futile. …I just find it interesting that when I thought the decision would get easier and more well defined….its has gotten so much more complicated and ambigious.

Learning Stuff

I confess I spend a lot of my life as a medical student feeling ridicously dumb. Sometime this feeling paralyzes me and I forget how to spell my own name much less what a rt bundle branch looks like or the 17 causes of pancreatitis.  Sometimes I forget  simple things.

This past weekend I went skiing again and I apparently didn’t forget what I had learned two weeks before. It was even better than the first time.   I can turn now and break my speed. I love turning I love cutting into the side of the hill and then cutting hard back to the other side.  Its sort of like flying. By the end they were talking about taking me off the tether at my next set of lessons and I was terrified.  I knew without the tether I would fall twice as much and I was afraid of getting hurt and as always of feeling dumb.

I need to cut my tether in med school. I need to be ok with falling, with hurting my ego and realize that falling is what you do when you are learning.

yes its a cheesy analogy deal with it.

moral model on steriods and what the heck…

The moral model….think disability in terms of The Hunchback of Norte Dame, Phantom of the Opera, some bibical stories (without the proper context!!!?!?!)…its either a curse or a special, special, inspiring gift. Both are hugely problematic. The later which is very common in many good intending avg people who want to HELP disabled people particularly cute, small kids with disabilities.

One of my favorite peds professors is on the board at a camp for kids with chronic illnesses or disabilities. He really pushed me to apply to work some family weekends this fall. And I did.  And this weekend I went. the place is amazing, financed by Nascar it has the best of everything in terms of facilities. Its by far the nicest camp I ever been invovled with.  The program is well run, creative, fun and well organized. Every last detail is scrutinized to make just right for disabled people and their families.  Its flawless.

well maybe not flawless….I noticed something odd the moment I walked into the first staff meeting. I was the only one in the entire room on wheels. I would discover later that there was one other staff member with a disability. She has been volunteering for a year…this was the first weekend they ever let her actually work on her own as full pledged counselor. …oh and she is a former camper. (bang head against wall)

The time with the campers was great. I really enjoyed pouring into the kids and watching them try new things and be kids. The only thing I noticed was a subtle sort of side effect of the flawless attention to detail.  Every need of each disabled person was taken care…to the pt that there was no reason to push oneself, no reason to clean one’s own table, no reason to really be remotely independent.  I get that they want to give the kids a vacation and to have FUN! And I want that too I just want them to realize that they can relax and have fun and be independent whole human beings. Isn’t that the point of camp? TO teach indepedence and confidence…not to be babysat on steriods right??? …someone comment and tell me if I am nuts.

The time with the staff was more awkward than med school orientation (which is saying something). Now I am going to admit I had stuff to do in my free time study, catch up on some computer stuff , talk on my cellphone (or try I had poor reception) and nap… yes nap. (in short I didn’t spend a lot of time trying to make new best friends) But my fellow disabled counselor who has been working there for over a year tried hard to hang out with the rest of the young adult staff members and got left behind and left out.  She followed me around for all the non-camper time. I liked her and I enjoyed her company but her utter isolation from the other staff made me furious.

My whole camp experience can be summed up as the following: When the disabled person is small, cute and someone who needs my attention and care they are fun and great.  These cute, cuddly creatures are SPECIAL and have SPEICAL needs..we most help them with all things so they feel SPECIAL and and by doing this we think are empowering them (what we don’t know is we are renforcing the social norms that they will never be able to do thing sfor themselves)…Now when the disabled person is grown up sized and my peer and wants to be treated as an equal they are well…maybe scary, maybe annoying, maybe they cramp my style.  They are still SPEICAL however and have SPECIAL needs and thus probaly cannot take care of other SPECIAL people. The sheer irony of the whole situation clouded the experience for me.

I think when i go back in March I am going to take a giant NOTHING FOR US WITHOUT US (disability rights movement catch phrase that applies so well to do this) in big, big sparkly red letters and in the middle of the night I am going to hang from the rafters of the dining hall….maybe I will get some of the teenage campers to help me we can stage a sit in…and demand to be treated as equals.

ok not really but I did call every disabled person in the tri state area I know and bribed them with promises of brownies, chocolate and free pediatric care one day if they apply to work on staff.   and frankly any avg people who understrand this entry…if you live in NC…e-mail me and I will send you an applicaiton.

end rant.

best week ever

In the last week….I discovered

……next summer I am going back to ROMANIA!!!!!!!!!!!!!!!!

…………..and ITALY!!!!!!!!!! (for the first time)

……………………and SPAIN!!!!!!!!!!!!!!!!!! (for the first time

…………………………….and then I am going to Kenya in JAN 2010!!

…………………………………..also I learned how to wheelchair ski!!!!!!!!!!

(http://community.webshots.com/user/wakeelf3)

best week ever. Its a looong story. but the short of is it. Tori is graduating and the Longs are carpe diem! and going to Europe. And it costs next to nothing to fly from Spain to Romania so naturally i am going for three weeks. Took me a litle while to clear it with the school but I have some connections and made it work.

Fourth year in general is going to rock! I am going to spend two months abroad, a month at Dupont (the childrens’ hospital I spent all my patient time at) with my peds ortho, peds, peds, peds all the time and then finishing up with ED with Kaniksha (best friend in med school) next March!!!!

Family Fued….

I am going wheelchair skiing this weekend.  Its going to be great. Emily is meeting me and I am staying with some friends from school.

I was dreading telling my Daddy (yes its Daddy I am from the south deal with it) .  There is a saying in our family: Victoria will laugh at what Dad says to do, Emily will do it to the letter and I will do the oppositte.  0:)  I love him and we are close. But lets be honest he is overprotective (perhaps for good reason).  If I had listened to hm I would have never gone to Romania, never gone to medical school , never gone to Wake Med and probaly would be living in my parents’ basement.  SO somewhere around the age of 16 I decided that while I loved him. He would always see me as far more physically and emotionally fragile than I saw myself.

Now don’t go thinking he is awful. He is really good at admitting he was wrong. And tells everyone he knows about his oldest daugther double major at Wake who is now going to do medical missions when she graduates Wake Med….he loves to hear my travel stories and we have read lot of good Russian literature and I photographed lots of WWII landmarks for him in my travels.

I could just hear exactly what he was going to say as I told him…are you crazy…you are almost done with your third year…do you really think now is a good time for a femur head fracture….and I would still go but I would feel uneasy and guilty for at least the first 24hrs.

so the day came and I called him and told him.  And then I nearly fell over and broke hip.  “That sounds like fun, a great way to blow off steam…just wear a helmet and use common sense.”  he said.  he was actually happy for me, excited for me.  WHO ARE YOU AND WHAT HAVE YOU DONE WITH DADDY?

I decided he was either A. intoxicated, B. is using some sort of weird reverse psychology on me or C. has grown to see me much as I see myself or at lest in the same galaxy.   I like C so I am going with it.

you know we always talk about children growing up, but I think parents grow along the way too.