Tuesday, July 25, 2006

RIDICULOUS PEOPLE
I wanted to make this blog a totally positive place to share with family and friends the ins and outs of our family, with an emphasis on Jack right now up until he is home from surgery...but today, with this post, I may get a little negative and just, well, VENT! Let me explain...
Some of you may or may not have noticed that I posted the e-mail I sent out to family and friends IMMEDIATELY after leaving the geneticists office, which was IMMEDIATELY after getting Jack's DX. I did my best to retell everything that the GENETICIST said to us in order to give everyone kind of an idea where we were at at THAT time. I only posted it a few weeks ago so that I had kind of a record of our journey, no other reason. I recently re-read the e-mail, and most of it still rings true, with the exception of Jack's heart obviously, but so far life is pretty typical. I say so far because I am going DAY to DAY. Hopefully he will stay healthy, but who knows...I'm certainly not burying my head in the sand like an ostrich telling myself Jack will be perfect (as I don't with my other children either by the way!) and nothing will go wrong!!! I am hopeful though, and I do have expectations that ALL my children will be supported in every way possible so that they may rise up and meet their potential. That is where I am VERY clear.

OK...onto my venting...Why did I even bring it up? I came on a couple of days ago and noticed an anonymous comment about that e-mail...It went something like this (I'm paraphrasing just a little bit because I erased it), "He either has Down syndrome or he doesn't. There is no such thing as a mild case. I know you are new to the world of Down Syndrome, but don't start your journey in a state of denial." Yep, it really did say that...I may have been off on 2 words...maybe! OK, let's analyze that...

***"he either has Down Syndrome or he doesn't" - NO KIDDING!!!!!!

***"there is no such thing as a mild case" - Okay, I will bite my tongue here and not put in my 2 cents...So just for kicks, I decided to ask my pediatrician (whose background is genetics and development BY THE WAY!) what his take on the whole thing was. He basically said yes, you either have DS or you don't. You either have that extra 21st chromosome or you don't, at least with regular T21). There is no in between (once again, NO KIDDING!)...BUT there is a HUGE range in individuals that start at MILD (yes he said MILD!) to severe. And I mean mild to severe healthwise, cognitively, developmentally, appearance, etc... i.e.-just b/c one may have mild physical features doesn't mean the cognitive delays will be mild also...but it could. Once again, this was not NEW news to me. Can we predict how Jack will be...no! but at the time of the geneticist's visit, Jack APPEARED to have mild features. He APPEARED to have mild health issues (which wasn't the case!), and the GENETICIST(not me!) told me that because Jack was breastfeeding right away, it COULD be an indicator of his cognition. Will his mental delays be MILD...we don't know, just as we don't know if our girls will have delays...we CAN however look at certain indicators...there is NOTHING wrong with that! So to answer the question of whether or not there IS such thing as a MILD case, the answer is unequivically, Yes! and once again, this isn't coming from ME, it's coming from MY research, a pediatrician, and a geneticist! Hmmmmmmmm...I guess they don't know what they're talking about!

***and finally, my favorite, "don't begin your journey in a state of denial" - YEAH, OK!!!! I'll work on that! Do you hear the sarcasm DRIPPING off my tongue?! and anyways, if my way of grieving was to be in denial for awhile, who has the right to tell me not to...

To my wonderful family and friends...the e-mail is no longer posted. I deleted it off of this site so that I could delete that pathetic comment by someone who OBVIOUSLY doesn't know me and I won't take the time or energy to explain exactly what type of person I am...John and I are ready to take on whatever comes our way. We can only live day to day...but I will not let some ignorant person tell me not to have hope for my son's future...not to believe that he may live a somewhat "normal" life (whatever that is these days). To be honest, I worry more about my daughters' futures, not my son's.

Can you tell that I am annoyed? I sat in bed reading that comment the other night, and I kept saying over and over again, "HOW DARE YOU TRY AND DISCOURAGE ME...YOU, WHO DOESN'T EVEN KNOW ME!" Whoever wrote it might have thought they were helping, but honestly, I don't need that kind of help in my life! Maybe I'm overreacting, maybe I'm taking it the wrong way, but whatever it was, those words hit me the WRONG way. Oh well, I don't know who it was or if they'll ever look at my blog again, but even if they don't, I got to vent and I feel better! **sigh**

7 comments:

Naomi said...

Sorry that you had a hurtful comment. I think a lot of people in the DS community get annoyed by people saying "oh, he must have a mild case" as if it's a disease (like he must have a mild case of chicken pox) and that they usually say it judging by appearance.

It's all a matter of semantics :) People seem to prefer to use "high functioning" rather than "mild".

I think we all expect our kids to be the best they can be and we need those hopes and dreams even if they are never met.

Right now I hope that Callum will be mainstreamed in his education, that he'll get a job, move out of home and hopefully find someone to love and share his life with. Maybe I'm living in cloud cuckoo land, and I'm sure your anonymous commenter would say I'm in denial as well! If so then I'm glad to be in denial, without those aspirations we may as well just give up now.

jacknbellasmama said...

thanks for the encouragement naomi! sorry about my rant!!! sometimes it just feels good to let it all out...:-).

April said...

Everyone has an opinion on everything once you have children. This won't be the last time you need to vent. Just know that you have a large support group of friends and family.

Karen said...

I've found that people, once myself included, are woefully undereducated about Down syndrome. Often they aren't aware of how they are coming across. Lately I've given up educating people to any strong degree, but I will act as advocate for my son when he needs it. I found too that it was me who was bothered by people's comments, not my son, and that he's now doing a wonderful job of being his own advocate. It's all a journey. I hope yours gets easier.

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Linda (Diana's Mom) said...

Of course there are so many levels of DS. I not only have a 2and a half year old with DS, I am a special Ed teacher. My students with DS have been a WIDE RANGE--Mild to severe!!!
My "favoite" question from a person (a student from CSULB who was a teacher to be and observing in a park program )was "You mean they have different likes and dislikes???!!" This was after I told him they pick different movies each week, the girls of course like.... the boys like....
Sometimes the ignorance is too much!!
I enjoyed your venting!!