My Journal - Week 57 (23Sep10)


I am proud to post the following message.  A few days back, I had opened my email and found my usual BabyCentre previews email.  This is a daily listing of the most recent threads posted on one of my favourite sites and support groups.  While reading down the list, I noticed one thread with my newest book as the title.  Of course, this intrigued me!  I opened the thread and found this wonderful message.  I had no idea that it had been written - it was my first book review!  This is what the message said:

 "I ordered Sandi's book and we have read it a few times already.  Stefi is too young to even look at the pictures without destoying it.  To my surprise- My middle son, Cullen, who is only 4 - loves the book.  He asks me questions all of the time.  He asked if we knew anyone else with Ds.  He asked why she has 47 chromosomes.  How many does he have, Mommy, Daddy and everyone else he knows.  Fortunately he knows a 22 year old with Ds so he can see an adult compared to Stefi.   He is really starting to understand.  I LOVE THIS BOOK!  Thanks Sandi!"
- Carey

I had a huge silly smile on my face.  I was indeed proud and felt a huge sense of reward.  It is moments like this that make everything that I do, mean so much.  The message additionally served to remind me of a few things.  Even when there are people out there who are negative or plain mean (and the world is full of them), there are nice, friendly and warm people who want you to know that they appreciate you and the work you do.

I am posting this message for two reasons.  The first and most important is that I am pleased that I did something that made a difference.  The goal was met and the reason for writing the book has already succeeded.  The second reason is sort of one I debated with myself whether I should even mention but honestly after much personal debate, I felt I should.  Earlier I had received a disturbing message through one of my other support sites, MedHelp.  While I have absolutely have nothing bad to say about MedHelp, I guess I should have been more aware that out there in the big world, there are malicious people who have nothing more then bad intentions to be directly rude and nasty to others.  I think most people who know me, know that I want nothing more than to be helpful.  To be supportive and cultivate friendships that will hopefully last a life time.  I have never professed to be an "expert" or "professional".  In fact, everyone can catch me saying, I am still learning  each and everyday and my son Hunter is my best teacher.  There is one anonymous person out there that thinks my support is nothing more then a scam.  This person told me that the reason I do what I do is nothing short of self indulgent.  The actual quote that was written to me was that I was, "wallowing in self emulation and delusions of grandeur seems to be a far greater reward for you, me thinks. Far greater than actually helping somebody."

I can't even begin to describe the feelings that I have about this.  This person's comment is suggestive that I had my son (knowing full well prenatally that he had Down syndrome) to capitalize on educating others - to feel powerful and teach everyone.  Perhaps if I didn't care so much, or if I actually was this person that was described, I would be able to brush this off and not give more then a second glance to it.  But being told something like this feels horrible and like a punishment.  I know that many of my friends and family will question why I let this get to me or even wrote about this.  My answer?  It is extremely important to me that people "out there" know that something like this hurts me - Police Officer or not.  I am not a machine.  That comments like this, (along with the whole message in general) disturb me significantly.  Now, I will be clear - nothing that was written had anything to do with Hunter or Down syndrome.  The context of the message was all about me and what this person thought about my being an "advocate" or "support" to the world involving special needs, genetics and more specifically my position as a Community Leader for the several Forums on the website MedHelp that I volunteer my time to.  In the begninning of the year, I was asked by a staff member of a website called MedHelp to lead three comminity forums.  They felt that I had a lot of information and "expertise" as they called it, which would be beneficial to those who frequented their website and those specific forums.  I was honoured and immediately thought doing this was right up my alley of helping.  Being a person who loves to help, it was very important to me to say yes.  Never did it cross my mind that being a support to others would land me a description from some unknown person as being "Authratative and full of Crap".   The person, who I can't even name (because they can only bully and victimize behind a screen name) could not focus on one thing with good criticsim, instead slandered me, my profession and my information (or lack there of) to the Nth degree.

The lesson that I have learned?  Probably the largest lesson is that I am far too sensitive.  Only people who are interested in bettering you with positive criticism are worth taking seriously.  People who hide behind fake names, who taunt or bully, who have nothing better to add to their negative message are useless to me.  At first I was very distressed by the message, later I was enraged.  Now I am calming down to a level of being indifferent but still hurt.  I know on a personal level why I do the things I do.  And not one of the reasons are to make myself seem more important or better than anyone else.  But, I do know that if ever I thought I could do or provide someone with better information then what I saw before me, I would probably keep it to myself.  I have no need to make someone feel small or terrible.  If ever I have a criticism about anything, I know I had better come up with a better way of doing it or be prepared to take it over and do better then the other person if I think my mouth is worth shooting off about what I was complaining about.  In other words, I simply would never treat anyone that way.  It's just uncalled for.  The best yet is that this anonymous person hasn't been involved on the site for very long.  A total of less then 23 days maximum, since their join date is listed as Sep 2010.  I guess in hindsight I really ought not to concern myself with those who are so nasty if they have actually spent as little time as they have being "involved" on the site before I take them seriously.

But that's enough for me - the positive point to the post was that my book made an impact and someone's family benefited.  I love that the point behind my book was actually achieved.  Thank you so very much Carey & Family.  I hope one day soon, Stefi will also benefit from this (even though without having read it yet she already has by her brother).


  1. Sad that people feel so negative towards those who try to help reach out and make the world smarter. Carry on Sandi. You are making a worthwhile contribution.

  2. Hi Sandi,
    I have not been on your blog in a while, so today when stopping to check in on you I saw your most recent post. I want you to know that I am extremely proud to have you and Hunter as a part of our "Community". Even if we never meet, or had never even spoken via email, you would still mean the world to me. Your posts about Hunter and how well he is doing give me the hope to move forward and keep striving to help Amelia do these things. Reading about him drinking from his sippy when he was still only 5 months, and working on walking so soon.. (or actually right on target) .. It all makes a WORLD of difference in my life, as I'm sure it does with others. You are an amazing advocate and a downright wonderful person in general. I hope someday that I can do for Amelia what you have done for Hunter and all of the other children out the with DS. Keep up the good work, we need it. Hugs for Hunter. :)

    A & A

  3. I just had to email you as soon as I read your blog. What an a$$!!!!!!!! Who the hell does that person think they are? I personally feel it's someone who wishes that they could do better for themselves but have never had the gall or the common sense to do something with their own life. I know it's so hard not to be offended by such a direct personal attack. If I knew who it was you can bet I'd be writing them a wonderfully personalized message compliments of myself and others whom lives you have not only touched but made an enormous difference. You've given me the courage to face Ds head on and to educate myself and as many others as I can about the misconceptions and stereotypes that are out there. I'm really not sure what I would have done without your help and support. I will be a better mother, Hubby will be a better father, and our son will be more enriched and know who he is is because of his personality, not because of his Ds.

    You really are an incredible person and I feel honoured to have learned from you and look forward to meeting you one day :)

    All the best,


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