Sandi's Wall for "Special Recognition" Messages

This page is dedicated to the people who my blog and messages have touched, educated, inspired and encouraged.  There are so many people out there who I have come across on this journey, whether through my blog, in person or the forums I lead.  I have made friends, and with those friends I have laughed and I have cried.  Doing these things are special to me and when I hear from people (known or not) it is so very rewarding and I feel they deserve to be praised.  I wish I had put this page together earlier and posted some of the rewarding comments I have received since this journey began.  I never knew that I would be able to provide the kind of comfort and support that this blog does and I am so happy it does.  My goals have always been to teach and educate those who don't know, and help those that do.  By posting these messages, I am thanking each and everyone for their kind words and also acknowledging them for their messages.  My next goal (and hopefully it becomes a reality soon) is to start a charity or foundation that will assist in doing what I have started but in a large scale way.  I hope that I am always able to add to this wall as this journey continues.
Thanks to everyone we have "met",
Sandi, John & Hunter

Sandi's Wall for "Special Recognition" Messages

Message: Thank you
Sent (On MedHelp) 21March2010


Sandi,


I received our test results today saying that our baby has a 1 in 3 chance in having down syndrome. In researching online I found you here & I also visited your blog. You have a beautiful baby boy & watching his videos & looking at his pictures only further cemented my opinion about the possibility of having a child with down syndrome. My dr & a few close family members mentioned terminating the pregnancy & I couldn't imagine doing so. Thank you for your information & all of your research & for allowing me to have a peek at your life with your absolutely perfect baby boy!!

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Message:  Your Down syndrome Book & DSAO Conference

Sent by Penny Kirby (Via Email 16Jul2010)

Sandi,

I check our your blog from time to time and I absolutely love it!  Hunter is sooooo adorable and such a great little man!  I just wanted you to know that you truly are an inspiration!  No doubt I'm always thankful knowing that you're there for support :)

I expect you to autograph my book when I see you since you're a local celebrity lol.  Be prepared for that at the conference lol.  People will probably want to get their pics taken with you too!  Next year you'll be one of the speakers!  Lots of good things lie ahead for you Sandi and you deserve it :)  If they don't invite you to be a speaker next year than there's something wrong with those people lol.

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Message: You are amazing
Sent by Jennifer (On MedHelp) 19July2010

 

Hello!  My husband and I are working with a surrogate, and we are 18 weeks pregnant with twins.  We are so excited about our babies!  We did the preliminary screens, but decided not to do an amnio.  Initial indicators were not strong that we had any issues, and we feel like we would not do anything to terminate the pregnancy regardless.  I would consider an amnio to prepare, but I am concerned about the risk, especially with twins and given all we have gone through to get pregnant to begin with.

In any case, I have been doing lots of reading, and ran across your posts and your web site.  You are an inspiration to me.  I pray that if we have a child with any type of disability, learning disorder...whatever...that we are as patient, loving and kind as you are with Hunter.  I watched your video of him learing to sit up and I almost cried.  I was just so touched by your love for your son, and how sweet his little face is.  

I know you don't know me...but I wanted you to know that you are truly an example of a great mom, and I thank God that there are people like you raising wonderful kids in this world.  Thank you for being you..and sharing your family with the world.

My best to you in getting pregnant again, and in all you do.

Jennifer

Response:
Sent by Sandi (On MedHelp) 19July2010

Dearest Jennifer,

Your email to me made me cry. It's hard to put into words, the joy I get when I read things like this. I work so hard trying to educate, and inspire others to be tolerant and patient with things they are not familiar with like Down syndrome for example. I think, in most ways, my desire to teach and help come from within - sometimes I think it's ironic how I lived up to my namesake "Sandra" meaning Helper and Defender of Mankind. But, it was indeed years before I knew the meaning of my own name.

Congratulations on your pregnancy - no matter how you achieve your family (surrogacy, IVF, natural or adoption) you become parents and it's the most wonderful journey in life that you could ever ask for. To hear what you have said, to know that you have understood the information and facts that I have listed out makes me so very happy. I feel like I have succeeded even if it's only a few who have make the connection & realization that you have and it is so rewarding.

I would like to ask you, can I put your message into my blog? I have done it on a few occasions, I like to recognize the people that my blog reaches, and I would love to somehow incorporate your message to me into my book. I feel that when you make these kinds of connections, ultimately I have won the lottery. You are so very kind to send me this kind of message, and without hesitation, I read it to my family. It is truly important to me, to let the world know that my "message" and work, has reached someone, someone like you. I do hope you will allow me to quote your entire message, and even put your first name there. (I wont use your last name, and in fact if you wish me not to include your name, I certainly won’t.)

Even though we are not personal friends, you are a friend of mine. And I would be honoured to be able to call you a friend. You yourself are to be applauded for your decisions with your pregnancy, if you learn that there might me any disabilities or disorders. I just told someone yesterday evening, "You are stronger than you think, and I wholeheartedly believe, in the face of adversity, we become the strongest person who we never knew we could be. And it's not just me, it's you and everyone who faces it." I do believe this, and you are proof. Some of us are able to prepare for these kinds of "adversities" full steam ahead and others, fall into it but make there way regardless. You too are a great mom. Mom's start before the eggs is ever conceived. Mom's start with the idea of becoming a Mom, and that is why we are able to nurture.

I hope that we can keep talking, and that you can share with me all your joys as you prepare for mommyhood! I thank you so much for the wishes in getting pregnant again, we are hoping that this cycle will be a lucky one!
I am sure no matter what comes you will be terrific and a super mom yourself. I certainly never thought of myself as a great mom, in fact there are days I think I need extra lessons! That is probably what makes us better though, when we are humbled by our own children. I wrote once in my blog that Hunter had saved my life, in more ways than one, and I truly meant it.

All my love,

Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator

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Message: Down syndrome
Sent by Kathy M. (Via Email) 25Aug2010

I was reading your recent blog post & the update that you are trying to finalize the Parent/Child Support Group. I would LOVE to attend this group. I have been trying to connect myself & my son with other parents & children with DS. If you could send me more information that would be wonderful! I would love to meet you & Hunter as well!!  I didn't mention it in my previous email (i forgot!) but I admire your strength & determination with Hunter. Hunter is where he is now because of his strength & will but also because of his mother's love & determination to give him everything he needs to succeed. I know how difficult it is daily to have to do exercises & physiotherapy, early intervention, doctor's appointments not to mention be a wife and just a regular ol' mom!

Response:

Sent by Sandi (Via Email) 25Aug2010

First off, I wanted to say THANK YOU so very much for the kind words!  It meant so much to me that I had to respond back to you even though it is now 7 minutes to 4 am!  (Yes, 4 am!)  I would love to meet you too, and I am so glad that you have found me!  As you read, I will be getting together with the YMCA to finalize the details for the group, so as soon as I get the date, I will definitely email you and give you all the details!!  (I will also post it on my blog, so that everyone will know as well.)

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Message: You Rock! 

In response to an advocate complaint email I wrote regarding Ms. Jennifer Aniston using the "R" word.

Sent by Melissa (Via Email) 04Sep2010

Sandi,
I really don't know how you do it all! Great letter, please keep me updated with this. I am so sick of hearing this word being used in my personal life and by people on T.V. I feel very proud to "know" you and I believe that if we all stick together and take a stand, the "R" word will be no more. Thank you from my entire family, especially Broden and my nephew, Christian who has C.P. and P.V.L.
Thank You, Thank You, Thank You!!!
 
Sincerely,
Melissa Armenta

Response:

Sent by Sandi (Via email) 04Sep2010

You are welcome Melissa!!

I most certainly will keep you updated with this ongoing letter.  I am so disappointed with the response I received from the LiliClaire Foundation.  It is really disturbing that "money" and "fame" can pay off such terrible mistakes, which are then hidden away or swept under the rug to no longer be dealt with.  It's a real shame.

Sincerely,

Sandi

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Message:  Thanks Sandi

Sent by Joe (Via MedHelp) 13Sep2010

It was great to read some of your blog and see how you deal with the situation and to realize that DS isn't the tragedy that many believe it to be.  It has convinced me that with or without DS our baby will be a blessing and that my wife and I can deal with DS if that is the result.  Thank you for that.
We'll hope for good outcoming and try to stay positive.

Thanks again.
Joe 

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