My Journal - Week 31 (21Mar10)

Happy World Down syndrome Awareness Day!

Today appropriately is named Down syndrome Awareness Day because of the date:  3 (March) 21 (For the 21st chromosome in Trisomy 21).  I am hoping that today all the voices are heard and people everywhere who have Down syndrome in their lives are shining.

Recently a group that I became afiliated some time ago discovered that there were some terrible people out there demeaning children with down syndrome by defacing their beautiful pictures.  It got to a point where some of my fellow bloggers were having second thoughs about posting pictures and stories of their children.  This really saddended me and after a while angered me that such bullying will defeat the purpose of us being out here.

It's time I post a little story about how my blog helped someone who needed our voice (this is posted with permission).

A few weeks ago, I received a note (in my new Down syndrome forum) from a mom to be who had learned her baby had a 1 in 3 chance of having Down syndrome.  Distraught, she turned to the interent to research and learn all she could before making any rash decisions.  This is what she sent me:

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!!

Now, unfortunately the story doesn't end happily.  After approximately 17 weeks into her pregnancy my new friend lost her baby, and after all the worry and concern, Down syndrome seemed so irrelevant and minute in comparrison to loosing her baby.  She wrote:

Sandi,
We had a sample sent to the specialists the day that he passed, My dr. said it should take approx. 7-10 days for the results.  It seems so strange to us now, we were so upset & stressed at the thought of him having ds.  Now, we would give anything just to have him.  DS seems so trivial to be upset about, we wouldn't have loved him any less.  Part of me doesn't want to know what was 'wrong' with him, to me he was absolutely perfect.  I know that if I don't find out I will never get any closure.  On the 12th of April DH & I are also meeting with a genetic counsellor to discuss our losses & family history.  It seems a little too coincidental that both pregnancies were lost within a few days of each other.  They are going to take blood from both of us & run some tests.  I have 3 children from a previous marriage & he has 6!!!  All of them perfectly healthy pregnancies & children.  They are thinking there may be a problem with our genes together....I hope not.  Whatever they may find, I pray that there is something that we can do.  Thank you so much for your posts, it means a lot to know that I have so much support.

 
It is for this reason I do what I do.  When I found out about Hunter's diagnosis, I turned to the Internet for research.  I needed to read about real life situations, and many blogs had that.  Regular medical information was available but it was blunt and static.  Blogs are full of life and reality.  They had the real stories and circumstances I wanted to read about.  The blogs were full of true emotions, whether joy or sadness.  That is what I needed when I was researching.  If they were not there for me, I am not sure where I would be today.  Family and friends have opinions but that's all they are.  With out the experience, those opinions can not answer the many questions that many of us had when we learned about the Down syndrome diagnosis.

While I never want anyone to degrade my son, deface his picture or do anything negative, I will not be complacent with my blog.  I will endeavour to protect him physically and emotionally but I will not be bullied into submission and stop posting about our life.  Our children need a voice, as do the children with Down syndrome of the future.  Predators will always be out there, but they will not win.  If we can save one child, we have done our job.