DS and my daughter

Before we even conceived our daughter I knew that she would be amazing. I knew that extra chromosome that her brother carries would affect her in such a positive way. While Hannah is only 3 and in the throws of being a strong willed drama queen I can already tell she is going to be a more compassionate, understanding young woman than I ever was. What some would call different is normal for her and that is something I wish all children were exposed to. I believe it would make for a much more understanding society. Maybe there would be less bullying in school and more acceptance. I watch Hannah at Zach's soccer games and I love that kids in wheelchairs, using walkers and walking with crutches don't phase her one bit. She doesn't even notice it. I also love that she understands Zach's speech better than we do. There are times I am not understanding what he is telling me and I ask him to repeat it and finally Hannah will turn to me and say "he said........". That warms my heart. I have no doubt that they will continue to be great friends and that she will likely be his biggest advocate.

Picture Day

Today is picture day at school for Zach. He insisted that he have "spiky hair". I didn't want to do it because that is really not him. We generally never spike his hair and I want him picture to look like... well him. Since last year he hated the whole process of pictures and ended up having teary eyes in his pictures, I decided to go along with it in hopes that he was happier with the picture process.

Alarming statistics

Down syndrome occurs in 1 in 733 LIVE births.

Approximately 90% of women who find out prenatally that their child has this extra chromosome terminates the pregnancy.

90%! That is crazy. Sometimes I feel like I am raising an endangered kind. For lack of a way better term. I feel that with the earlier prenatal screenings this percentage is going to continue to climb. I fear that the acceptance of individuals like my son will not get better over the years but in fact get worse, since there will be less and less people like him born. 

90%! So many lives are ended because they are deemed unworthy. Because doctors suggest 'taking care of the problem' rather than educating and because scared parents are worried about what society will think of something less than "perfect". 


I cannot begin to count the number of people that Zach has touched. People that have personally told me how much they love my son. People I don't know come up to us at the grocery store or when we are around town and tell us they have worked with Zach at school, or that their kid rides with Zach on the bus and Zach has made such a positive impact on their life that they feel compelled to come up to Chris and I and tell us about it.

They tell us just how much they love him. 

How sweet he is. 

How their typically rambunctious child is calmed by Zach. 

How Zach comforted their kid at school when their kid got hurt.

The list goes on. 

This does not sound like a soul that should not be here with us. This is not a life that is a burden on society. This child has taught things to more people than we will ever know. Sure they might not be things that you can record on a report card. Or that will help you ace a test. But what is more important is that he has taught people what true uncensored love is. And not to judge a book by the cover that society has created. 

I feel sorry for all of the people that don't have a Zachary in their life because the way he has enriched mine is unexplainable and is something I am so thankful for.

The R Word

Anyone that knows me knows how much I hate this word and how much it hurts me to hear it. If you don't know why it is terrible and/or want to read a few things about why I hate it so much I have blogged about it a few times here, here and one of my favorites here.

There has been some media lately on this subject and recently a bill was passed to eliminate the term "retarded". (You can read about it here). I have mixed feelings (mostly good) about this that I plan to talk about in a later post.

This change is great news because I hate seeing the term "mentally retarded" all over Zach's education plans. See... Zach does not qualify for services because he has Down syndrome. Zach qualifies because he is considered mentally retarded. (now you see why I hate the word being used as slang?). Technically, someone is classified as "mentally retarded" based off of their IQ score yet Zach has never had an IQ test (could they even do an IQ test on a 6 year old? Any 6 year old?). So the fact that he is assumed "retarded" based off of his extra chromosome really sucks!


Here is where you can help. Don't use the word. Correct your peers when they use it. Don't let your children/nieces/nephews/siblings/cousins use it. I hope that in my lifetime the R word will be as unacceptable as the N word.


Here is one last article by John C McGinley (who has a son with Down syndrome) that is fantastic.

So there. Go. Read... and don't say I never taught you anything!

I leave you with one last video clip. 

Spread the word to end the word!

People First Language

Click here to read a more in depth article about People First Language.

This is something that I feel strongly about and really strikes a nerve with me. I have corrected people and had them roll their eyes at me. Like it is all about being PC and that it really doesn't matter how they word it. But it DOES matter.

My son is not a "Downs child". He is a person. He is my son. He is not defined by a medical term that his genetic make up is labeled as. Yes he happens to carry an extra chromosome. Yes he has Down syndrome. But he is not "a Down syndrome". Down syndrome does not define who he is.

What if you had cancer? Would you be accepting of somebody calling you cancer woman? Or crippled man? I would hope not because that does not define you.

I hope you take the time to read through the document I linked to above and educate yourself. Individuals with disabilities want, and deserve, to be seen as people first and respected as valued members of society.

Buddy Walk

This past June we took part in the 1st Annual Buddy Walk with the Down Syndrome Association of Santa Barbara County.

It was a beautiful day and the location could not have been more picturesque. We are humbled by our generous family and friends that made donations in our names to support our team, Zachtastic.

Zach refused to wear his Buddy Walk shirt but the Superman one he had on was fitting.

Being that it was the first year it was a fairly small group but we look forward to being part of this great group as it grows over the years. 


I didn't take too many pictures (surprising, I know).. but here are a few I did get.




So excited when he got it!



Waiting to do his Home Depot craft



Games!









Hangin' with Smokey


Ice Cream Face!



"Aww mom... don't take my picture!"


(see those palm trees in the background? The ocean is just beyond that. I love where we live!)





The Walk Begins!! 


"Don't worry Dad... I got this!"


Helping Nana pull Hannah in the wagon

Welcome to Holland

Welcome to Holland by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…


When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

As heard...

The other night I was tucking Zach in bed for the night. For the record, it had been 113 that day so it was pretty warm in our house. This is how the conversation went...

Zach: Mama... lay with me

Me: No Zach, it is way too hot

Zach: No mama. It is not hot. The sun went down. I show you. (gesturing towards the window)

Love this kid!

Did you know prenatally?

I get this question from time to time. So, for those of you who have wanted to ask and never did... here goes...

No. We did not know prenatally. I am glad we did not know. Before we had the prenatal testing we discussed what we would do if the tests determined there was a problem. We both agreed we would do nothing and we would continue with the pregnancy and love the baby regardless. I am sure that is what most people say before they go in for prenatal testing. Before they are faced with facts and statistics. Before they are asked by presumptions doctors "when should we schedule the termination?". Before they are painted worst case scenario pictures as the norm. The truth is... I don't know if we would have continued the pregnancy. I like to think that I had enough love and maturity in me but I honestly don't know.

I am sure this is not the "popular" thing for anyone to say but this is my blog with my thoughts, if you don't like it, you are free to click that little x in the upper right corner of your browser

I was a totally different person before I had Zachary.

Chris and I were a totally different couple. That extra chromosome changed me to my core. I don't know if the person I was before would have accepted this. Before I had this little pink person staring up at me. This person that needed nothing but love from me. This person that had shared my body for 40 weeks and I had grown to love so deeply. At 18 weeks when I had that screening done, I hadn't yet felt his first little flutter. I didn't know that he was a he. I didn't know what his name would be. I had no idea what it would feel like to stare at your child and feel that overwhelming love the moment they come out of your body.

I was busy making wedding plans and adjusting to quitting smoking and drinking wine and coffee. While Chris and I were very much in love and planning to get married, I got pregnant quicker than we expected so we pushed the wedding up a little bit. I don't know that we would have felt secure enough in our relationship, or in ourselves in general, to accept something like this. I am ashamed to say that I was that annoying teenager that made jokes about the short bus. That didn't know people with disabilities. Like really know who they are. Sure I may have been cordial in passing but I didn't take the time to really know who they were. At my school the special ed class was grossly removed from the rest of the students and I rarely saw any of them let alone know their names.

I don't know if that person would have accepted this.


In looking back on our AFP test results I think there should have been some red flags raised. My OB during my pregnancy was in a group of 6 doctors. I saw a few of them throughout my pregnancy due to my doctor being out often dealing with some family emergencies. At the routine appointment following the screening I was told that the results were "normal" and it was never discussed again. At our "big" ultrasound I was around 20 weeks into my pregnancy and all of his limbs measured slightly short - around 18 weeks. I have learned with pregnancy there is about a 2 week 'give-or-take' cushion so his limbs measuring 2 weeks behind was not cause for alarm. At my postpartum follow up I met with the doctor who delivered Zach. The one who after Zach was born said there was no way he had Down syndrome. I told him that the tests confirmed that he did in fact sport the extra chromosome and he pulled out my AFP results and said they were around 1 in 350. How that wasn't an elevated result is beyond me? Based off my age (25 at the time of the test, 26 when he was born) "normal" should be around 1 in 800.

Begin rant
Personally, I think the AFP screening is a huge waste of blood (and I told my OB that when I was pregnant with Hannah). I strongly urge everyone I know to not waste their time on that test. I have heard of so many people getting elevated risk factors, stressing out for nothing, all for their baby to have the correct number of chromosomes. I have never heard anything good come of this screening.
End rant

Anyhow, my theory is that with everything going on with my doctor, something slipped through the cracks with my results. Or maybe some higher being knew how much I needed Zach and knew that our plan was to not know until birth.

Down Syndrome Awareness Month!!

In honor of Down syndrome Awareness Month I am going to try and blog everyday. Blog about DS. Zach. How it has effected our lives. I may have a guest blogger or two. I may post about short little conversations between Zach and I. I may just post a picture. But my goal is to share as much as possible with people about Down syndrome and the joy it has brought my family. And maybe learn something I didn't know along the way...

Stay tuned...