Thank you to everyone who has taken the time to read my blog. If you feel inclined to comment on a post, just click on the "comment" link at the bottom of the post. I would love to hear from you! If you are new to my blog, check out the archived blog posts listed in the left column.

Tuesday, March 31, 2009

If you have a few minutes, click on the videos below. One of them is an interview with John C McGinley from the show "Scrubs". John has a son with DS. He speaks about why the word "retard" is so hurtful and why we should stop using it in everyday conversation. Personally, there have been many times when I have said to myself "oh, I am so retarded" because I was clumsy or hopeless in a situation. I actually started saying it to myself the other night, and I immediately stopped and thought about how unknowingly hurtful I could be to others if I actually spoke it outloud. According to the Special Olympics website, the word conjures up a painful stereotype of people with intellectual disabilities. It can hurt, even if it is not meant in that way.

Monday, March 30, 2009

Warning...big belly!

Only about 5 weeks left, so I thought you may want to see how humongous I am. I never took pictures like this when I was prego before. Instead I stayed covered up (maybe because it was sooo cold in MN!). While Sophie loved getting her photo taken, Sam wanted to do Kung Fu moves. Sorry, I left those shots out of the slide show.

Wednesday, March 25, 2009

There is an organization called Reese's Rainbow in Maryland that promotes and facilitates international adoption and rescue of children with Down syndrome and children with other special needs. Today I read a posting on a DS forum, from a mom that is currently adopting a baby from Russia that has DS. She wanted to bring attention to a little girl who is currently being transferred from her orphanage to a mental institution as she is now 4 yrs old. Once the children are in an institution, their mortality rates are quite high.
Here is the info from the posting and a link to Reese's Rainbow:
This little girl really needs a family to commit to her, badly. Please have anyone you know that might be interested in adoption know about her. She can be found on She is available for international adoption. costs are 24K including travel, but 6.5K has already been raised as a grant for her adoption.

RuslanaGirl, Born January 21, 2005
Ruslana is a beautiful little girl. She has brown hair and deep brown eyes. She is already 4 and facing imminent institutionalization. The director will not be able to hold her at this point, so you would be adopting her from the institution :(
Ruslana has particularly low tone, and has not had therapy, so she is still not walking. She is very close though, and gets around quite well! She is described as a very happy and affectionate little girl who loves to play with her dolls. We all know that with therapy and focus and a loving family, she will blossom and show the world just how amazing and resilient our children really are!
She can be found under "Sponsor a Waiting Orphan", then click on "Most At Risk Children- age 3-5".

Tuesday, March 24, 2009

Last Saturday, March 21st, was celebrated as World Down Syndrome Day. The date 3/21 is significant for the 3 copies of the 21st chromosome. Fifty years ago, Professor Jerome Lejeune discovered the extra copy of the 21st chromosome which causes Down syndrome.

Thursday, March 12, 2009

Today I had another ultrasound to check for growth and heart complications. He is smack dab center of the growth chart, so the doctor is not worried about low birth weight. Everytime I see this doctor he comments on how babies with DS tend to be hypotonic (floppy), which brings me back to my friend telling me that he would be "relaxed, hang loose like Hawaii". He is 4 lbs, 5 oz if I remember correctly. His femur(leg)length is lagging behind which is typical for babies with DS. All is well with heart and other organs, thank goodness! Baby had a grimace on his face and was trying to stick his hand in his mouth. He looks just like the last u/s picture, just a bit more meatier! Must be from the banana split I had a week ago. It was sooo good, I have been dreaming about banana splits (I also craved them during my last pregnancy but never got one!).

Tuesday, March 10, 2009

Update on the kiddles:

Sophie just started horseback riding lessons on Sunday. She did a fantastic job and knows how to cue the horse to go, stop, turn left and right, and trot. I hear so many people talk about how they were bucked off of a horse when they were young, never to try it again. I guess my ignorance and zippo knowledge about horses has allowed me to feel ok about Sophie trying this. Sophie's teacher is wonderful and has a daughter Sophie's age who also rides. She also learned how to groom the horse.

Sam continues with his swimming. He had a swim meet a few weeks ago and was really happy with how he swam. He improves his score by 2-3 seconds everytime. He was so embarrassed at swim practice the other day because his tight nylon swim shorts had sprung a hole in the backside, of course. That darn chlorine!

Thursday, March 5, 2009

Smiles, songs for a granddaughter who is just right - The Boston Globe

Today I read a column in The Boston Globe by Beverly Beckham. Here it is:

Smiles, songs for a granddaughter who is just right
By Beverly Beckham
March 1, 2009

Five hours in a car. It's a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout.
My granddaughter was happy, listening to Rodgers and Hammerstein's "Cinderella," and singing along. She ate chicken fingers in a nice restaurant overlooking the water, then she was back in her car seat, singing again.
She and her mother and I were on our way home from New York City. We had taken her to see her 19-month-old cousin. We had been to parks and museums, bookstores, and toy stores. We had walked and shopped and eaten and played.
I was thinking about this, about what a great kid she is, when I walked into my house and read the cover of the Boston Globe Magazine, which had come while I was away: "Pregnancy and Down syndrome; the agonizing decisions." Lucy has Down syndrome, so I sat and read it.
I wish I hadn't. Its negativity made me question reality. Did I invent this perfect week with my grandchild? Lucy's smiles and her songs. Lucy reading books and running through Central Park, raising her glass of milk and saying "cheers." Lucy remembering to say "please" and "thank you" to every person who held a door or brought her food or handed her a ticket.
The article was about two families who were told that their unborn babies had a 1-in-6 chance of being born with Down syndrome. One couple continued the pregnancy, the other aborted. As background, the author, Dr. Adam Wolfberg, wrote that Down syndrome "results in mental retardation and often a host of medical problems." That prospective parents use early prenatal testing to identify a baby with the syndrome "so that they can prepare to raise a child who will have profound medical, cognitive, and behavioral challenges." And that a determination of Down syndrome is "like a lottery no one wants to win."
The words Wolfberg chose to use stung not just because they make sweeping generalizations. But because, before Lucy, I would have believed them.
You see things one way when you're on the outside looking in. But when you're on the inside looking out? All you see is a child.
Our family had hoped for a baby without extra challenges. Doesn't everyone? When Lucy was born, she wasn't healthy. She had holes in her heart. She needed surgery. And she had Down syndrome.
Negative words decimated us. You play them over and over in your head and you worry and watch and wait. And you miss so much that is good because you are a wreck anticipating disaster.
And then you stop worrying. You stop projecting and imagining and you look at this child in your arms, whom the world deems inferior, and you think how wrong the world is. And how perfectly right she is.
Lucy listens as Julie Andrews sings. Then she belts out in her raspy child's voice what is true for Cinderella but even truer for all children like her. "Impossible things are happening every day."
Beverly Beckham can be reached at
© Copyright 2009 Globe Newspaper Company.

Tuesday, March 3, 2009

When we found out about our baby's diagnosis, we received a lot of love and support and we also had many people say "I don't know what to say". I thought about this and I am not sure I would have known what to say either if the situation was reversed. When I was doing internet research, I came upon a website that addressed this specific issue. The "Things NOT to say" are not necessarily things that upset me personally, but I found it helpful for myself to be aware in case I am speaking to other new parents. (The 2 things I would add is: 1) Beware of saying "I wonder what could have caused that?" This gives speculation to the idea that there is something that the parents have done to cause or prevent the Down's Syndrome. 2)Avoid talking about all the "challenges" the parents will face. That is negative and depressing for new parents to hear. Yes, of course there will be challenges, but remember all kids have their challenges!) Ok, Here it is if you are interested:

Monday, March 2, 2009

As many of you know, my sister in law Jen is expecting a baby girl just 3 weeks after our baby is due. I think it is much more than a coincidence considering Jen's last baby was born almost 18 years ago! We seriously did not plan this, we actually were both "not trying" that month. Jen and I share the same birthday just a year apart, so perhaps we should not be surprised that this happened. I feel so fortunate that we will also share being mommys together!