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.
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.
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 reecesrainbow.com. 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 SIGNIFICANT RISK, PLEASE ADOPT ME SOON!! 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!
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.
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!).
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!
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 notnecessarily 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:
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!
My name is Elena, and I am a 36 yr old mother of three fantastic kids, Sam 8, Sophie 5, and Sylas born April 22, 2009. I began this blog when I was pregnant with Sylas, shortly after finding out about his sweet extra 21st chromosome. My husband and I have been married over 12 memorable years. I am mostly a stay at home mom, but I work occasionally to keep up to date with physical therapy and my specialty, lymphedema therapy. I am guessing that my next passion will be learning about the pediatric realm of P.T, but likely I will be on the other end as a client's mom.
I enjoy gardening, baking, looking for sea glass with the family, ...ect. and learning how to do this "blogging" thing. I feel blessed with everything in my life.
The Big Sister
The Big Brother
2008 Christmas Family Picture
Baby in Belly!
Baby at 27 weeks!
Baby looks very similar to u/s pictures done at 20 weeks when we found out about his "enhanced" chromosomes. He looks a lot like Sam as a baby.