Pics by Sis

Ruby's sisters love to take pictures of her.My daughter Elizabeth took these pictures when we were at the car-wash and I was vacuuming out our van.In some of the photos you can see Ruby's serious face.She was wondering what all that noise was.

She Amazes Me

Tonight I made pancakes for supper.Sometimes we like to have breakfast for supper. When I was done making the pancakes I tapped my big metal spoon against the top of the metal bowl,still half full of pancake mix,it made a loud noise.Ruby, who was sitting nearby in the entrance to the kitchen,looked up at me and clearly said,"What's that?" She amazes me sometimes with how much she understands and how much she is just like any 4 year old child.
 I was so excited just a couple of weeks ago when I saw that she had colored all over the side of my refrigerator and she left her "Artwork" on my living room wall and down the hallway wall.I was excited because I remembered her oldest brother doing a similar thing at four years old,he colored all over the wall in my hallway. When I saw Ruby's 'artwork' for a brief second I felt a little irritated,then I started laughing and smiling because I realized she did what many other four year old children do.
 I'm so thankful the Lord gave her to me.She makes me appreciate the small things,she gives me patience.

Facts

One of the Myths about Down syndrome is that the person with Down syndrome will be a burden on their family.
 The Fact is people with Down syndrome bring understanding,patience,compassion and joy to each member of the family.

October is National Down syndrome Awareness Month

October is National Down syndrome Awareness Month.

 Ruby is just like any other child.She enjoys pretend play.

My Little Ham / 31 for 21 Day 5

 Ruby loves books and she loves to be read to.I was trying to catch some natural pictures of her sister reading to her but almost everytime I got ready to snap the shot Ruby would look up and flash me a grin! Stinker!

Laundry (31 for 21)

Ruby likes to follow and watch me when I'm doing the laundry.Since she was about a year and a half she has loved to throw all the laundry out of the baskets.Thank goodness she now likes throwing it all back into the baskets! In the last couple of months she has learned to say all of her siblings names very clearly and she now enjoys telling me whose laundry it is that she is throwing.Today she took one of her brothers shirts out of the closet and signed and said,"clothes!" Oh,my,I love that girl.

World Down Syndrome Day and a Birthday

Today is World Down syndrome Day.
World Down Syndrome Day takes place on 21 March every year. This date (21/3) represents the 3 copies of chromosome 21, which is unique to people with Down syndrome.








Here is my Ruby.

Make an on-line slide show at www.OneTrueMedia.com

 

Today is also my son's 6th birthday.

 

It’s National Down Syndrome Awareness Month - WEGO Health

Take a look at what Amanda had to say on WEGO Health about National Down syndrome Month.I think she did a great job in mentioning all the important facts about Down syndrome. She also happened to mention my blog in the links at the end and I enjoyed being called a Down syndrome Activist!
Thanks for the shout out Amanda!

It’s National Down Syndrome Awareness Month - WEGO Health

Down syndrome Awareness Videos

When Ruby was born she had to stay in the NICU for two weeks. During that time, in between visits to see her in the hospital,I would get online and search for anything I could find about Down syndrome.Today I'm going to share 2 of the videos that I found on YouTube.These videos were a comfort to me.

Wordless Wednesday

The Creed Of Down syndrome

31 for 21 day 4

When Ruby was born I didn't know much about Down syndrome.I knew that Ruby might have heart defects and would have a mental disability.I was surprised and discouraged when I started reading about all the health problems that are possible.Here is a list of some of the health problems that are possible:

Heart defects
Leukemia
Respiratory infections(this used to be one of the most common causes of early death) Thank you Lord for antibiotics!
Gastrointestinal tract obstruction
Hearing loss
Eye abnormalities (almost 70 percent  have some type of eye problem) Early eye exams are very important!
Severe constipaton
Hirschsprung's disease(absence of nerves in the colon)
Gastroesophogeal reflux
Orthopedic problems
Seizures


Some facts about Down syndrome
Down syndrome is really the only trisomy compatible with life. Only two other trisomies have been observed in babies born alive (trisomies 13 and 18), but babies born with these trisomies have only a 5% chance of surviving longer than one year.

In 90% of Trisomy 21 cases, the additional chromosome comes from the mother's egg rather than the father's sperm.

Down syndrome is the most common genetic disorder caused by a chromosomal abnormality. It affects 1 out of every 800 to 1,000 babies.

Down syndrome was originally described in 1866 by John Langdon Down. It wasn't until 1959 that a French doctor, named Jerome Lejeune, discovered it was caused by the inheritance of an extra chromosome 21.

31 for 21 day 3

My Little Candle Holder

Last Saturday I went to a pottery class and learned how to form a little clay pot with my hands.At first I wasn't really sure what I wanted to make and then I decided to make a crayon holder for my kids.So I made a little pot that looks like a mug without a handle.
Today I went back to the class and took my little pot that I had burnished at home.I put a layer of  baby oil and then a finish called terra sig and  began to rub it to a shine.While I was rubbing and shining I was talking to the other ladies at the class and then realised,uh,oh,my pot just broke.I looked and a u-shaped piece had broken out of the side.My heart fell a little as I thought about the crayon holder that wasn't to be and then I thought well it will make a nice candle holder.So I put some terra sig on the broken place and rubbed it to a shine and now it will be put in a kiln to be prepared for Friday when we will be having a pit burning for our pottery.I'm looking forward to seeing how it turns out.

My little crayon holder ,turned candle holder, made me think how God can use us even when we are broken ,and  how His light can shine forth from us to shine upon others.

Some may see my daughter Ruby as a broken pot,not good for anything,but God has formed her and finished her and she has a beautiful light that shines from within .Her light shines out and brings beauty and joy to our family and to others who choose to see.

October Down syndrome Awareness month

Grab This Button

October is Down syndrome awareness month and I will be trying to blog every day this month to let everyone know how wonderful children and adults with Down syndrome are.I hope my blog already does that but for this month I will be taking the challenge to post something every day.

Humans have 23 pairs of chromosomes.People with Down syndrome have an extra chromosome on their 21st pair.That means they have an extra chromosome in all the cells in their body.This is what causes the many different characteristics of people with Down syndrome.The word chromosome is a Greek word,"chromo " means color and "soma" means body.

                                            Karyotype of someone with Down syndrome

LEADER OF THE BAND: A young man with Down syndrome never misses his chance to be a modern-day Music Man

Dressed in a red Badger shirt with a baton in his back pocket, Ben De Young headed to the park early on Tuesday.


He had a concert to conduct.

But first, chairs needed to be set out and music stands in place before a few hundred people showed up to hear music and eat pie.

Ben's been making this trip from his parent's home on Waupun Street to the town square in Friesland for most of his life. His mother, Martha, would say before he could even walk.


LEADER OF THE BAND: A young man with Down syndrome never misses his chance to be a modern-day Music Man

A Decade Cleaning Tables at the Bowling Alley

Arthur Fortaliza cleans tables and chairs three mornings a week at Mira Mesa Lanes. The 43-year-old with Down syndrome is a mainstay there.
Here's the link to the article:
A Decade Cleaning Tables at the Bowling Alley


I like to find and read articles about adults who have Down syndrome,to find out what type of life they have.I have a fear of dying and not being here to care for Ruby when she is an older adult.The article above mentions that this man's parents have died and that he lives with his brother.I hope that someday if Ruby needs them her siblings will be willing to care for her.My children and I have discussed this a little and have talked about how Ruby has enough siblings to help divide up her care if my husband and I die or unable to care for her.The siblings could take turns and each have her for a month.Just a thought.
I know that ultimately God is in control.

Beautiful

World Down Syndrome Day 2010

Down Syndrome International has officially earmarked 21 March as World Down Syndrome Day. The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. Commemoration of World Down Syndrome Day started on 21 March 2006.

Wordless Wednesday-Sisters