Down syndrome Awareness Month Catchup 1

As part of Down syndrome Awareness Month, I have been sharing something about Matthew or Down syndrome every day.  Most of my posts have just been little snippets on Instagram or Facebook, so I thought I would put all of them here for those of you who aren't on social media.  Thank you for caring about Matthew and following along with his journey!

October 4

"I want a world where every single person can look at someone with a disability and see the human being, not the difference."  
This quote comes from a mom of two boys with Down syndrome in her blog post titled "Why Do I Post So Many Pictures of My Kids?" This sums up one of the major reasons I have been so open about Matthew's life and journey. I hope when you look at Matthew, you see a precious baby full of life and possibilities, and not just Down syndrome.

October 5

Before Matthew's diagnosis, I was unaware of all the proper terminology and was guilty of some of the things listed below. To an average person, it may seem like it doesn't matter. But to a family whose child is labeled all the time, it is important to show that their child is a human first, and their diagnosis is secondary. People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's." Matthew is a child with Down syndrome, but he is his own little person first and foremost.

October 6

As part of this special month I want to share pictures of Matthew with each of his brothers.  They are his biggest fans.  I am starting with Luke because he loves babies!  One time when I asked Luke "where did you come from!?" He replied, with a completely serious straight face, "from sharks."  Since then we have joked that all these crazy boys came from sharks.  And Matthew has the hat to prove it.

October 7

A person either has Down syndrome or they don't. There is no such thing as mild or severe Down syndrome. People with Down syndrome, just like any other person, have their own strengths and weaknesses. Using the terms "high functioning" or "low functioning" is frowned upon.

October 8

At my 20 week ultrasound my doctor saw several Down syndrome markers, one of which is a short nasal bone. We had a 10 day wait between that ultrasound and receiving the results of our genetic testing. I analyzed this ultrasound picture for 10 days and convinced myself that his nose was perfect, whether he had Down syndrome or not. I am thankful for that ten days of not knowing for sure. It allowed me to grieve and have hope, but by the end of it my heart was filled with love and acceptance for this little guy. He will be the person that God made him to be, and he is perfect just the way he is.

October 9

 Matthew is 5 months old! His biggest accomplishment over the last month is getting off oxygen! He loves being outside, chewing on his hands and sitting up like a big boy (although not on his own yet). He likes to have one-on-one time with Mommy in the middle of the night. We love this sweet little boy to the moon and back!

October 10

These are two of my favorite little markers of Down syndrome. Matthew has a "sandal gap" between his big toe and second toe. He also has a curved pinky finger which is know as clinodactyly. Just because a person has one of these characteristics does not mean they have Down syndrome, but they are very common in people with Ds.

October 11

Matthew is a little string bean! There is a special growth chart just for kiddos with Down syndrome. On a typical growth chart, Matthew is off the chart small. On the Ds chart, he is around the 20th percentile, which is about right for a Szafranski boy. People with Down syndrome are known to have short stature, and their arms and legs are usually shorter than typically developing individuals. Matthew just weighed in at 11 pounds!