Monday, October 5, 2015


Since October is Down syndrome awareness month I spend more time thinking about Down syndrome that I do any other time of the year.  Specifically I have been thinking about when we found out Riley would have Down syndrome, his birth and those first weeks, months and year.  The post below from 2009 sums it up well. 

 October 2009
This last week I attended a playgroup with a handful of moms that all have children with Down syndrome.  We all have drastically different stories,  personality,  faith and kiddos.  We were all chit chatting and sharing our stories and stories of our kiddos and one of the mom's busts out with  "I wasn't disappointed that my baby has Down syndrome....  were you?"  Well I immediately get defensive and I'm not even sure why.  I guess the adjective disappointed is one I never want to use when I speak of either of my kids.  I've used a million other adjectives to describe how I felt but I guess scared and angry have topped the list.  I'm not really sure why those adjectives seem any better to me, but I've been thinking a lot about this conversation, my reaction and the word disappointed. defines the word disappointed as-  To fail to satisfy the hope, desire, or expectation of.
So I guess the answer really is Yes,  I was totally and completely disappointed when I learned that my unborn son would have Down syndrome.  I had a picture in my mind of a sibling for Rex that he would be friends, playmates and confidants with as he grew older.  A family that he would have long after Justin and I were gone from this world.  Rex was 4 when I pregnant with Riley and I pictured another little boy running, wrestling and playing catch with his dad. 

I can honestly say that before Riley I new no children with Down syndrome and had very very  limited experience with anyone that had disabilities.  So, when i was told that Riley would have down syndrome I didn't know what to expect and with the unknown comes fear.  Throw in some additional ultrasounds and a Dr with zero bed side manner or good sense and I had some huge fears of health issues way more scary than Down syndrome.  All I could think of was that while we thought Rex would be gaining a sibling really he gained a life long responsibility. 

Fast forward to Riley's birth and all of the scary health issues were erased and we had this beautiful baby and it was so much easier to picture all of the things that Riley would be able to do.  He would be able to run and play and giggle with Rex.  (little did I realize just how much wrestling there would be)  In that instant when he arrived into the world Riley erased my disappointment.  I do still have a healthy dose of fear but it is a different type of fear. 

I have fears for both of my boys.  I worry about how the world will see them, and if they will be accepted for who they are.  I'm pretty sure that every mom worries about her boys.    I worry that they won't listen to the lessons that we try to teach them...  will they be respectful,  will they behave at school, will they remember to put on clean underwear and socks if I don't tell them every single day,   will they love to read or just love kicking the soccer ball......see the list goes on and on.  Wow the being a mom stuff is hard work. 

Fast forward to October 2015 and it is amazing how when you talk to someone about Down syndrome it can take you back to those first moments with a clarity that is stunning while at the same time you can put the filter of almost 9 years of being Riley's mom over it and becomes more clear.

As parents we all have our fears matter how many chromosomes our children have.   With each stage that both of the boys get to we set one set of concerns behind us and hit another set head on.   The older Riley gets the less those original hurts seem to burn but there are certainly lots of extra concerns that just never go away.   

 You'll have to come back and keep reading this month as I jump into those but for now enjoy these. 
Riley and Roxy October 2015

Sunday, October 4, 2015

Just Like You

The most important fact to know about individuals with Down syndrome is that they are more like other than they are different.  ~National Association for Down syndrome~

Saturday, October 3, 2015

Little updates

Yesterday I received an quick update from Riley's teacher that totally made my day.  week. 

Look who aced his 4th 3rd grade spelling test, in 3rd grade, and is multiplying single digit numbers using ENY (Engage New York) And his interactions with his peers have become so much more appropriate.  

He was able to pick a prize for earning 25 PAWS tickets in 1 week.  I love that he picked a stationary set.  Riley loves to make cards and signs for people. This prize is totally him and boy did he earn it this week. 
 Lincoln Heights Jaguars show their P.A.W.S. wherever they are:

 Put Safety First
 Act Responsibly
 Work for Success
 Show Respect and Kindness

Quick updates like these fill my mommy gas tank.  I love that he is having so much at success and has such an amazing team of people supporting him.  He is totally loved and challenged at school this year by his ENTIRE team. 

Friday, October 2, 2015

Groups of......FRIENDS

After the train wreck of 2nd grade everyday is still a bit shocking to me that Riley is having such a great start to 3rd grade.   I have been excited that he has homework.  Its similar to the other kids... but not the same.  It is perfect for Riley and he actually loves it.  He has done a complete turn on me and is absolutely loving math.  Not sure what happened with that but we are just rolling with it.  He picked math to do first each evening this week.  He is working on multiplication concepts.  He can read a simple equation and tells you that 4 x 5 =        is  4 groups of 5.  Then he draws his boxes in his groups and counts the total.  I may have thought his special ed teacher was crazy when she suggested that he had the beginning concepts of multiplication.  Good thing she's the teacher and I'm not.  

The first night he came home with math I started giggling as he read the problems.  I of course made it worse by videoing it but seriously this is good stuff. 

If you don't get the why I thought it was so funny you need to watch friends.  Specifically the clips below. 

You better be laughing.  Seriously not sure if we can be friends if you aren't laughing.  My philosophy is that it is always better to laugh and you'd better laugh when you can.  Sometimes you have to pull out the laughs to get through the hard stuff.  So I'm filing this away in the great laugh file.

Thursday, October 1, 2015

Down Syndrome Awareness 2015

I didn't plan on participating in the 31 for 21 Challenge this year but I had some special inspiration this week so hold on to your hats my friends October is bound to provide some entertainment.   Again this year I"ll post each day in the month of October in honor of Riley and that  extra 21st chromosome. 

Hard to believe that this kiddo will turn 9 in November.  Those first months and years were scary and crazy and amazing all wrapped up in a hormonal emotional crazed bow.  I could barely process the fact that I had a child with Down syndrome much less think past those first days and months.  

Fast forward 9 years and I sat at the table helping Riley with his homework tonight.  He is learning how to multiply.  You read that correctly.  He is learning multiplication!!!!   That is certainly not something I ever could have imagined before.  

As we travel through the month October I'll share information about Down syndrome, myths and truth, and I hope you will find that Riley and our family is more like yours that you ever imagined.  We may have a snitch more fun and likely more trophies than you so join us as we laugh our way through the 31 for 21 challenge. 

Riley loved his walk down the red carpet at this year's Step UP for Down syndrome walk.  He enjoys a good trophy!

Friday, October 31, 2014

Greatest Hits

You didn't think I was going to waste your homework did you? I think the list of 21 is the perfect way to wrap up this long month of 31 for 21 Challenge. While tomorrow we all move on to other awareness months and the next challenge in our world Riley doesn't get to slip off Down syndrome. He works through those challenges on a daily basis. Sometimes he's so good at dealing with the challenges we all forget there are any but some days he wears them like a badge of honor and the entire world is going to know he's having a hard time.
Thank you to all of you who have been reading along and who always support Riley and our family. It truly does take a village and man are we lucky to have such a huge and amazing village.  Typing up this list has me totally laughing down memory lane.  He has made you all do some funny things or said some hysterical things to you.  I feel like this entire month has been a Riley's greatest hits countdown and he is certainly a funny funny boy.  
Here is the 2014 List of 21 Fun Riley Memories

  •  Riley loves people and really loves names and connecting people by family. I can't count how many people have comment how much they love that overtime they see him he says hi - you Jake's mom or you Johnie's dad. 
  • I remember Riley saying "you my teacher !" even when I was just a substitute. But my favorite thing to do with Riley was race with him to line from recess ! I also loved reading with him in Monica's room ! Miss his smiling face!
  • One of my favorites is when I walked into the football game and he yelled, "Hi Liz! You wanna sit with me? (Pause) I have M&M's....." Nothing like a chocolate bribe
  •  His love, kindness and compassion for everyone he meets. The weaker the person the larger Riley's heart grew to envelope them in ways.
  • The smile on my face when he wanted to play let's make a deal to avoid work.
  •  The teacher is nice - lies!
  •  Hearing aids in the toilet, in the sink, in his pocket.
  • OMG you stink!
  • "Sarah wipe my butt!, Sarah wipe my butt!"
  • Chasing him through knee deep snow, while wearing shoes, so he could hide up behind Mary. After hauling him down, he informs me his socks are wet!
  •  Eyes on You Cranky!
  • Watching him knock on the door to the chicken coup asking if they were home. 
  • When he was the Little Drummer Boy in preschool and he spotted me in the audience and yelled "GRAMMA"
  • I love the times he has demanded I come to his room to read books. 
  • He is the only one who can swim vertically with his eyes wide open even under water! 
  • This last summer when we visited Riley and I were home alone and Riley convinced me to jump on the trampoline. I have no idea what possessed me but as you know Riley is convincing. It's a lot harder than I remember but maybe it has something to do with being 63! Anyway I landed a bit hard and Riley stopped jumping, looked concerned and asked, " Gramma are you alright?" 
  • Watching him squeeze under the church pews and kneelers to sit with the Kelly Family.
  • How he called Eva EBA for so long. 
  • How gentle he is now with Colin
  • How he took Kaitlyn on a date and brought her flowers.
  • I really love what he taught me and that he has brought you into my life as a friend.

I certainly am constantly learning from Riley.  Sometimes I am a better student than others.  Riley has brought some amazing people into our world.  I am a better person for the friendships I have.  

Thursday, October 30, 2014

Thru the Years

Riley is a big believer that costumes are year round fun but here are some of the Halloween highlights.  I wish I could find the pictures of Rex in the duck costume.  Shouldn't the first kid be better documented?  Poor kids before digital cameras....  I'm sure Rex is relieved.

Ella, Hunter, Rex and Riley