Thursday, October 8, 2015

Story Telling Genes

Most of you know already that  Riley is a story teller.  I think he has been gifted this gene by his Grampa Bill.  He now affectionately refers to Grampa as Cranky.  Only Riley could get away with this stuff.  

They have been sharing stories from the beginning
Nothing like a little 2nd hand smoke to brighten your day. 
Stories certainly are better during a tractor ride

 Story time with Toni dog snuggles is extra fun.

 Even Rex gets in on the fun but he is often to shy to share his stories with just anyone.  Riley on the other hand will share them with anyone including the stranger he just introduced me to on the elevator. 

Riley's story telling genes have continued to develop and he can spin a tale with the best of them.  Today I gave him my phone as we were driving to pick up Rex from school.  He is pretty into haunted houses and creepy stories right now.  So sit back and enjoy a couple of good stories. 

video video

Wednesday, October 7, 2015

Best of Friends!

 We have joked for years about Riley and Ella having an arranged marriage.  Have no fear the wedding is still on.    Kacey keeps telling me that I have to keep Ella through the teen years before she'll let the sweet couple live with her after the wedding.  I'm not so sure this house can handle a teenage girls so I am still negotiating that deal. 

These two highly spirited and hysterically funny kids have the purest most honest friendship ever.  Ella and Riley both live life full speed ahead.  They don't know how to sensor their emotions like adults do so what you get is exactly what they are feeling.  Thankfully now it is a whole lotta love.  There is usually lots of excited voices, jumping around and big hugs when they first see each other.   Since they have lots of interests in common like singing, dancing and showing off they have lots of things to play but they are certainly not afraid to let the other know if they aren't interested or if the other isn't playing "correctly".  

 Everyone should have a friendship this honest and fabulous!

And just because they are too cute here are a few through the years. 

Tuesday, October 6, 2015

Riley Expert

Often I think that unless you have had complications of some sort or a child with special needs you really don't understand what a parent goes through when trouble arises at birth.  Often when people ask about it I openly say I was scared to death but I don't really talk about why.  What in the world is so scary.  Especially when people see Riley today.  He's a pretty amazing kiddo (ya I'm bragging again) and if you know him now you really wouldn't find anything scary about it.  You'd probably just think I was the mom who needed to get over it already and celebrate my amazing kiddo.  

The truth can be ugly and  uncomfortable so prepare to get really uncomfortable for a few minutes because I had some ugly things running through my mind 9 years ago.  Before Riley was born I was afraid of the health conditions he might have.   We had a few concerns in addition to just Down syndrome and honestly our biggest concern before Riley was born was how his brain was going to develop. I'm not talking about if he'd be good student I mean I pictured a person not only with multiple physical disabilities but a person that couldn't control their own body, couldn't communicate and didn't appear to be able to understand or participate in the simple day to day life going on around them. A person who required 24 hour care and that wouldn't be able to join in our family activities even in the simplest form.  Now I know that that scenario  is very very unrealistic and honestly I've learned more about how to appreciate life differently.  The people that back then (Before Riley) I didn't think found enjoyment in life I now fully believe  find joy and love in life.  It is amazing how when we don't know about something we become scared of it.  My brain especially likes to run with the worst case scenario.    I should remind you all that I knew prenatally that Riley would have Down syndrome.  I had several months to conjure up the worse possible mental picture  before I had a sweet baby to snuggle.  I like to think that for every snuggle you get your brain cells line back up in a way that allows you see more clearly.  I spent those months before Riley arrived as a neurotic mess.  I had a picture of a child that that couldn't walk, talk or feed himself.  How in the world was I ever going to care for this baby?   I wasn't qualified to take care of this new life that would need so much.   I was angry at God and most everyone else for a while.  Seriously if one more person told me God only gives special babies to special people I might have landed in jail for assault.  As it was I need to apologize to the person that said that to me and I asked them what I did that was so f'n special.  I didn't feel special I just felt overwhelmed and inadequate.  

When I was told that Riley had Down syndrome it was like a rug being yanked out from under me.  I was suddenly not allowed to live in that naive world where you think that growing and birthing a baby is the simply most natural thing on earth to do.  In theory it is super simple.  In practice it is nothing short of a miracle every time a baby is conceived, carried to term and arrives in this world healthy. I had rolled those dice once and had Rex.  I had the miracle.  A healthy pregnancy that led to a healthy baby and with that miracle I took fall of it for granted.  I didn't know that the fact that Rex arrived in this world with the ability to suck and swallow while at the same time continue breathing was a miracle all its own.  Riley spent 2 weeks in the NCIU learning just that seemingly simple skill. 

I was also very specifically scared of Riley not being accepted and valued as a person.  If his own mother was scared how could I expect others to react to him.  What would his relationship with his brother be like.  If he can't talk how will he ever be independent.  Will everyone always assume he isn't smart because he doesn't speak clearly.  The list goes on and on.  And on and on some more.  

When you have no real experience or knowledge of people with disabilities and specifically Down syndrome your mind can run with the unknown.  What if my child can't____ .  You can fill in that blank with almost anything when you don't have a frame of reference.  That is why year after year I continue to write about Down syndrome and Riley and our life.  I don't want people to pity me or to feel sorry for our family that we have a child with Down syndrome.  I want people to understand that having your emotions run wild is completely typical and you need to allow your self to have all of those emotions.  You are not alone.    If by chance by knowing Riley or even reading about our family your panic is a minute less than mine that sharing the ugly truth is completely worth it.  
I'm not really sure when things got to be less scary.  There wasn't a magical moment when the clouds parted and the heavens sang.  I did find my faith and it helped.   I found strength in my family and friends that have loved me through all the ugly moments.  There have been some ugly ugly moments. I made new friends that are walking a similar path and have found strength in numbers.  I found my sense of humor and my new friends have a sense of humor too.
Most importantly I let Riley be the guide.  I stopped thinking about Down syndrome and focused on Riley.  I don't need to be an expert on Down syndrome I only need to be an expert on Riley.   
In case I was too wordy here is the picture version of this post.  

Don't be scared mom.  (he's even telling you in sign language)
How can you doubt these eyes mom. 

I told you mom.  I've got this.  It's cool. 

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.