21 Things About Riley

October 21, 2011 brings the yearly list of 21 things about Riley.  You can find last years list here.  2009s list is here and my original list is here.  Hard to believe this little blog has been around so long.

1. Riley is almost 5 now.  
2. Riley's  favorite food is is chicken.  He wants dinner to be chicken every night.  We call lots of things chicken...  we'll teach him about pork and beef before he gets married. 
3. Riley started wearing hearing aids 3 weeks ago.  They have made a huge difference already. 
4. Riley is pretty much potty trained and is dry through the night too.  This process sent us to the urologist where we discovered his testicles hadn't totally descended. 
5. Surgery to correct #4 will happen in January. 
6. Riley has huge x ginormous tonsils.  The ENT is watching them and the speech therapist has expressed concerns.  I'm guessing the tonsils don't make it through 2012.  I wonder if they will give me a discount for taking 2 kids in at the same time. 
7. Riley loves his new daycare.  He acts like he has been there for years.  When he arrives in the morning he yells "morning Sara!" to his teacher and is off. 
8. Tiny Tim the Turtle song is his current favorite but Riley loves to sing and all kinds of music. 
9. He also loves to sing the ABC's, Twinkle Twinkle  and a ton of more pop stuff like I'm Yours by Jason Mraz, songs by Pitbull and Katy Perry.  He does his best singing in the car. 
10. Riley is a HUGE Elmo fan.  He loves all things Sesame Street but Elmo is the fav!
11. Riley loves books!  One of his current favorites is Ten Little Ladybugs
12. Riley adores his big brother.  Rex had still make him laugh faster than anyone else in the world.
13. Puzzles are Riley's favorite app on my IPhone.  Its amazing to watch he moves the pieces around and drop them into place.
14. Angry Birds is another favorite app.  He has a hard time shooting the little bird the right direction but he loves it!
15. Riley doesn't like to walk anywhere.  Running is more his speed. 
16. Riley is going to be Wood for Halloween.  We borrowed a pair of cowboy boots from our friend and my mom is sewing a vest.  He is going to rock this one. 
17. Riley loves to cook.  He helps me count the eggs and stir.  He is very handsome in an apron.
18. Riley loves to play with his friends.  I can bribe him to do almost anything with the promise of getting to play with his girl friends, or Braden.  HMM now that I think about it I think I need to find him some little boys to play with.
19. Play dough is one of Riley's favorite things to play with.  Typically he makes snakes!
20. Farm animals are always at the top of the list for playtime fun.  He loves to build barns from his blocks to put his animals in. 
21. Riley is amazing!  He is learning so much at school and has been talking a blue streak.  Its been fun to be able to relax a bit and just enjoy having a 4 year old in the house.  Too soon he will be off to kindergarten. 

Day 21 - 31 for 21 2013

Each year during the 31 for 21 Challenge I have put together a list of 21 Fun Facts about Riley. See the theme -  21 things to go with the 21st chromosome on the 21 day of the challenge.  I'm clever like that.

You can read the previous years here.

So here goes for 2013. 

1. Riley can read! He is getting more confident by the day. 

2. When he finishes something he is proud of he yells " I made it". 

3. Rex is his favorite person in the entire world. 

4. Riley loves a good birthday party. He doesn't even really need a birthday for an excuse to sing he just loves to sing happy birthday! 

 5. He thrives with routine. We talk through the schedule of the day over and over and over.  

 6. He finally grew enough that he can use a booster seat in the car. I wasn't sure he'd ever reach 40 pounds. 

 7. OK Honey! I’m currently Riley’s honey. He loves a good joke and messing with my name is a pretty good laugh. It's better than using my name as swear word like he did all summer.  

 8. Riley loves to dance. He is currently taking bib bob aka Hip Hop class. It has been fun but I’m not sure if he will continue much longer. He may be more of a free style living room dance party kind of guy.  

9. Taking Riley to church is entertaining. When he was really little it was more of an aerobic activity and not it’s more of an exercise in not laughing. Thankfully he has stopped crawling under the pew to join the family in front of us and saves the really good antics for school mass. 

 10. Riley has an incredible gift for names. He wants to know everyone’s name. He might ask you to repeat it 50 times but it will stick and then he’s got you forever. 

 11. Once he knows your name he isn’t afraid to use it. When we go to Rex’s football games he knows most of the parents and he thinks they are all his playmates. He often yells at them to sit with us and play. Surprisingly most of them do. You'd never believe how many people stop and play bad guys with him. 

 12. Riley still calls all meat chicken.

 13. Riley loves to take cottage cheese in his lunch box.  He eats it every day for snack. It completely grosses the rest of the family out. 

 14. Riley loves stuffed annimals and could play for hours making them act out things. He refuses to have them any where near his bed when he sleeps. 

 15. Our current bedtime routine includes kisses and dad tucking him in. He then requests me to come check on him. He pretends to be asleep until you wisper I love you then he can't hide his sweet smile. 

16. Riley loves to go visit Gramma and Grampa on the farm. My dad has to hide the keys to the 4 wheeler, lawn mower and tractor because Riley knows exactly how to start them all. 

17. Riley can't tell you his phone number but he can tell you the 4 digit passcode to my iPhone. 

18. We visited Yellowstone Park 3 summers ago. Riley will still tell you about the buffalo and elk like it was yesterday 

 19. Riley loves chocolate. You can bribe him to do lots of things for a piece of chocolate. The tub of chocolate covered raisens from Costco would go a long way to getting homework done if the rest of the family would leave them alone. 

 20. Riley's laugh is contagioius. He smiles with his entire body. 

 21. Riley is an amazing little man that will continue to teach everyone around him. He offers lessons daily on patience. Thankfully also shares a lot of laughter!!!

21 Fun Facts about Riley

The 31 for 21 Challenge wouldn't be complete without at least one list of 21.  A year ago I wrote a list of 21 Things about Riley......so many of those fun things are still true he's just more advanced at them.  You can find the orginal post HERE.  Hope you enjoy!

1.  Riley is using moving at high speed.  He rarely slows down but you know he really wants to "run" when he throws his shoulders back and his arms pump.

2. Riley idolizes his big brother.  When Rex is gone he misses him and yells for BUBBA when Rex come through the front door. 

3.  Idolizing Rex has helped Riley learn to do many things.  He wants to sit on his trike when Rex rides his bide,  he try to copy Rex jumping.  Who would have thought that being a copy cat would serve him so weel.

4.  Riley is starting to really love puzzels.  He has a colored peg stacking toy that he puts the pieces on the matching colored shapes on the colored pegs.  DON"T try to put them on the wrong colored peg......Riley will tell you about it. 

5.  Riley smiles the majority of the time but he sure lets you know when he doesn't like what you are doing.  He'll break your heart with the silent cry or covering up his face to show you that he doesn't want to see you. 

6.  Riley is able to kick a soccer ball and I'm considering putting him in soccer tots.  Wouldn't that be the cutest thing ever!

7.  Riley will count to 3 with help.  He is good at repeating but often we get two and three all by himself. 

8.  Riley' melts your heart with his big brown eyes and then keeps it with his laugh.

9.  Riley turns 3 on November 30th but is the size of a typical 12-18th month old.  The majority of clothes are 18 month...  cost effective but SO boring to shop for. 

10.  Riley loves music.  He has several songs that he signs with but Twinkle Twinkle is a favority and he sings along. 

11.  Riley's only interest in TV are Signing Times videos.  He has a huge signing vocabulary.  I bet he is around 100 signs.  Now if only I new that many. 

12.  Riley loves people.  He is one of the most amazingly social kiddos I've ever been around. 

13.  I think Riley will have a career in music or some type of performance.  He loves all music and is often found "shakin his bootie"

14.  Riley loves food.  In his toddler class he now sits next to the little boy with food aversions.  He is the peer model for good eating skills.  Ya,  my kid is the class pig. 

15.  Riley is learning to jump.  He screams for MOOOM to watch and then yells UMP UMP while stomping one leg.  He can't quite get both legs up but he knows they should come off the ground.  It is hysterical.  Won't be long before he is a jumping fool. 

16.  Riley loves books.  Especially the touch and feel books. 

17.  Riley is going to be a Tiger for Halloween this year.  Last year he was a duck.  He couldn't walk yet so his super cute costume was wasted in the stroller.  Watch out folks he walks this year and I think he's going to love trick er treaing.

18.  When Riley gets scolded or told no if he doesn't hide his face and try to make you go away he attempts to make you laugh.  He uses all the tricks and squishy faces he can muster to try to make you laugh so you'll forget why you were telling him no. 

19.  When we go to my mom and dads Riley walks in the house and starts yelling for PA.  He's still a bit casious of my dad but he loves his Gramma and PA. 

20.  One of his favorite things he does at PA's house is visiting the chickens.  He often stands at the fence and "talks" to the rooster.    DOODLE DOO DOODLE DOO

21.  Riley is an amazing lil guy that is going to change people's perception of Down syndrome.  He will make them acknowledge him and tell him how cute he is even if they don't want too.  He is knows to say hi to every one we see and if they don't talk back to him he just keeps talking and getting louder and louder until they have to acknowledge him.  Hysterical!!!

21 Things About Riley

Yes, I'll admit I'm a copy cat. Here is my list of 21 things about Riley. Rex is going to help me write it.

1. He has an amazing big brother named Rex!

2. He was born on Nov. 30th 2006 - 4 weeks early - (ask Justin why he will never mop the floor again - no my water didn't break)

3. Riley spent two week in the NICU where big brother and family visited every day. He was kept company by the baseball bear that Rex picked out for him.

4. He babbles and talks all the time and rarely is quiet. Except when he says his cousin Cheyenne's name is a whisper Chey Chey.

5. His favorite snack is gold fish crackers. Complete with the sign and blither blither sound that fish make.

6. Rex tells me that Riley's next favorite food is raisin.

7. Riley loves to wrestle with Rex. They make Grampa very nervous when they do this routine. They roll around and flip and flop but Riley always pops up. It is amazing.

8. Riley's only tv show he is interested in is Signing Times. He loves the music.

9. Riley loves most music. Right now his favorite song is Isty Bisty Spider. He has great hand motions - but you have to sing quickly to keep up with the signs.

10. He loves to "help" me on the computer.

11. Riley can sense when we leave the gate to the kitchen open. He usually goes straight to the basement door when he sneaks in. If not he stops to play with his Leapfrog animal noise maker barn door thingy. Occasionally he sneaks over to unroll the garbage bags in the bottom door.

12. He can also hear us the moment the bathroom door cracks open. He loves to take baths so he is obsessed with getting in there. Thankfully he usually goes past the toilet and moves on to the tub when he sneaks in. If you shut the door before he makes it over he folds himself in half and trys to look under the door. Then you see his fingers wiggling under the door. It is a little like having a cat.

13. Riley has a smile that will melt your heart. There are several versions of it but our fav is the squishy face.

14. Rex can always make him laugh and smile. The current favorite tactic is to flip him upside down and shake him and Riley giggles and giggles and giggles.

15. Riley was born with two syntactical fingers. He had them separated this last May at Shriner's here in Spokane.

16. Riley thinks that Da Da's bald head is a bongo drum. He gets a nice slapping sound from it. Sometimes he also likes to lick the bald head. YUCK

17. He had a great tickle spot under his chin.

18. Riley laughs on command most days. When you ask him if he is a funny boy he laughs.

19. Riley is a wonderful sleeper. He usually is good for 12 hours a night an a minimum of a 2 hour nap. This is cut back dramatically from the 2-3 naps a day he would take.

20. Riley doesn't walk quite yet but he does crawl everywhere and tries to climb most everything. There are some good things about having those short legs.

21. Hurricane Riley leaves a path of destruction behind him where he goes. I can only imagine what a category 4 Hurricane Riley looks like when he starts walking. Good thing he is so stinkin cute. It saves him each and every day.

Riley's list- 31 for 21 Day 21

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Since its the 21st day of the 31 for 21 Challenge it seems like a perfect day for the list of 21 things we love about Riley.  You have find my previous lists here and here.  Once again Rex will be helping me with this list. 

1.  Riley has the most amazing laugh.  His giggle melts my heart daily. 

2.  Riley loves to shoot hoops with his big brother.

3.  Riley loves to eat.  His favorite thing to eat is is cheese. String, cottage, yellow, white he loves them all.

4.  Riley loves to draw...  and not on paper. 

5.  Riley likes to pray with us at dinner time.  He is getting pretty good at the sign of the cross.

6.  Riley loves to wear Rex's Halloween mask...  creepy Lil scary guy running around the house.

7.  Riley is doing great at school.  He loves to ride the bus to school.   Miss Mamy (Amy) Miss Jana, Miss Michelle and Miss Alice are some of his favorite people. 

8.  Riley loves to wrestle with Rex. 

9. Riley has a sense about when people really need a hug or a smile.  He seems drawn to those people who could really use some love.

10.  Riley loves his new babysitter Kristi.  He sings a funny little song about Timmy the Turtle with her that cracks me up.

11.  Riley loves to hide things.  I currently can't find the card reader thingy for the computer that has my memory card for the camera in it.  I know he put it somewhere safe. 

12.  Riley loves to hide himself.  He will crawl in the smallest space available to play and loves to hide under the sofa cushions. 

13.  Riley loves books.  He loves it the most when Rex reads to him. 

14.  Riley loves animals.  He loves the real kind and books with animal pictures.

15.  Riley loves the chickens at Gramma and Grampas house.  He cockadoodle doos at the roster. 

16.  Riley is super curious.  He has an amazing attention span when he is checking  things out.  When he is in a new place he likes to check everything out. 

17.  Riley is a huge Elmo, aka Melmo, fan.  He will sing a long and enjoys his friend big bird too!

18.  Riley can tell you the letters in his name.  Although he prefers if he doesn't think you can hear him.

19.  Riley can spot the gold arches a mile away.  Those darn french fries...

20.  Riley loves to sleep in Rex's bed.  Some days he wants to take his nap there too.

21.  Riley amazes us daily with how smart he is.  I wish he didn't always have to test us and his boundaries to demonstrate his skills. 

21 Things About Riley

Each year during the 31 for 21 Challenge I have put together a list of 21 Things about Riley.  Here is the Link to 2008  2009 2010  and 2011.  I enjoyed going back through them and remembering what Riley was up to each Fall.  He has changed and grown so much each year.  I hope you enjoy this years list.  Add your own Riley fact in the comments. 

1.  Riley's favorite person in the world is still his big brother Rex.  They are great friends and Rex will forever be his greatest teacher.

2.  Riley loves to jump on the trampoline.  Everyday when he comes home from school he asks Rex to take him out to bounce. 

3.   Riley loves to eat.  He loves loves loves cottage cheese, chicken, string cheese and has a new love of broccoli.

4.  Riley loves kindergarten.  He is learning so much each day.  It has been a transition but he is settling in to a nice routine.

5.  Riley had his tonsils out in April and I'm hoping it means many less trips to see our pediatrician this winter.

6.  Riley knows the names of almost every student in his school in all grades.  The 4th Graders are his favorites.  Rex is a 4th grader and so those kids have known Riley for a long time.  It is his own personal fan club. 

7.  Riley has weird thing with names.  He asks everyone "What your name" and he does want to know everyone's names.  Those that he already knows he turns this into a game.  "What your name" and then when you answer he says "no you Bob" or "No you Boo Boo"   The list of made up names go on and on. 

8.  It is not uncommon for him to say "Good Night Sweetie Bob" or "Peace Out Sucker" when he tells me goodnight.

9.  Riley smiles with his whole body.  He can make anyone smile!

10.  Riley loves the Lion King and can sing pretty much all the songs. 

11.  Riley has never met someone that isn't his friend.  He seems to seek out those that need a hug. 

12.  Riley still loves Elmo and his friend Big Bird. 

13.  Riley loves routines.  He is a great helper when you teach him a simple routine like where to put his coat and shoes. 

14.  Riley loves his teacher Mrs Theilman.  He gives her a run for her money everyday but I think he has won her heart. 

15.  Riley has a huge group of girls he loves to play with.  Rex's friends all seem to have little sisters and they are so good to Riley. 

16.  Playing with all of these Princesses may be why he decided to dress up like a Prince for Halloween.

17.   Riley loves books.  He is learning sight words and starting to read.  So exciting!

18.  Riley loves to play soccer.  Each Spring he plays Top Soccer and loves his buddy Kasey.

18.  Riley has killer dance moves.  He loves to dance to most anything. 

19.  Riley has a hard time writing but he can write his own name...  maybe sometime soon he will do it consistently for his teacher. 

20.  Riley talks constantly about going to see the Buffalo at Yellowstone.  It isn't uncommon for him to pack his backpack and head out.  We have to be careful to shut the extra tall latch on the door so he doesn't head out on his own adventure. 

21.  Riley is a funny funny boy.  We wasted a ton of stress worrying about him having Down syndrome.  He perfectly completed our little family  

Happy 31 for 21.  Hope you have enjoyed reading along. 

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21 Lessons Learned

I wanted to post something in honor of Down syndrome awareness month that was meaningful. This is my attempt to share my thoughts on what it is to have a child with Down syndrome. A couple weeks back I posted a list of 21 things about Riley. Well this list is 21 things that I have learned from having a child with Down syndrome.

1. Find a Dr. you can trust and stick with them. I feel a bit like our pediatricians are a part of the family. I see them on a very regular basis especially now that cold season has started with Asthma boy and his side kick wheezy.

2. Cliches not to use in a time of stress. My friend Amy and I think that we will make millions when we publish the book that started with just a list of things not to say to Mary. (cause wow was I pregnant and moody when I discovered Riley would have Down syndrome) Since Amy and run neck and neck for the coveted Drama Queen title we have a list for most crisis situations.

3. Who my friends are. I have some really amazing friends.

4. How much my mom means to me. Growing up I don't ever remember not liking my parents like most teenagers do but we have certainly grown much closer in the last several years. I don't know how I would have managed to get Riley to therapy twice a week for the last year with out my mom's help.

5. OT, PT, Cognitive therapy - and a zillion other ways to "play" with Riley to help his development. I think we should rename it all and call it Play therapy. Maybe it would seem so over whelming if I was just headed to play date a couple times a week.

6. How to fight with my insurance company and occasionally win. So I can't believe I'm actually typing this and please don't be too offended by it. Riley started weekly PT and Speech therapy on Valentines Day, he was 10 weeks old. In approximately May all of his speech therapy was denied and I mean all of it. I guess it took 3 months to figure out a reason not to pay for it. They had no issue paying for the PT but wouldn't pay for the speech because it wasn't "corrective" in nature. So I had fought with several people and this poor fool that answered the phone at Cigna this particular day got an earful. He was going on and on about how if Riley had been speaking before and then lost his speech they would be more then happy to pay for his therapy. It was when he asked me how much Riley was talking that I lost it totally. After I asked the agent if he new many 4 month old children that could talk I possibly added something like so.......you'll teach to retarded children to walk but not to talk. I was so angry all I could think of was that Riley could get all the help he needed to learn the physical side of things but we wouldn't want him to get to advanced and speak clearly. OK like I said not one of my better moments but still I did eventually get the therapy paid for.

7. Children with Down syndrome tend to have the cutest hands and feet ever. How can you not fall in love with the short chubby little things.

8. It isn't a good think to growl at everyone who tells you that those kids are so loving. This is one of the items that belong on the list that Amy and I have made. This is just one of those statements that drive me insane. I would like to think that my children would and are both loving and happy because they live in a loving home. We might be crazy but we are loving :-)

9. Don't take things for granted.


10. Notice the little accomplishments in life. When Rex was tiny we just took it for granted that we would moved from milestone to milestone. I wish I would have paid more attention to the details.

11. Small inside jokes can take on a life of there own. I was so tired of people talking about Riley as "one of those" or "they" that I may have freaked out one evening over dinner when Justin and I had escaped on a date night and were out to dinner with Jeremy and Angie. Well, in a totally off color and yet hysterically funny way Jeremy points out to me that a family we happened passed had a child with Down syndrome, but it went more like "Hey Mary! they got one of them kids too!!!" and with that it started. We often joke with our other friends that have "one of them". I think I have everyone around me paranoid about making generalizations about Riley.


12. The bond between brothers is immediate and very strong. I have been amazed by Rex and the instant total and complete love he has for Riley. I have no doubt that he will always be his protector. I have been worried about how having a brother with Down syndrome will affect Rex... so far I don't think he realizes that all babies aren't just like Riley. If he does he certainly doesn't let on. Rex gets so excited when Riley learns something new, he has a huge sense of pride in teaching Riley. Since I was pregnant with Riley, Rex has had a list of items he will teach Riley. He is currently about to check off "teach Riley to walk" and then I think he is moving on to riding a bike. Both of these activities are entirely more exciting than teach him to sit on the sofa which was his first item on the list after I explained that Riley wouldn't be able to walk and ride his bike for quite a while after he came home from the hospital.

13. I used to think that I was pro choice and proud of it. I have always thought I though I could personally not terminate a pregnancy it was not my place to decide what other women did. Not too terribly long ago I had a couple of encounters with people that were facing a prenatal Down syndrome diagnosis and were leaning to termination. I now know that I am not pro choice. How could you possibly terminate Riley. It is personally offensive to think about.

14. I could adopt. One of my worst fears before I had children was that I wouldn't be able to conceive my own child and I would have to decide if I was able to adopt a child. I have two adopted sisters and it has not always been a bed of roses. When I hear the statistic that 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated I am sick. I know that I could take any one of those children and raise them as my own.

15. Sign language- I love the signing times videos and so do both my boys. Rex has picked up a ton of signs very quickly. He is much better at it than I am. I think it is so cool though that my family and friends are trying to learn Riley's signs too.

16. 80% of children with Down syndrome are born to women under the age of 35 Not could could it happen to me at 30 but it did and I'm by far not the youngest of my friends to have a child with Down syndrome. We have so much education to do still.

17. My house will never be clean. EVER I'm not known for my housekeeping skills but I attempt once in while but seriously they should make a carpet that goldfish crackers and cheerios blend in with better.

18. My fear was a waste of energy. I was so afraid of having a child with Down syndrome. If only I new then what I know now. I wasted a lot of time crying and afraid of what our life would be life and what Riley's life would be. If only I new how wonderfully normal and crazy it would be all at the same time. I wish everyone that knew they were having a child with Down syndrome could meet a child like Riley. Then they would understand.

19. Journaling is a stress reliever for me. While I love Riley to pieces he has also brought some added stress to my life. It is a challenge to keep up with his therapy schedule and Rex's soccer schedule plus any other activities going on and not feel a bit like I'm running in circles. I'm so glad I have found something to help me process it all.

20. I'm a sap. Who knew I could be that excited to see a new born baby latch on to a pacifier. Woo hoo he could suck and that means he'll be able to eat. Or be moved to tears watching a child roll over for the first time. Not only have I been so excited for every new milestone but I see and appreciate them so much more when I see other children do them.

21. I would not trade my crazy life for anything! We have our moments but I wouldn't trade my three boys for anything. I have a wonderful husband that I love dearly, and two hysterically funny boys.

Lesson Learned

Tonight I was taking a stroll down memory lane and reading some of my very first blog posts.  To be completely honest I was hoping for some inspiration for tonight's post and I found it.  I found a list of 21 things that I have learned from having a son with Down syndrome.  I started to rewrite the list but seriously this list is as true today as it was 4 years ago. OK I'll admit I fixed a couple of typos and tweaked a few thoughts but the overall list is the same.  

Riley has taught me some big lessons.  I bet you have learned a think or two from him as well.  Just for fun leave me a comment and share a lesson or two that you have learned from Riley.  Ah come on you can do it.  Whether you know him in real life or just through this blog you know something just popped into your head.  Write it down! 

1. Find a Dr. you can trust and stick with them. I feel a bit like our pediatricians are a part of the family. I see them on a very regular basis especially now that cold season has started with Asthma boy and his side kick wheezy.


2. Cliches should not be used in a time of stress.  My friend Amy and I think that we will make millions when we publish the book that started with just a list of things not to say to Mary. (cause wow was I pregnant and moody when I discovered Riley would have Down syndrome) Since Amy and I run neck and neck for the coveted Drama Queen title we have a list for most crisis situations.


3. Who my friends are. I have some really amazing friends.

4. How much my mom means to me. Growing up I don't ever remember not liking my parents like most teenagers do but we have certainly grown much closer in the last several years. I don't know how I would have managed to get Riley to therapy twice a week for the last year with out my mom's help.

5. OT, PT, Cognitive therapy - and a zillion other ways to "play" with Riley to help his development. I think we should rename it all and call it Play therapy. Maybe it would seem so over whelming if I was just headed to play date a couple times a week.  Update Fall 2011:  I've also learned about Handwriting with out tears, hearing aids, FM systems, and IEPs. 

6. How to fight with my insurance company and occasionally win. Persistence is the key to success.
7. Children with Down syndrome tend to have the cutest hands and feet ever. How can you not fall in love with the short chubby little things
8. It isn't a good think to growl at everyone who tells you that those kids are so loving. This is one of the items that belongs on the list that Amy and I have made. This is just one of those statements that drives me insane. I would like to think that my children would and are both loving and happy because they live in a loving home. We might be crazy but we are loving :-)

9. Don't take things for granted.

10. Notice the little accomplishments in life. When Rex was tiny we just took it for granted that we would moved from milestone to milestone. I wish I would have paid more attention to the details.

11. Small inside jokes can take on a life of there own. I was so tired of people talking about Riley as "one of those" or "they" that I may have freaked out one evening over dinner when Justin and I had escaped on a date night and were out to dinner with Jeremy and Angie. Well, in a totally off color and yet hysterically funny way Jeremy points out to me that a family we happened passed had a child with Down syndrome, but it went more like "Hey Mary! they got one of them kids too!!!" and with that it started. We often joke with our other friends that have "one of them". I think I have everyone around me paranoid about making generalizations about Riley.

12. The bond between brothers is immediate and very strong. I have been amazed by Rex and the instant total and complete love he has for Riley. I have no doubt that he will always be his protector. I have been worried about how having a brother with Down syndrome will affect Rex... so far I don't think he realizes that all babies aren't just like Riley. If he does he certainly doesn't let on. Rex gets so excited when Riley learns something new, he has a huge sense of pride in teaching Riley. Since I was pregnant with Riley, Rex has had a list of items he will teach Riley. He is currently about to check off "teach Riley to walk" and then I think he is moving on to riding a bike. Both of these activities are entirely more exciting than teach him to sit on the sofa which was his first item on the list after I explained that Riley wouldn't be able to walk and ride his bike for quite a while after he came home from the hospital.  Update Fall 2011:  Rex is still his teach in all things.  He is also a great speech therapist.  Rex often makes Riley repeat things and really use his words to earn what ever he is after. 
13. I used to think that I was pro choice and proud of it. I have always thought I though I could personally not terminate a pregnancy it was not my place to decide what other women did. Not too terribly long ago I had a couple of encounters with people that were facing a prenatal Down syndrome diagnosis and were leaning to termination. I now know that I am not pro choice. How could you possibly terminate Riley. It is personally offensive to think about.
14. I could adopt. One of my worst fears before I had children was that I wouldn't be able to conceive my own child and I would have to decide if I was able to adopt a child. I have two adopted sisters and it has not always been a bed of roses. When I hear the statistic that 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated I am sick. I know that I could take any one of those children and raise them as my own.

15. Sign language- I love the signing times videos and so do both my boys. Rex has picked up a ton of signs very quickly. He is much better at it than I am. I think it is so cool though that my family and friends are trying to learn Riley's signs too.   Update Fall 2011:  Riley has stopped signing for the most part and replaced it all with words.  We occasionally get signs for more if he really wants to stress that he wants more food. 

16. 80% of children with Down syndrome are born to women under the age of 35 Not could could it happen to me at 30 but it did and I'm by far not the youngest of my friends to have a child with Down syndrome. We have so much education to do still.

17. My house will never be clean. EVER I'm not known for my housekeeping skills but I attempt once in while but seriously they should make a carpet that goldfish crackers and cheerios blend in with better. Update Fall 2011:  Yep its still not clean.  Not so many goldfish these days.  Riley has moved on to Gogurt and string cheese.  We find string cheese butts everywhere. 

18. My fear was a waste of energy. I was so afraid of having a child with Down syndrome. If only I new then what I know now. I wasted a lot of time crying and afraid of what our life would be like and what Riley's life would be. If only I new how wonderfully normal and crazy it would be all at the same time. I wish everyone that knew they were having a child with Down syndrome could meet a child like Riley. Then they would understand.

19. Journaling is a stress reliever for me. While I love Riley to pieces he has also brought some added stress to my life. It is a challenge to keep up with his therapy schedule and Rex's soccer schedule plus any other activities going on and not feel a bit like I'm running in circles. I'm so glad I have found something to help me process it all.

20. I'm a sap. Who knew I could be that excited to see a new born baby latch on to a pacifier. Woo hoo he could suck and that means he'll be able to eat. Or be moved to tears watching a child roll over for the first time. Not only have I been so excited for every new milestone but I see and appreciate them so much more when I see other children do them.

21. I would not trade my crazy life for anything! We have our moments but I wouldn't trade my three boys for anything. I have a wonderful husband that I love dearly, and two hysterically funny boys.

OK Now its your turn.  Leave a comment.  You know you want to. 

Big Brother Rex 31 for 21 Day 23

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While this 31 for 21 challenge is in honor of Down syndrome awareness and often this blog focuses on Riley today we are going to change things up a bit.  Today we are going to focus on the Big Brother Rex part of the family.  In honor of Rex being an amazing big brother to a boy with an extra 21st chromosome.  I've never done a list of 21 things that Rex loves before.  Hope you enjoy!

 

1.   Rex is my first born and made his entrance into the world two weeks early.  I had been having bad back pain all evening and had no clue that I was in labor until I had the big splash as I headed into a store. 
2. Rex has always been super shy.  I can't even count how many play dates and birthday parties he sat with me and the grown ups because he was too nervous to go play. 
3. Rex is really getting braver as he grows.  It is fun to watch him gain confidence in everything he does.
4. Rex has been struggling with his asthma again.  I thought he was on the road to outgrowing it but the last 6 months has show me that it actually becoming more and more of an issue especially during sports. 
5. Rex has a great sense of humour.  Too often its potty humor but still he is typically good for a laugh.
6. Rex is loving the second grade and is doing really well.  He is coming into his own with his reading and really loves math.
7. Rex would rather be kicking, throwing or catching any type of a ball than doing school stuff. 
8. Rex is super coordinated when it comes to sports and is really fun to watch him put all the pieces of a game together.  He is getting to be a good little soccer play. 
9. Rex loves to play goalie in soccer and catcher in baseball.  I wonder if he'll like linebacker when he tries football?
10. Rex is a sensitive little man.  Last year we saw just how sensitive he is when he thought a friend didn't like the birthday gift he picked out for him and we had full blown tears.
11. Rex is the greatest big brother to Riley.  He is very patient with him and lets Riley join in on most any game or activity. 
12. Rex loves to ride his bike.  He learned to ride with out training wheels after a lot of hesitation and instantly started trying to pop wheelies.
13. Our extended family has had a lot of loss in the last few months.  At one point when we were discussing my cousin going to live with Jesus Rex pumped his fist in the air like he had hit a home run and says how lucky Doug is that he gets to go live with Jesus. 
14.  Rex loves music.  He and Justin play name that tune a lot.  Rex loves to try to play with me because he thinks its hysterical that I never know the name of a song or who sings it. 
15. Rex thinks its wonderful that he is one of the bigger kids in his group.  He is weighing in just over 80 pounds and is 4'2.
16. Rex loves to go to the shoe store.  He is loves to see how much his feet have grown.  I wish he wasn't in such a  hurry to be big. 
17. Rex has always been a story teller.  An all time favorite is one where he told us that there were itty bitty monsters pulling at his hair while he slept. 
18. Rex loves pizza.  His favorite is peperoni with black olives. 
19. Rex is a daddy's boy.  He adores Justin and will do almost anything if Justin likes it.
20. Rex is in his 2nd year of Cub scouts and is in the Wolf den.  He loves the time he gets to spend with Justin working on his scout projects.
21. Rex is an amazing little man and it is fun to watch him grow.  He amazes me daily with ability to love and accept everyone around him. 

Lessons Learned 31 for 21 Day 24

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 I wanted to post something in honor of Down syndrome awareness month that was meaningful. This is my attempt to share my thoughts on what it is to have a child with Down syndrome. Well this list is 21 things that I have learned from having a child with Down syndrome.   I posted this list two years ago during my first 31 for 21 challenge.  I thought I would link to this and created an updated list from 2010.  As I read through this list I really feel like it is as accurate and meaningful as it was 2 years ago. 

1. Find a Dr. you can trust and stick with them. I feel a bit like our pediatricians are a part of the family. I see them on a very regular basis especially now that cold season has started with Asthma boy and his side kick wheezy.

2. Cliches not to use in a time of stress. My friend Amy and I think that we will make millions when we publish the book that started with just a list of things not to say to Mary. (cause wow was I pregnant and moody when I discovered Riley would have Down syndrome) Since Amy and run neck and neck for the coveted Drama Queen title we have a list for most crisis situations.

3. Who my friends are. I have some really amazing friends.

4. How much my mom means to me. Growing up I don't ever remember not liking my parents like most teenagers do but we have certainly grown much closer in the last several years. I don't know how I would have managed to get Riley to therapy twice a week for the last year with out my mom's help.

5. OT, PT, Cognitive therapy - and a zillion other ways to "play" with Riley to help his development. I think we should rename it all and call it Play therapy. Maybe it wouldn't seem so over whelming if I was just headed to play date a couple times a week.

6. How to fight with my insurance company and occasionally win. 

7. Children with Down syndrome tend to have the cutest hands and feet ever. How can you not fall in love with the short chubby little fingers and toes.

8. It isn't a good thing to growl at everyone who tells you that those kids are so loving. This is one of the items that belong on the list that Amy and I have made. This is just one of those statements that drive me insane. I would like to think that my children would and are both loving and happy because they live in a loving home. We might be crazy but we are loving :-)

9. Don't take things for granted.

10. Notice the little accomplishments in life. When Rex was tiny we just took it for granted that we would move from milestone to milestone. I wish I would have paid more attention to the details.

11. Small inside jokes can take on a life of there own. I was so tired of people talking about Riley as "one of those" or "they" that I may have freaked out one evening over dinner when Justin and I had escaped on a date night and were out to dinner with Jeremy and Angie. Well, in a totally off color and yet hysterically funny way Jeremy points out to me that a family we happened passed had a child with Down syndrome, but it went more like "Hey Mary! they got one of them kids too!!!" and with that it started. We often joke with our other friends that have "one of them". I think I have everyone around me paranoid about making generalizations about Riley.

12. The bond between brothers is immediate and very strong. I have been amazed by Rex and the instant total and complete love he has for Riley. I have no doubt that he will always be his protector. I have been worried about how having a brother with Down syndrome will affect Rex... so far I don't think he realizes that all babies aren't just like Riley. If he does he certainly doesn't let on. Rex gets so excited when Riley learns something new, he has a huge sense of pride in teaching Riley. Since I was pregnant with Riley, Rex has had a list of items he will teach Riley. He is currently about to check off "teach Riley to walk" and then I think he is moving on to riding a bike. Both of these activities are entirely more exciting than teach him to sit on the sofa which was his first item on the list after I explained that Riley wouldn't be able to walk and ride his bike for quite a while after he came home from the hospital.

13. I used to think that I was pro choice and proud of it. I have always thought I though I could personally not terminate a pregnancy it was not my place to decide what other women did. Not too terribly long ago I had a couple of encounters with people that were facing a prenatal Down syndrome diagnosis and were leaning to termination. I now know that I am not pro choice. How could you possibly terminate Riley. It is personally offensive to think about.

14. I could adopt. One of my worst fears before I had children was that I wouldn't be able to conceive my own child and I would have to decide if I was able to adopt a child. I have two adopted sisters and it has not always been a bed of roses. When I hear the statistic that 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated I am sick. I know that I could take any one of those children and raise them as my own.

15. Sign language- I love the signing times videos and so do both my boys. Rex has picked up a ton of signs very quickly. He is much better at it than I am. I think it is so cool though that my family and friends are trying to learn Riley's signs too.

16. 80% of children with Down syndrome are born to women under the age of 35. Not only could it happen to me at 30 but it did and I'm by far not the youngest of my friends to have a child with Down syndrome. We have so much education to do still.

17. My house will never be clean. EVER I'm not known for my housekeeping skills but I attempt once in while but seriously they should make a carpet that goldfish crackers and cheerios blend in with better.

18. My fear was a waste of energy. I was so afraid of having a child with Down syndrome. If only I new then what I know now. I wasted a lot of time crying and afraid of what our life would be life and what Riley's life would be. If only I new how wonderfully normal and crazy it would be all at the same time. I wish everyone that knew they were having a child with Down syndrome could meet a child like Riley. Then they would understand.

19. Journaling is a stress reliever for me. While I love Riley to pieces he has also brought some added stress to my life. It is a challenge to keep up with his therapy schedule and Rex's soccer schedule plus any other activities going on and not feel a bit like I'm running in circles. I'm so glad I have found something to help me process it all.

20. I'm a sap. Who knew I could be that excited to see a new born baby latch on to a pacifier. Woo hoo he could suck and that means he'll be able to eat. Or be moved to tears watching a child roll over for the first time. Not only have I been so excited for every new milestone but I see and appreciate them so much more when I see other children do them.

21. I would not trade my crazy life for anything! We have our moments but I wouldn't trade my three boys for anything. I have a wonderful husband that I love dearly, and two hysterically funny boys.

A friendship that shares everything - Christine's story - 31 for 21 day 22

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As Mary was starting this year’s 31 for 21 challenge we had joked about me doing a “guest blog” spot at some point during the month. Then she did the post that took us back to two of her favorite posts from when she started this blog. One of those posts was from her first (and to this point) only Friendship Friday edition. The friend she talked about in that post is my sister, Christine. We thought it would be interesting to do the guest blog spot, but have me interview Christine to get her point of view on their friendship and that period when Mary and Justin learned of Riley’s diagnosis.

A friendship that shares everything...

Christine and Mary met at Rocky Mountain College, as Mary noted in the Friendship Friday edition. Christine recalls how crazy it was how instantaneously they hit it off and how thrilled she was to later find Mary in the same dorm. Looking back, for the short period of time they really had together – in the grand scheme of things – before Mary and Justin moved to Spokane, it really is spectacular, the bond that was forged in that time.

Christine remembers participating in a walk at Rocky and she and Mary came in “dead last” simply because while they were walking, they were doing a great deal of talking. Their friendship became one where they told each other everything – and that’s just not something that happens everyday.

The Call

It had been quite some time since Christine had talked to Mary and she happened to call her the day Mary and Justin were going to the genetic counselor (following the confirmation the day before). Christine says she knew instantly that something was wrong, “I immediately thought they had lost the baby.” Because that’s where her thoughts went to right away, she remembers feeling relieved that it was Down syndrome – though she was scared for them. Mary remembers the support Christine provided in that conversation, while Christine simply says, “She talked…And I just listened.”

During that phone call, Mary told Christine of the book their doctor had given them, which she went out and bought so she could begin learning more as well. However…“The book was scary!” Eventually she had to stop reading “the scary parts,” because she couldn’t see worrying over things that might never be a part of Riley’s reality. Prayer was a constant factor throughout the remainder of this pregnancy – though prayer is a big part of Christine’s life in general.

Being Apart

Christine remembers how much she did not want Mary and Justin to go when they moved to Spokane, but believes their location is a great blessing. To her, their being in Spokane with the Guilds’ School and the other resources is a great gift, not to mention the familial support they have there. She also loves hearing about the friends Mary and Justin have made through Riley. It’s wonderful to Christine that Mary has people in her life who can genuinely relate to her family’s experiences. That's not to say it isn't frustrating when things like the Buddy Walk come up and it's impossible to be there. 

When asked about her ability to not say the wrong thing, so to speak, she shares that it’s important to her that she does more listening than talking, as people so often speak before they think.

All These Kids

We talked a little bit about “the guilt factor,” and Christine had this to say about it: “Yeah, you know, of course I’ve thought about it…I mean four kids, all healthy…What are the odds of these things? How does this happen?”

Although, you have to look to the positive, once Riley was born there was so much to be thankful for. With all the horror stories and possibilities the book had filled their minds with, to have this boy, this beautiful boy who did not have a slew of health issues…It’s a blessing. To have Mary and Justin do the amniocentesis when even in their minds they thought it was pointless…It’s a blessing. To have a brother who was so clearly meant to be Riley’s big brother extraordinaire…It’s a blessing. To move to Spokane with a school built entirely around the concept of helping children with developmental disabilities…It’s a blessing. To have familial support that is so unshakeable…It’s a blessing. There are so many things to be thankful for.  

When asked if she has ever specifically addressed Riley’s disability with her children, Christine notes she didn’t make a big deal out of it mostly because she didn’t think it was something her kids would really notice and she was following Mary and Justin’s lead with Rex. They were aware that there had been concerns for Riley’s health through their prayers for him, but outside of that, Christine has always said to them, “It might take him longer to get there, but he will be able to do everything you can.” She loves the Down syndrome Creed.

What does this friendship mean to you?

After a brief pause to formulate her words, this is what Christine has to say that sums up her friendship with Mary beautifully.

By being friends with Mary; she helped make me the person I am today. She brought me out of my shell...I might not still be the most outgoing person, but she brought backbone into my life. Looking at me, she went on to say, you might not see the difference, but part of who I am today, belongs to her.

For me, there was something about Mary and Justin that, I think, for all of us it was as if they had always been in our lives. Perhaps it was the confidence my sister developed in herself through this friendship that made us love them or maybe it was just whatever “it” was that first time they met somehow filtered out to the rest of us. Whatever “it” is, we’re glad to have you in the family Kibbes.

--Becca

Christine with her family

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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.  

Some Call it Desperation

As we have moved through the month of October and the 31 for 21 Challenge I have tried to share an honest picture of our world.  We aren't wallowing in Down syndrome most of the time.  I think like all families we are trying to cope with day to day life and making sure our kids have the most opportunities to be healthy and successful.   Honestly the truth be told I my goal and motivation behind most things is how to make life easier.  

Riley isn't sleeping well -  then how are we going to get him to sleep better.  Rex is coughing up a storm -  how are we going to get his asthma under control.  The list goes on and on.  

 Both of my boys have health issues.  Rex seems to outgrown the worst of  his asthma but he kept us on our toes for along time.  Thankfully the days of driving to daycare with the portable nebulizer going in the back of the van are behind us.  Riley has been so lucky not have to deal with the really big health issues that so many children with Down syndrome have.  We don't have life or death issues going on so we get to work on fine tuning things for him.  Down syndrome presents a unique issue in the fact that Riley's parts are small. The facial anatomy of Down syndrome predisposes him to ear infections.  The middle ear is aerated by the eustachian tube, a small tube that goes from the middle ear space to the area behind the nose in the nasopharnex.  Upper airway infections and allergies can cause the eustachian tube to become swollen, trapping battery and causing ear infections.  Low muscle tone affects the opening and closing of the eustachian tube as well,  which can cause negative pressure to build up in thimble ear space, leading to fluid retention and infections.   He has tiny ears on the inside and the out.  The short version is his snot just doesn't drain very well.  A typical cold for him will usually end up with an ear and or sinus infection that requires a trip to the Dr and an antibiotic.  He has had tubes in his ears since he was about 9 months old and thankfully we are still on that original pair.  

I'm a big believer is modern medicine.  I'm all for a well used antibiotic but I also am all for trying things to prevent things naturally.  I decided to explore the world of Essential Oils this summer.   I have a few friends that have gotten into them and had success helping their family deal with a  variety of issues.  I decided to go with a company called  Young Living.  This is just one of many companies that are available that has high quality essential oils.  I don't want to debate the qualities of one company over others.  Young Living works for me and I have found oils that work for my family.     Young Livings website gives this short description:  

The next time you drive by a field of fresh peppermint or hike through a pine forest, breathe deeply—you’re experiencing the soul-soothing power of essential oils. But essential oils are more than nice scents; these powerful plant extracts are your path to the lifelong wellness we are committed to helping you discover.

At the intersection of cutting-edge research and traditional wisdom, Young Living formulates targeted, essential oil-based wellness solutions that empower you to dodge harmful chemicals, energize your life, ditch stress and negativity, and reclaim your natural radiance. 

My original focus was to help Riley in a few key areas  including trying to boost his immune system,  help him focus and also to help his sleep.    Riley seems to really like them.  He asks for his smoke every night.  I diffuse a variety of oils directed at helping him relax and promoting sleep.  Lavender is a common oil we use.  When he had a cold we added immune boosting and purification oils.  Most of the oils we choose to use with Riley can be added to coconut or other house hold oils and massaged into the bottom of his feet or on the back of his neck.  This has become a nice few minutes that we spend most nights calming before bed.  I figure even if the oil does nothing more than encourage a few quiet moments before bed it can be bad.  We have started adding oils to his bath as well.  I use epson salt as a quick and easy bath salt to add the oils too and now Riley asks for his sugar in his bath.  

I've started getting braver in how I use them.  Rex is a bruised mess after football.  I've been using a few on him to help promote the healing and relaxation of bruised muscles.  Basically a natural icey hot type product.  Justin has been the biggest skeptic in the house.  He makes fun of me and was pretty sure I was wasting money.  He is becoming a big fan of an oil blend called Peace and Calming.  He can actually feel a relaxing calming feeling when its applied to the back of his neck.  I'm not the biggest fan of that one because I don't like the smell of patchouli oil but if it helps promote calmness around this house I'll take it.  I used a lot of peppermint with a sinus thing I had to help me feel like I could breath and to ease headaches.  There are so many simple things we have done to help make life just a little calmer and easier.  

My mom may have accused me of being a desperate women when I started.  I'm the first to admit that  is a true story.  You live with a tired Riley for a few days and then we'll talk.  Riley's behavior is often our first indicator that he is getting sick.  It is amazing how much more sassy and stubborn he gets when he is focusing all of his energy on fighting off a cold.  There is a certain amount of sassy Riley that we expect on a day to day basis.  It is a part of what makes him who he is but man there is a line he crosses that is simply exhausting to parent.  So yes I'm a desperate mom trying most anything to keep my nice boy around and not his evil twin.  

Day 13 31 for 21 2013

Ok I'll admit I'm cheating a bit for my post tonight. I went back through past 31 for 21 challenges and this was my post from 10/13/2010.   It is all still true. Riley adores his big brother and Rex is still amazing with him.   Love these boys!!!

                                                  

 

The story is always better with Rex reads it to me!

 

Rex has super powers and when he uses them  he can get his little brother to do pretty much anything.  I think Rex has recently begun to appreciate and understand just how much Riley looks up to him.  From the day Riley was born he and Rex have always had a special bond.  It is truly amazing to me to watch them together.   Rex was the first to get Riley to smile and for a long time was the only person Riley would smile for.  Riley wants so badly to be big and to be able to do everything that Rex does.  It is such an amazing motivator for Riley and I think a large part of why he is doing so well with his physical development. Rex is truly an amazing big brother.  He is patient and kind but also doesn't baby Riley or let him get away with things.  He handles the hero worship well and truly loves every second with his little brother! 

We have recently discovered that Rex is quite excited to read to his brother.  When I told him it was time to read after dinner he hurried to get a book to read to that Riley would like.  I love that Rex is super excited to do things like this, that he is so proud of himself that he can teach Riley.  They have a beautiful relationship!

A while back a friend of mine did an series of articles on our family.  Here is a link to the part about Hurricane Riley's Big Brother Rex  Becca does a great job of summing up their relationship. 

Day 12 31 for 21 2013

This time seven years ago our family was anxiously awaiting Riley’s arrival. We had already had the amniocentesis and knew Riley would have Down syndrome we just didn’t really understand what that would mean. To say I was freaked out would be a major understatement. 

I don’t truly think I knew a single person with Down syndrome outside of our neighbor’s adult son. I had a few months left of the pregnancy to stew about what might be and to read that horrid book we were given from the hospital. That book did an excellent job of making me a neurotic mess. It outlined all of the health issues that kids with Ds face -everything from massive heart defects and increased risks of childhood leukemia to hearing and vision issues.

 I could barely picture what Riley would be like as a baby much think ahead to his school years. Once Riley arrived on scene things became a little easier but even then I had a difficult time looking too far into the future. I couldn’t picture Riley heading to school or birthday parties with his friends. I certainly never pictured the sassy, bossy little man with the quick sense of humor that he has become. His imagination and sense of humor keep life exciting to say the least.

 So today for your 31 for 21 reading pleasure I have a few small random snippets of life and conversations with Riley.

 Yesterday Riley and I went to the grocery store and I allowed Ri to bring his small bear into the store with us. We were trucking around picking out what we needed and I realize that Riley is making grunting noises. I look down at him in the cart and he is moving his bear out of the little cup holder in the kart and proceeds to tell me that his bear just went poop. I doubt the store had any idea how multifunctional that cup holder could be. 

Riley was waiting for Justin yesterday morning as he opened his bedroom door. He walks over to our bedroom door and yells Good Morning Honey! to me. 

This summer he had the lifeguard at the pool convinced that the babysitters name was Mary. Apparently Riley decided my name was equivalent to a swear word so anytime someone told him something he didn’t like he would roll his eyes and say OK MMARRY!!!  Riley didn't like being told not to jump in with out his life jacket so the sitter got the OK MAARY one than once. 

This summer when Justin’s parents visited from Florida he tormented his Grampa Tom by deciding to call him Granny.

 Riley was even able to get his jabs in before he was talking. One afternoon Rex was crying about something and Riley proceeds to make the signs for crying and then baby. Nothing like being mocked by your little brother and in sign language to top it off. 

There are tons of these stories that make me giggle. I’m sure you have one too so you can help with this post. Leave your own funny Riley story in the comments. Thankfully Riley wasn’t limited by my lack of imagination of what his life would be like. I still can’t attempt to imagine the crazy things that he will come up with next. We have learned to sit back and laugh and enjoy the ride though.

What... Don't you do your homework in a super hero mask??

31 for 21 Day 29

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I only have two more days of this 31 for 21 challenge and I'm not feeling inspired.  I have lots of random thoughts but no really complete thoughts running through my mind.  Its been a rough week and its finally Friday.  I am ready to take my glass of wine and veg in front of the TV.    I'm hoping a good night's sleep and waking up knowing I get to spend the entire day with the boys will help shake this funk I'm in. 

I was hoping to share a video of Riley but since it seems that he has hidden my photo card there won't be new pictures until I find the magical place he stashed it.  I've checked the usual spots and not had success. I sure hope he out grows this need to hid things soon.  Tonight when I got home from work he decided it would be fun to hide himself in the fireplace.  In the 6 years we have lived here it has never had a fire in it but apparently we don't dust there either...  YUCK

Becca and Amy since I'm pretty sure you are the only people that read daily and leave comments I'll wish you two good night.  Take care of you and thank you for being dear friends.  The rest of you will get a shout out too...  just as soon as you delurk and leave a comment or two.  Love ya all!


PS...    Plain Gramma will be making a guest appearance before the 31 for 21 Challenge is over

Interview with Rex 31 for 21 Day 14

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Tonight I decided to ask Rex some questions about Riley and what it is like to have a brother with Down syndrome.  I think you'll enjoy reading what he had to say.  Rex has such a sweet soul.  You loose track of it underneath the stinky potty humour and the wrestling.  He would rather have a ball of any sorts to kick or throw but he was super exited to sit down and read Riley a bedtime story tonight.  This boy just makes my heart swell with pride. 


What is Down syndrome?
Down syndrome means to me that they need a little extra time to learn things.  Like talking takes him longer and that's why he watches Singing Times to help him learn to talk and do sign language.


What do you think about having a brother with Down syndrome? 

I have so many ideas I need to pick one.  It makes me happy because I can read him books and help him learn to speak and ride bikes. 


What is the best thing about having Riley for a brother?

We get to wrestle so that I can help make him stronger.  We read books and play games.  I love playing with Riley.  The second best things is shooting hoops with him.  Almost everything is great about having Riley for a brother. 

What is the worst part about having a brother with Down syndrome?

That's a hard one.  He hits and kicks and bites and he tackles me.  There's not that much stuff that is bad about Riley.  Do you think that would be different if with a little brother that didn't have Down syndrome?  Just a tiny bit. 


What would you do if someone made fun of Riley?

I would say that is it is not funny to laugh at some one with Down syndrome.  It just takes a little bit longer for them to learn. 

How would it make you feel?

It would make feel sad.  I would be sad that someone was making fun of someone with Down syndrome. 

What would you tell a friend that was worried about having a brother with Down syndrome?

That its fine.  That he is just a regular person but it just takes a little longer for him to speak and walk and to potty train him.