No Fairy Tales here

Its that time of year again and I'm getting ready for the 31 for 21 challenge.  Starting tomorrow October 1st I'll be posting every day in honor of Down syndrome Awareness month. It is a small thing that I can do in honor of Riley. I hope you enjoy and come to visit often.  I'm sure this month will go by quickly and I'll be very motivated to post every day because of all the great comments you all will be leaving. 

Not every day will be a post about Down syndrome in fact most may not be.   When this blog started it was a way for me to write for myself and journal my journey and an outlet for stress.  I have discovered that writing can be very calming for me.  It seems I am a bit better at organizing my written words than I am my with my outside voice and so I continue to use this journal as a way to sort out my emotions and thoughts. I started this blog in September 2008 just so I could join in on the 31 for 21 challenge.  Back then I had a lot to say about Down syndrome and our crazy life.  I guess I still have lots to say about our crazy life but not so much about Down syndrome.   One thing I continue to do is strive to always be honest.  No matter the issue or thoughts I try to share my journey in a real and honest way.  I find that honesty is what draws me to the blogs I like to read.  I don't need a fairy tale or a pretty picture I much prefer real and honest.  So I hope you come back often to share in this adventure.  I hope you come back to learn more about Down syndrome and share in the hysterically wonderful life that we live with Hurricane Riley and his Big Brother Rex. 

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My List

We are currently in the middle of a week of a week of training at work (American Cancer Society)  and as we have moved through the week we have been given messages of appreciation and also heard several of our coworkers stories. I wanted to share a bit of my story as well but I'm not always so good sharing my story out loud,  but here on my blog in my own space and my own time I will share. 

Over the last few years I have shared much about myself and my journey on my blog and you my friends are welcome to get in my brain if you wish and scroll through older posts but for today I will share a  glimpse of what keeps me here with you.

When I started with the American Cancer Society (ACS) over 9 years ago my Regional Vice President and supervisor at the time, John,  told me that this might be the only job I have where my one and only goal is to put my organization out of business.  Wouldn't that be a beautiful thing if none of us had jobs.  Can you imagine a point in our life where we wouldn't have to watch those we love suffer and fight this ugly disease??

I have held many different positions over my years with ACS and like many of you reading this I have worked directly with our volunteers to impact the lives of cancer patients and their families.  Today I don't have the privilege of working directly with our volunteers very often.  Today I work with processes and data and all of things that aren't the FUN part of our work.  OK I'll admit I'm quirky and LOVE this part of my job but I realize it isn't the part that all of you love.  There is a reason that I do it though and this week of learning and sharing has made me think more about why I get up and go to work every day when I'd rather be home playing with this little guy...

 Or helping at this little man's school...

I have a list of reasons that is all to long as I'm sure you do too but since this is my blog you get to read part of my list!

1.  My Grammy June was the first person I knew with breast cancer.  She won that part of her battle but at 91 years young I lost her anyway. 

2.  When I was about 12 a dear friend of our family lost his battle with cancer.  The image of him in the hospital will forever be etched in my mind. 

3.  My Aunt Dotty lost her battle with colon cancer within weeks of the birth of my first son. 

4.  My friend Lora lost her son to a brain tumor and that is just something no mom should have to go through. 

5. My son has Down syndrome and children with Down syndrome are at a much higher risk of being diagnosed with childhood leukemia than the typical population.  YES I panic a bit each and every time he has a low grade fever.

6.  Two weeks ago my Uncle was diagnosed with esophageal cancer that has already moved on to his liver.

7.    7 days ago I attended the funeral of my 54 year old cousin, Doug, who lost his battle with bladder cancer that wasn't satisfied with his bones and so moved into his brain as well.  He lost his battle 9 days before his youngest daughter was married.   (Click here for additional story)

My supervisor, Deb, has told me time and time again to be pleasantly persistent.  Make sure that I am able to share our goals, our strategies and our forms in a way that makes sense to everyone.  Make sure to be patient because not everyone you talk to understands forms, siebel and data like you do Mary.  Thankfully Deb is also patient and pleasantly persistent because to be truthful it is hard to be patient.  By design I'm not a patient person and  some days it begins to be a little overwhelming when not only your family but the family of your friends and coworkers are all being attacked by this horrible disease.  On those days I feel a bit helpless.  On those days I want to make sure that everyone does understand data and all we do to gather it and all it does for us.  On those days I want to make sure that everyone understands that we really will have more access to share our information with patients if we prove with data to the hospitals that we really do serve there patients in meaningful ways.  On those days I want to make sure that everyone understands no funder will give us money if we can't prove we are responsible in how we spend it.  On those days If I am not as patient as I should be I apologize. 

On those days when it seems too much to be surrounded by this ugly disease and I feel so powerless to it all, I think about my list and your list and why we all continue to do our part day after day. 

Cousins!

I have been trying to decide if and how to share this story for a while but I feel like it needs to be shared.   I hope I do it justice. 

My family is well known in the little town where I grew up. Well known for being a huge Catholic farming family.   There are so many members my family, that had its start on this beautiful hill, that it is sometimes joked that everyone around the county is a cousin.  

We gather often to celebrate life and family.  Often great laughter is shared during our gatherings. 

I am the 2nd youngest cousin on the Hein side of our family.  This puts me in the middle of multiple generations.  My 1st cousins are around 20 years older than I am so I end up being closer in age to their children.  When I was younger and first started to babysit I was able to babysit for my cousin's Doug.  He and his wife Kathy have two of the cutest little girls ever.  Tiffany was a great first babysitting job because she never stopped talking.  Never a moment to remember you were pretty much alone in the middle of a field in a big ole farm house.  Tiffany and her little sister Natalie were always special little cousins to me.  Well over the years we all grew up.  Its funny how that happens with out anyone noticing. 

As you can see Doug and Kathy have a beautiful family.  The girls are all grown up and they have two sons to add to the mix.  Well, Natalie's Joe was the second of the boys to be added to family.  Natalie, the daughter of a wheat farmer moved to Iowa to become the Queen of a corn farm, well maybe the princess.

This cute couple was married yesterday. 

Several months ago Natalie had asked if Riley would be the ring bearer at her wedding.  How fun that my son would be the ring bearer.  Tiffany and Natalie lit candles at our wedding.  They were Jr high and High school age so I don't think they would have gone for the throwing of the petals job.    I don't know if Natalie ever thought twice about Riley having Down syndrome but it certainly warmed my heart that she would ask him to be in her wedding.  I've worried and worried about Riley making it down the aisle and wondered if he would smile nicely for the pictures.  It wasn't too many years ago that Rex was supposed to be the ring bearer in Tiffany's wedding and that didn't go as planned so I was determined that we wouldn't have a repeat. 

As the wedding date approached Doug's fight with cancer became more and more difficult until finally his pain was taken away and he went home to be with the Lord.    This past week this beautiful family said good bye to their husband and father.  Again, the cousins gathered around to mourn and to celebrate the life of a good man.  I'm not sure how to explain the feeling when the entire family gathers.  To me it makes things feel  like everything is right in the world. I'm not sure if that makes any sense, especially if you don't have a large family.  Its almost as if the power of numbers plays a part. 

Prayers in huge quantity must be heard louder, right?

As the sun peaked down on this beautiful location you could feel Doug

 looking down on this very special day. 

 As the families gathered together to help Natalie and Joe begin their journey together you could feel the love in the air. A very proud Mama walked Natalie down the aisle.   It was a great celebration!

 

The little flower girl was so cute but a little unsure of the crowd so Riley helped her down the aisle.  Who would have ever dreamed that my little man would be helping this sweet girl down the aisle. Don't ever underestimate the power of M&M's to motivate a three year old boy. 

Success! 

This little man performed!  He had so much fun dancing and of course swinging and sliding all afternoon!

So as the celebration comes to a close and the cousins disperse back to their homes please keep Kathy, the girls, and our entire family in your prayers. 

Two first days of preschool??

The first day of preschool was Tuesday.  Riley has been sadly watching Rex head off to school for an entire week but Tuesday he started not one but two preschools.  I was so excited on Tuesday I could hardly stand it.  In the morning we buzzed around the house making sure we were ready and had our back pack ready and our snack packed.  Riley was headed off to his first day of preschool at All Saints.  This the same school where  big brother goes to the 2nd grade.  Rex is super excited for Riley to be at his school.  He told me the only thing better would be if he was in the same building.  The school is split in two campuses and has children preschool thru 8th grade.  Rex has been telling everyone that his baby brother is going to his school.  Its the cutest thing to listen to how proud he is.  The addition of preschool two days a week at All Saints was a late addition to the school year line up for Riley.  About a week before school started we received a phone call telling us that Riley had been on the wait list but there was a spot for him now.  Typically kids have to be fully potty trained or they can not attend preschool but we were able to make arrangements for our new babysitter Kristi (that's an entirely other post) to be at school with Riley to take care of any diaper/potty needs and she will also be available in the classroom as needed.  On Tuesday I got to hang out with Riley and see how he did his first day.  He fit right in. I new he would but it was still pretty amazing to watch.  I was so proud of him as he sat on the carpet and joined in with the other kids.  He has made so much progress over the summer that he was trying to do the hand gestures and actually doing a little talking to the kids on his own. Typically Riley likes to watch for a bit before joining in but he jumped right in. I know Riley is capable of so much but it still catches me off guard once in a while when I see him being so typical with his friends.  It makes me tear up just thinking about what a big guy he is getting to be.  We are extra excited about Riley's teacher at all Saints.   Miss Amy just so happens to be one of Rex's best buddy's mom.  So not only do we have a great teacher that is familiar with special needs children but she is a friendly face to Riley to make him feel at home. 

 

OK Mom Let's go already!

Proud big brother!

We spent from 9-11:30 at All Saints and then stopped by home to rest and have lunch before heading to his regular preschool from 12:30- 3:00.  Riley is attending the preschool at Sheridan Elem. again this year.  We absolutely loved his teacher Miss Michelle.  She is a great teacher and demands the best from Riley.  As she says he isn't "allowed to operate on cute".  He tries often but she makes him meet high expectations.  In this afternoon preschool he is with 14 other children with different special needs.  He also receives his speech, PT and OT during this time. 

I was feeling some big mommy guilt in the spring when we choose to keep him with his current teacher instead of moving him to a class that had typical role models.  I am so excited that we were able to add All Saints and an entire room of typical kids that will teach Riley tons.  I think he might teach them some things as well.  If this first week is an indicator Riley is up for the challenge.  He was tired but still up and raring to go each morning.  I think this is going to be a great school year!!!