Family Update – September 2012

I’m back! Time to catch up with the Krause house!! We had a very busy summer. Our family vacation plans were thwarted by the second round of a super-rare infection – this time the CDC got involved and we all had to take mega drugs that made all our bodily fluids red for a week. Try not freaking out with that diaper change! Peter and I had a glorious week together …..just the two of us! As soon as John and the kids got home we went into crazy busy mode! The start of sports and school were eclipsed by the blessing of family visits. John’s parents, my parents, and my brother whom I had not seen in almost 8 years. He, his beautiful wife and their two gorgeous children came from Spain. All in all we had 6 weeks of guests and hope they had as much fun as we did!

The Mortimer-Garcia-Krause Family Portrait – 2012

So what did we do?
Finally home improvement! The well loved old green siding (wood from the 70’s) was replaced by and earthy stucco. To mark our territory we put a bear (THE Krause bear) on the side of the house. People literally pulled over to the side of the road and come tell us how much they loved the bear!  In addition our deck that was rapidly pulling away from the side of the house was pulled down. The gap was getting large enough that I thought I might need to train for olympic long jump. The deck was replaced with a patio and almost done fire pit on the back, and an upper deck with almost done outdoor cooking space. My ever-handy parents-in-law painstakingly are placing rock on the cabinetry. Doesn’t it look great! Will post before and after pictures once all the projects are complete – does not look like the same home! John has been working on the front landscaping…..almost there!

The front of the house……getting there! Will be very thankful when all the little remaining project are done.

Our annual pool party! And a big THANK YOU shout out to my mom who collaborated with John to pull off a great event…………I was nose to the grindstone at work until minutes before folks started arriving. The weather was great and much fun was had by all. I would be remiss if I didn’t thank all who made donations to our BW team and the other charities we were raising funds for – THANK YOU!

Pool Party……a paaaar-teeeeey!

CSDSA Buddy Walk 2012 – Team Peter Bear!

While my parents and brother were here we did so much! We celebrated my mother’s half birthday and my father’s 75th birthday. My mom got her much dreamed for Pandora bracelet and my father reclaimed his youth with a full Nascar experience. Yes – a full Nascar experience. Not sure who was more excited – him or the grandkids that watched him whoop the other racers as he almost lapped them at 160mph? He got flagged for going too fast which of course only added to the grandkids excitement!

My parents – aren’t they cute??!!

My dad kicking butt at 160mph!

Racing must run in the genes. We spent endless nights sitting on the patio under the glow of the tiki torches watching the kids race the broken electric car down the hill and through the yard, only to push it back up the hill and do it again, and again, and again! The engineers in the group figured out how to press the pedals to maximize speed and just the right angle to get maximum speed without taking out the neighbors back fence. My niece was hesitant to try it at first. Then gave it a try with a look of fear as she white-knuckled it down the hill. She tried again. Then again. And by the time us nervous parents were done with our umpteenth bottle of wine she might as well have been standing on the car surfing it down the yard at 160mph! Guardian angels were in overdrive!

The grandkids racing through the neighbors yard…..how many kids can you get on a toy car? – TOO MANY!

Night at the Sky Sox was a first for my family from Spain – and who can resist the excitement of a good game! Lights on, cool night, some peanuts and cracker jacks – perfect!

Sky Sox game with the family – first time our Spanish family watched one live.

Site seeing, zoo, shopping, big dinners and just play time made it so much fun!! I love my fairies running through the yards! It was so much fun having the family here and getting to know my niece and nephew……no more 8 years between getting together!!

The boys feeding the giraffes @ Cheyenne Mountain Zoo.

My little fairy princesses

Last but certainly not least to catch everyone up…..Jack and I were gifted with tickets to see our very first Denver Broncos game! You would have thought we won the lotto. Fully day experience – Starbucks for the drive to Denver, new T-shirt of me and jersey for Jack, train ride to the stadium and the the walk in. That first time we walked through the tunnel and saw the full stadium and thousands of people all there to cheer on the Broncos. The excitement! The fans! The music! There was so much to enjoy – including a phenomenal first half followed by a close but tough final loss. Having grown up in Peru, I was never exposed to (American) football. My enjoyment of the sport started in college when I watched the SF 49ers and Joe Montana (yep….. I just dated myself!). So for me it was extra exciting to see the 49ers vs. the Broncos. Jack was excited to share with his fellow players at practice how he got to see Peyton Manning. He started to snooze on the train back to our car from the excited exhaustion. Dinner together and the drive home ended with him tuckered out with a big smile on his face!

Our first Denver Broncos game! Me & Jack – August 2012

We were blessed to have my parents stay for a couple of extra weeks, and our friend John E. treated everyone to an exciting ride out in his 80 year old Ford! So much fun!!

Going back in time!

Busy summer – and extra busy October on the way! Right now surviving the start of school and trying to get back into a routine – not easy! Praying Peter continues to stay healthy as we approach the two year anniversary of his Leukemia diagnosis, and a year from his near fatal infection.
xoxo
catherine
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Peter’s First Month of Kindergarten

Oh goodness – I have been so delinquent in updates! Before I get started I want to give a big THANK YOU shout out to all who supported our Buddy Walk Team in honor of Peter. This year we exceeded our goal as a team, and the Buddy Walk far exceeded fundraising goals! The support in our community was outstanding – awareness of Down syndrome was built with TV and radio personalities staging full week events, many families interviewed on the radio, I was interviewed on local morning TV show (so exciting!) and so much more. There were almost 4,000 walkers the day of the event and the weather was perfect. We were blessed to have my parents join us again this year. It is so inspiring to see so many families come out to support individuals with Down syndrome, to see little ones that remind me how far Peter has come, and older kids that motivate me to encourage Peter to keep learning and developing. He may be a turtle in the pack – but as my pediatrician told me when Peter was tiny “How fast you go does not define how far you go” …..and those words still encourage me 5 years later!

Peter Bear with the glasses…. before he broke this pair and “lost” a lens.

A month ago Peter started Kindergarten!
For those who have been following Peter’s journey for the last several years, you’ll remember we were less than thrilled with our experience at his school. Last year for pre-school we had him moved to the district main office. During the transition meeting we asked that both his “assigned” school and our neighborhood school attend as we wanted to determine the best option for Peter. With some reluctance we agreed to enroll Peter at the “assigned” school. The staff at the transition meeting described the changes made to improve their program and impressed me. I was cautiously optimistic.
On orientation day I arrived to find we had a new kindergarten teacher overwhelmed at the idea of Peter in her class. My cautious optimism was waning fast. My dad was with me and sending me encouraging vibes as I think he could tell I was rapidly slipping into panic mode. Then arrived Michelle – a beautiful and kind lady with a friendly smile. “Peter! We’ve been waiting for you!”. Followed by a long discussion on Peter’s support at school, how to get him in and out of school, and much more. She was the angel I needed at that moment in time, she gave me hope that he was not getting lost in the system. She runs the special needs program and remembered all my “parental demands” for Peter and how we would work together. I think if I could have just leaned in and hugged her I would have!!
First day of school. Peter happily got in the car. Excitedly got out. The staff met him outside the back side of the school to escort him in. With a great sense of command he marched right into school and never looked back once! “Bye Peter!” …..nothing……”Bye Peter, have a great day!”…..nothing……”Peter, I love you!!!” ……and he was gone through the doors. I got in the car, choked back a few bittersweet tears, picked up my Starbucks and went home to let the conflicting emotions swirl through me. Joy, excitement, apprehension, pride, fear, anxiety, LOVE …..all jumbled up inside!! Eagerly got to school to pick him up. Michelle walked him out to the car – with a big smile he ran out and into my arms. “Oh, Peter had a great day!” – then the tears welled up again! He was happy, confident, excited – a huge smile from ear to floppy ear!

Peter outside WRE for first day of Kindergarten….such a handsome little dude!

Second day of school. Peter tested out the “Mama!” and leg grabbing routine. My heart sunk. John held his hand and guided him towards the school door. He looked so little with his giant tote bag. Disappeared again behind the doors. I was scared again and very eager to be the one to pick him up. He raced out of the doors again, big smile on his face and full of hugs.
Third day of school. Pulled into the parking lot, Peter looked out the window and exclaimed a loud “YEAH!!!” He was so happy to be there! And every day since then has been the same……he is happy to get there, participating well in class, following routines, practicing letters and sounds. He is so far behind his peers, but what he lacks in ability at this point he makes up for in joy and eagerness. The support staff has done a truly EXCEPTIONAL job at ensuring he is fully included – down to working with the teacher so she will know how to include him and help him succeed. Peter is truly happy at school!
To support Peter’s fully inclusion into his class and school – acknowledging his differences but embracing him as a peer – the staff is sending out a letter to his classmates that I wrote. Consider it a “Welcome to Peter” letter!

Hello Morning Kindergarten Parents! 

My name is Catherine Krause and my son Peter is in Kindergarten with your child – and we are looking forward to a wonderful Kindergarten experience! My husband, John, and I wanted to send you this quick letter to introduce ourselves and our son Peter to you.  

Peter has Down syndrome and several health challenges that have come with it. Down syndrome is the most common chromosomal variation in humans, occurring in about 1 of 733 live births. Many of you may already know someone with Down syndrome! There are common assumptions about individuals with Down syndrome – that they are always happy and very stubborn. In our case that is almost always true! As with typical kids, children with Down syndrome have different strengths and weaknesses, likes and dislikes, and have the full range of emotions although often they have a gift to find the good in any situation. As a matter of fact, children with Down syndrome – while they share many physical traits – are actually a lot more like their family than other individuals with Down syndrome. 

Peter is our fifth child, and older brother to his best buddy Gretchen. In addition to Down syndrome, Peter has had various medical challenges that have slowed his development down and kept him out of school for extended periods of time. We are hoping this year will be different! As a result Peter is still working on verbal skills as well as catching up with the basics such as letters, numbers and colors. Short in stature but the with physical strength of a bull, we realize he is clearly different even to the eyes of young children. Your children may have made a comment about Peter, or observed that there is someone in their class that isn’t yet keeping up. We ask that you please be open with your child as we don’t want to ignore Peter’s differences. We ask too that you also help your child understand that Peter is more alike than different, and that he sometimes has special needs even they can help with. In pre-school he had a group of girls that took turns holding his hand to make sure he got to the playground instead of trying to check out the other classes! He had another little friend that loved to “catch” Peter at the bottom of the slide and pointed the way back to the ladder. I know Mrs. Nelson can provide guidance for the children as necessary, but my hope is that all children will feel comfortable interacting with Peter.  If you have any questions about Down syndrome or Peter specifically that would help build appropriate awareness by all means please reach out to us at KrauseBears@gmail.com or on my cell at 466-XXXX, as we would be happy to provide any information that you need. As parents we truly believe that building positive awareness in all of our children will make the world a better place! 

While Peter is not yet at the level of his peers, I would like to share some information that I hope will help your child find a connection with Peter. At this point he is working on verbal skills and will shout our phrases like “I got it” when playing ball, “I see you” when playing peek-a-boo, or “what is that?” when exploring his environment. He uses basic sign language as well as pointing or other sounds to communicate. He will often try to get your attention by a gentle pat on the back or arm. He is a very social child, often trying to make friends where ever we go. He is currently undergoing chemotherapy and a few days a month is on medication that makes him a bit moody. We will be letting Mrs. Nelson know when that time of the month is coming up so she is aware he may be slightly grumpier. This last school year he worked very hard on learning class room routines with the hopes that he can function more easily with his peers in the class. We spent all summer working on playground skills so that he would have a chance to play with his classmates – he loves to go up and down the slide! While we haven’t mastered swinging on his own, he loves to race cars, play ball, chase others and generally just have a lot of fun. He helps his little sister’s dolls go to sleep by rocking them, and has recently decided he is a dog as he chases us on all fours barking. Peter loves yogurt, ice cream and hot dogs! But most of all Peter loves to be in the swimming pool, play with his trains, dance to music, throw ball, and love on dogs. We think one day he will work at a vets office because dogs are the reason he sneaks out the back door of our house and goes to our neighbor’s – her dog is bigger than ours! 

What are my hopes for Peter? My dreams for Peter are the same as for all my children – to be happy! I wish for him good friends, an opportunity to contribute to our community, and the freedom to chase his dreams! These school years are foundational years for all our children, and I hope that together our children will have the opportunity to know truth, create beauty, and practice goodness together through a constant sense of wonder and discovery! 

While Peter goes in and out of the back door (we joke with our kids that it is to avoid the paparazzi!) we look forward to getting to know you and your children too!

I know many times I have shared my fears about Peter being truly included, making friends, enjoying sleep overs – in many ways more so because of all his health challenges than his Down syndrome. Regardless it is a worry I have had since he was tiny baby bear in my tummy kicking to remind me he was there.
John went to pick Peter up from school last week. Instead of our joyful little boy running out into his arms came support staff asking him to please step inside. Given that we have experience with a “come pick up your kid” moments….lots of them……John sighed. He got to the gym with a few adults, Peter, and another child. A man walked up to him, introduced himself as the father of Peter’s classmate. He shared with John how his son comes home everyday after school and talks about Peter. He went on to say that he wanted to meet John as they are hoping Peter can come over for a playdate. You know what happened when John told me? Bad mom started off with “Are you sure it was Peter??!!” ….followed by a steady flow of tears that kept going and going and going. I am welling up just writing this! A short month into his kindergarten year Peter has made a little buddy who wants him to come over and play. Way to go Peter!!
We truly feel so blessed and so thankful that Peter has had such a great start to Kindergarten, and we know it would not be possible without Michelle and her staff that advocate for Peter when we are not with him.
xoxo
Catherine