Ds Awareness Day#17: Everyone has a story


Ds Awareness Day#17: Everyone has a story…..

Today I am going to veer off course a tad from the awareness posts you’ve been reading. So far I’ve been posting snippets about Down syndrome in general, and sharing tidbits about Peter. Today I simply want to share that everyone has a story….and, no two stories are the same. 

The story of one family touched by Down syndrome will be very different from the story of another. As hard as it may be sometimes, we must not compare or judge. In many cases the journey the families are on is an unexpected journey, but one filled with moments never before dreamed of. The following poem is often shared in the special needs communities, and one that captures simply and beautifully the experience that many have when they find their life detoured from what they planned and onto a whole new path.


Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

We are all on our own personal path through life. Some may look alike, and some may differ significantly. We need to be sure to not judge or minimize the journey of others. Nor must we compare or doubt our own journey. But, we can share. There is beauty in the story telling of journeys, the sharing of stories, the learning together from each other.

So, next time you meet someone with Down syndrome, I invite you to hear their story.  And to help you get started I invite you to check out the DownSyndrome.Love channel on YouTube. John and I were interviewed last year, and the interview was recently posted. There are also other families sharing their stories, and I think you’ll see how different our kids can be, but how alike is our description of the joy they have brought to our lives.



so grateful for so much!

It has been two months since I shut off my work computer for the last time. Gosh that day was hard! I actually cried in ways I didn’t think were possible. I wasn’t prepared for how hard it would be to walk away from a career I started way back in 1996 – a career that has provided for my family in so many ways. Personally there were so many experiences, friendships, challenges, rewards and everything in between. Work really was the constant in my life through all the ups and downs that we’ve weathered over the years.

...life feels double good! ...

…life feels double good! …

This has been my first summer off with the kids…..ever! And, I love it! I have not felt this relaxed in as long as I can remember. It is the first time I haven’t felt torn in too many directions, trying so hard to give everything my best yet feeling like I was falling short on all sides. I started off in the blaze of glory fitting in all the fun I could into a week – as if I thought the time was going to run out. End of June arrived, and I was tired! July has been much calmer, and realizing just how much joy we get from a morning at the library, an afternoon at the pool, a rainy day playing card games and board games, or those quiet moments when everyone is sucked in by the book they are reading. It really has been great!

Chilling out on a rainy day...

Chilling out on a rainy day…

A day at the ranch....love Rock Ledge Ranch!

A day at the ranch….love Rock Ledge Ranch!

It was all fun and games, until Gretchen beat them - again!

It was all fun and games, until Gretchen beat them – again!

National Geographic photographer in training!

National Geographic photographer in training!

Realizing now that I never hit POST on my May update with Peter…..I’ll just do a quick run down. Peter gave us a scare in May. After being healthy for so long, he woke up one morning struggling to breath. We rushed off to the ER, and after some back and forth with the doctors, the decision was made to admit him. While he is no longer on chemo, which works to his advantage, he has a history of going south fast when it comes to respiratory issues. Peter continued to deteriorate after admissions, and was really close to getting moved into the PICU. I admit, flashbacks to the months on the ventilator rushed into my mind. I didn’t realize just how raw my emotions were around that period of time. By the grace of God, Peter turned the corner and we were able to discharge just in time to celebrate his 8th birthday at home. In his short life he has spent months in the hospital, including several holidays, but has always pulled off having a birthday at home. He cut it way too close on this one!

A few days late - but celebrating his birthday with his 1st grade class! Happy 8th Birthday!

A few days late – but celebrating his birthday with his 1st grade class! Happy 8th Birthday!

Peter has participated in a day camp through our city this summer, and loved it! It was important to me to have him keep up the skill of a structured day, and functioning in a group of peers – not his siblings – to avoid some of the regression we’ve had in prior years. It was well worth it – Peter has had the time of his life! He has made new friends, gone to the wave pool every week, and field trips once a week. He has kept up the skill of working well in a school-like setting. Suffice to say, he beat the rest of us out when it comes to fun. Throw in that once he gets home he wants to play more, swim more, and have more fun – the kid is a 24/7 party!

Excited about summer camp!

Excited about summer camp!

Peter now has tutoring two days a week, for 1.5 hours each session. My heart sunk when it appeared he could academically do very little – so discouraging! However, I think his brilliance is just starting to emerge in those sessions. A matter of a new teacher and them getting to know each other. What Peter has shown so far – he is a good listener, he understands how to function in a class setting, he always uses his manners, he tries VERY HARD at all that is put in front of him while following all instructions, and he has an amazing attention span. Just a few years back, it seemed getting him to sit in a classroom chair for more than a couple of minutes was an impossibility. Now the teacher is reporting she almost has to insist for Peter to take breaks, but given the choice he would just work non-stop for the full session.   I take that and translate to adulthood – who would not want to hire a great looking kid with good manners, good listening skills, good focus and able to follow directions? We have academic skills to work on – but those soft skills are not easy to teach, and he is nailing them. Proud mama moment!

Life skills.....mastering grocery shopping. He did it all, including swiping my card, with very little guidance.....and when all done threw his arms up in the airs and triumphantly shouted "I DID IT!". Now I take him weekly for him to do a short trip with a list of four items. Practice, practice, practice!

Life skills…..mastering grocery shopping. He did it all, including swiping my card, with very little guidance…..and when all done threw his arms up in the airs and triumphantly shouted “I DID IT!”. Now I take him weekly for him to do a short trip with a list of four items. Practice, practice, practice!

Peter’s receptive language skills are strong, but the speech apraxia has made it so hard for him to communicate what he knows. He has the language and ability to express his basic needs, or interact with his siblings. But formulating a phrase or even being able to answer questions is such a challenge. Despite this, Peter has such a great attitude. I would be so frustrated to have thoughts and no way to express them, yet he smiles and perseveres on. The lack of speech makes it hard for him to make friends, but I am often overwhelmed by the kindness I see from his schoolmates. I think “Hi Peter!” may be the most used phrase at the school. This carries outside of school, as I have witnessed a line of girls form next to the little pool at our club, and the pretty little girls of all ages squeak out “Hi Peter!…..remember me?!” He still plays hard to get, so the squeaks get higher pitched until Peter returns with a “yes” and the girls smile big and giggle with excitement.

Peter is still struggling with writing. He likes to try to trace letters on the iPad with his finger, but anything with a writing instrument is a real challenge. This fine motor skill has always been a challenge, but I think too that he has sensory issues with his hands that have made it even harder. I don’t know if this is just part of his sensory processing disorder, or as a result of nerve damage from the chemo, or a combination of both. Since he started chemo, he is not able to get through the night without waking up and wanting to be cuddled/comforted. During this half awake/half asleep stage, he will often rub his hands on different surfaces as if seeking some input. When he finally does it long enough, he will fall into deep sleep again. Brushing, joint compressions, weighted blanket, and other techniques we’ve used have not yet got us to the point that he can sleep through the night. Which of course means John and I are not getting a solid night sleep either. John functions on little sleep much better than I do – and is good about trying to get Peter back into his bed. I admit, in my zombie like state, I hold him closely to me in bed and pray for the hand rubbing to stop so that we can both be in deep sleep.

Finger tracing is coming along.....writing with a pen - well, need more practice!

Finger tracing is coming along…..writing with a pen – well, need more practice!

Peter will be starting second grade in just a few weeks. And I know the highlight of his day will be running down to the bus every morning. Peter has switched up physical therapy a bit, and is now doing it in a gym like setting. He loves it! He has also shown that he has a great skill of running while kicking the ball in a soccer like way. He also has a killer left handed bat and great accuracy when batting a ball off a t-ball stand. So, I am thinking we know what sports to try this school year. Peter has also demonstrated a great ability to hold his breath and float in the pool – often inflicting instant fear in those around him – until he whips his head back up with a big smile. Yeah, not really planning on capitalizing on the “I fake a great corpse” skill, but it has helped with working on his swimming skills. All in due time!

...so excited to jump on the bus and head off to school!

…so excited to jump on the bus and head off to school!

Hanging at the pool....and scaring a few folks when he  decides to float like a corpse!

Hanging at the pool….and scaring a few folks when he decides to float like a corpse!

Of course, Peter is not our only child despite the thesis like updates I can write on his adventures!

Peter, Jack, Tommy, Alexandra, Michael, Gretchen....and almost all are smiling!

Peter, Jack, Tommy, Alexandra, Michael, Gretchen….and almost all are smiling!

So here you go –

Alexandra is moving out and into her own apartment next week. So excited for her! She worked a ton of hours during this year off, and will be starting college back up next month. Her goal is to get into nursing, and hopes to one day work in pediatric oncology. She also decided to make some other changes, and dyed her hair dark brown. Looks great on her – but she does stick out in family pictures! We are so excited what the future will bring to Alexandra as she leaves the nest.

Alexandra - rocking her dark do!

Alexandra – rocking her dark do!

Michael just got back from a mission trip, and is getting ready for his senior year of high school. Where did the time go? He is academically doing well, and hopes to go off to engineering school, where I know he will do great! Still much work to be done on the college search front….sigh! Michael also learned how hard it is to break into the job market as a high schooler – it is not the market it once was, as he competed against college kids and adults. He did get a job at a local Italian eatery, and plans to keep working through the school year. We are very proud of him!

First day on the new job - and looking good!

First day on the new job – and looking good!

Jack completed his first year at Thomas MacLaren with Michael. He picked up the cello easily, but would rather pretend Latin is not a subject he needs to participate in. He had one of the lead roles in his class play for Public Performance, and memorized some great poems which he delivered flawlessly with a British accent. He played two seasons of football, and is hoping to join the team for our home middle school within our district.  Jack dreams of being a computer and game designer/programmer, and given that he has taught himself basic programming, I think he will reach his dreams!

Tommy and Jack - the dynamic duo!

Tommy and Jack – the dynamic duo!

Tommy completed 4th grade at Corpus Christi. Academically he performed marvelously, but his highlight were the friends he enjoyed and their “club”….a very well formed, organized, and democratically governed club. Tommy played one season of soccer, and hopes to keep it up this next year. Tommy and Gretchen will be homeschooled next year, and then we will decide if he joins Jack at Thomas MacLaren or explore other options. I am very excited to have this time with them. Tommy continues in Scouting (although I admit I fell behind on activities), and he was awarded with Outstanding Scout of the Year award for his great attitude, hard work, and continued top sales in popcorn again. He really is gifted when it comes to door to door sales – I’m impressed! I am excited to have Tommy continue to grow and participate in what he enjoys most – contributing to our community in so many different ways.

Peter and Gretchen are so blessed to have each other.....one day she will appreciate all his hugs!

Peter and Gretchen are so blessed to have each other…..one day she will appreciate all his hugs!

Gretchen completed pre-school at Corpus Christi, where she loved her teachers and friends. She is a boisterous contributor to all activities, and learned much to prepare her for  kindergarten. She scored very well in standardized testing, and is excited to be homeschooled this next year. Sadly, after 15 years, we made the decision to leave the school. We have much history, wonderful memories, and great friendships formed at that school – but the administration’s mishandling of issues has lead us to no longer feel it is the best place for our children. It was a difficult decision, but one we feel very confident in. This summer Gretchen took swim lessons – and quickly became a little fish. We are hoping to pick up with more lessons during the school year, but she is begging to do ballet. Now, gymnastics lasted one session before she decided she was bored with it. Ice skating lasted one session before she decided she really didn’t like falling on ice. But, her great grandmother was a very talented ballet dancer (as my mother shared with me). The gene missed me, as my mom was encouraged by my ballet teacher to not waste her money on me (and I heard it….sniff sniff). But, little G may be the recipient of this gene and find her passion!

Gretchen - beach bum in Colorado!

Gretchen – beach bum in Colorado!

Last July, John re-entered the job market, and it has been an amazing year! He loves the company and his co-workers, and they clearly feel the same way about him. Doors continue to open, and he is excited to grow and advance. He also coached the St. Mary’s girls golf team again this spring – and once again had his top player make it to state championship.

John getting some golf in for Fathers Day!

John getting some golf in for Fathers Day!

Check out that ball! Clearly John's genetics at play!

Check out that ball! Clearly John’s genetics at play!

John has been working hard, but was able to get a movie night at the pool with us - and all the kids were so excited!

John has been working hard, but was able to get a movie night at the pool with us – and all the kids were so excited!

I am sure there is much more to share – but this update as reached the “Mama are you done?” stage and escalating emotions between the kids. It is sort of like when kids can ignore you until you are on the phone, then must talk to you. Or avoid you until you go to the bathroom, and then their finger tips and lips slip under the door as they insist there is a crisis that needs immediate attention. Or their fine tuned radar-like skills that sense when you’ve tried to enter stealth mode and tip toe off to another room just to read for a few minutes, and they intercept before you reach your destination. Yeah….like all those things.

...and I did get some adult time - good fun, great company, a little creativity and sipping wine....

…and I did get some adult time – good fun, great company, a little creativity and sipping wine….

So my last thing….and you knew this was coming…..in less than 5 short weeks, we will be attending our 9th Buddy Walk in honor of Peter. There is much more information on our page, so we invite you to visit our page and consider joining us as a walker, a virtual walker and/or a donor. Every dollar raised goes to support individuals with Down syndrome and their families in our community. From pre-natal diagnosis support through adulthood, so many families benefit from the services offered by the CSDSA – all of which is possible by the funds raised once a year through the Buddy Walk. We hope that you can join us!

Team Peter Bear – Buddy Walk 2015!

With much love and gratitude for all the support each one of you has given us on our rollercoaster of life!

What really matters - FAMILY!

What really matters – FAMILY!



In case the link didn’t work – please copy and paste this URL into your web browser.   http://csdsa.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=5010


…just too busy…

Today I turn 45…..yikes! I get for some of you this sounds old, for some this feels young, and for others it might be right around where you are too.  To me it feels like such a big number…..at the wise old age of 7, I had a plan for what life should look like – by 15 I should know exactly what I am doing with my life and a solid plan for execution, by 22 I better have my act together with a good job, great husband and maybe kids. And well, I better have knocked off everything from my life-to-do list by 40 because it was all downhill after that. I was at the time in my life when my parents’ friends were turning 40 and there were a lot of “Over the Hill” themed parties, clearly I was impressionable.

Well, things on this wild journey did not go as planned! At 15 I was convinced I wanted to be a banker or international business woman racing across the world. By 22 I figured out that I was really bored by accounting, and rather do something else with my life. I was in an entry level job, a great boyfriend (now my husband) and no kids. When I turned 40 I had a job I loved, a great husband and 6 beautiful kids – including one just a few months old that reminded me I better not be over the hill because I had a lot I still wanted to do! Five years later I reflect on just how much has happened in that window of time – the kids grew up, Peter beat cancer (just barely), we lost my mother and John’s father to cancer, I worked hard – really hard – and we are five years wiser, seasoned, and slightly weathered.

Pagosa Springs - "Just Too Busy"

Pagosa Springs – “Just Too Busy”

A few weeks back I was on Spring Break in Pagosa Springs with 5 of the kiddos. I posted a picture of my view from the condo’s deck – overlooking the water with majestic mountains on the horizon and clear blue skies. My mug of hot chocolate and a good book as my companions. The kids were too busy loving cable TV which we don’t have at home. A friend replied to my FaceBook post asking me what I was reading – I replied with “Just Too Busy” by Joanne Kraft. She looked it up, and replied with “…well, I am not sure you can take a sabbatical year but you can always do mini version of that….”. I chuckled. Just a few days earlier, as John and I drove to our local Starbucks (I know…not a surprise), I just looked over at him and said “I just can’t do this anymore….I am exhausted, I go to bed at night accumulating more and more regrets of time lost where I should be doing more with the kids…I can’t keep trying to do it all…..you and the kids are the most important thing to me, yet you get the least and worst part of me at the end of the day”. Following a quizzical look I blurted out “I’m quitting! I’m done, I need a break, I want to be a better mom and wife…..I don’t know what it is going to take but I need to do this”.  Silence. Then in my charming way said “Dave Ramsey said that if you need to work three jobs to support us, you can do that – I need to be home….”. When in doubt – quote Dave! Silence. And then all that came out was “OK”.  Not quite what I was expecting from my highly analytical thinker that often conflicts with my quick decision making by instinct and gut sense.

So there you go – last night I turned in my written resignation. One of the easiest yet hardest things I have done. I love my job. I love my co-workers. Many of them were the long distance, reliable, cheerleading team that sent me words of encouragement during the darkest times of Peter’s cancer treatment. And sometimes they were the non-sugarcoated and honest words that needed to be said –  “Remember today that Peter needs you to stay strong”,    “…this is not about you, this is about Peter, and you need to fight for him today…”. Co-workers that became friends and grew into ‘brothers and sisters’  that called it like they saw it and still embraced me in those dark moments. Those dark moments when I needed to scream at endless barrage of Peter’s medical struggles, my frustration when I felt there was nothing I could do to fix things, and my anxious moments when I feared I was not strong enough to cope with losing him. I have been so blessed to have a job that challenged me while at the same time generously providing for my family and empowering me to make the decisions that were best for them at the time. And it was with that empowerment that I have made this change. I have worked in some capacity for 30 of the last 32 years – flash back to the 80’s and I started off working at a video rental club at 13 – yeah, this is a crazy change into unchartered territory!

Peter's angel...Michelle Wyeno

Peter’s angel…Michelle Wyeno

Last month we lost Peter’s Special Education teacher to cancer. Not only was it a hard loss for us who relied on her wisdom, caring, and encouragement – but it is a huge loss for this world. Michelle was truly an angel that slipped down from heaven to bring grace to those around her. Michelle’s funeral was amazing – and it was the impetus to stop and assess my life. I was, after all, over the hill and rapidly sliding to FORTY-FIVE!  To those closest to me, I have said that the last ten years have been hard, and I am tired. Life has peaks and valleys, but I feel like we’ve been on a never ending rollercoaster, and I want off – give me ”It’s a Small World” gentle ride for a while! This last school year has, in all honesty, been brutal. Stressful, heartbreaking, hurtful, yet a time of needing to fight for our family day in and day out in ways I never thought we would ever have to do. I’m tired, and our family needs a change. Time to course correct.

Peter prepped for open heart surgery at 7 weeks, after 5 weeks in the NICU and a few close calls.

Peter prepped for open heart surgery at 7 weeks, after 5 weeks in the NICU and a few close calls.

Most of my blog entries, when I was actually doing them, were about the ups and downs of Peter’s medical journey. But I want to be sure to state that all my kids are wonderful and amazing and complex and interesting and fun …..I don’t want anyone to think I love and admire one more than another. They all teach me different things and are unique. But let’s face it, Peter has been the one to carry the brunt of life challenges, and we have been in support roles. But, through it all, he led us with a big smile, bear hugs, and lots of ‘thank you’. Thank you?! Yep – little man is grateful for so much every day!  “Hey lady – thank you for accessing my port right the first time” – fist bump!   Or “You checked my genitals one more time to make sure they are still healthy – thank you for the gentle squeeze doc!” – double fist bump on that!   “Dude – that flashlight in my face at 1am tells me you are here to party with me in the Peds Unit – thank you for keeping it fun!” – I’d fist bump if you hadn’t woken me from slumber, but my coordination lacks right now.   “Yo man – thank you for giving me a ride home on the big yellow school bus yet again!” – salute you from my driveway!

"I make bald beautiful!"

“I make bald beautiful!”

So here is what I figured out on my self-imposed life reassessment period – Peter has his sh*t pulled together no matter what the experts say (excuse my French to those that figured out the * is really an “I”). The rest of us whine about being tired and stressed (yes, even my youngest ones have uttered those words and I know they get it from me – “I am soooo streeeesssed ooooout!!”). The rest of us self-pity when we hit a rough patch, or feel that we have been treated unfairly when cosmically all should balance in our favor. I am still waiting for my cosmic reward for birthing 6 kids, and all the extra weight should ‘poof’ disappear.  I’m not saying Peter doesn’t get totally ticked off – he does. When his sister convinces him to let her hold his iPad, only to take over what is being watched/played or better yet outrun him to where he has no say at all on the iPad – little man is really ticked off. Cut the man some slack – he is human…..super human, but human none the less.

"Dude - do I rock these hospital gowns or what?!"

“Dude – do I rock these hospital gowns or what?!”

What is Peter’s secret sauce to life? He has his priorities in the right place. At work we call those super important things “blue chips” – poker players won’t have the “huh?!” I had the first time I heard that term. Guess what – I think I have 297 blue chips to balance every day. Yep…that is me ….no white chips, no red chips, my plate of life is full of blue chips. God may not give you more than you can handle, but someone else is slipping their blue chips onto my plate! A couple of years ago I tried to do a mini-sabbatical. I stepped down from almost all my volunteer/extra-curricular activities. It helped, but it was not enough. I still had too many “blue chips” – I didn’t step far enough away to see how much I piled on my plate.  Peter has three blue chips – to show gratitude, to love and forgive fully, and to enjoy the ride. Smile at the world, and it will smile back – right? Don’t tell Peter if you disagree – it is working for him. At some heart and soul level, Peter knows what the rest of take a lifetime to learn – when we start in a place of love and gratitude, how can you not live by what truly matters?

At the end of our lives, we will not regret time spent with those we love.

At the end of our lives, we will not regret time spent with those we love.

If tomorrow were my last day on earth, I would have so much to be thankful for….but I would want to change what I’ve been doing, and live my last day with those I love the most. I don’t know when my last day is – but it is time for me to take myself down to three blue chips, catch my breath, and create more of those crazy memories I get to laugh about on my final day.

I'm sorry for the drop in stock price....mea culpa!

I’m sorry for the drop in stock price….mea culpa!

This is not going to be easy. There will be good days and bad days. Some may want to worry about the effect on the economy of my significantly reduced Starbucks expenditure. I am thankful, so thankful, to have the opportunity now to focus on my family.  I vacillated on whether to go here next – but I have decided to…..to all you mama’s out there – this is just my story and my place in the world today. This is not about leaning in vs. opting out. This is not about staying at home or working. I’ve been cruelly judged – and it hurts – and I don’t want to do the same to you. For many years my heart yearned to be home, but I wasn’t. My soul trusted that I was where I needed to be. Trust that where ever you are now, this is where you are meant to be, and I will meet you right there – no judgment.

The blue chip in life....

My blue chip.

A friend once told me that people come into our life for a reason, a season or a lifetime. I think too that where we are is for a reason, a season, or a lifetime. Only God truly knows. I don’t know what decisions we will be making a year from now, but I am thankful that today I get to take this huge leap, and I am so looking forward to all the new and crazy memories our family will be making.  More to come!



Graduation and life lessons…..

We have a graduate! This week Peter graduated from kindergarten (again). I felt like a bit of a cheat letting him go through the ceremony again. But this time he is moving up to 1st grade! The Peter who graduated this year has come such a long way from the Peter that graduated last year. I am so excited to see where he is a year from now! Here is he is with K teacher Mrs. Mohr.

Waving good-bye to Kindergarten with Mrs. Mohr......Peter was awarded "The Most Improved Student" award this year! - June 2014

Waving good-bye to Kindergarten with Mrs. Mohr……Peter was awarded “The Most Improved Student” award this year! – June 2014

Peter will start summer school tutoring next week – so 3 hrs a week for three weeks – not a huge amount of time, but I am hoping to sit in and learn what we should keep up with so he is ready for next school year. I am so excited that he will be tutored by his Special Ed teacher Mrs. Wyeno as I know he will learn a lot in a short time. Mrs. Wyeno and her team have done such a great job with Peter this year. In honor of this, I nominated her for an award through the Colorado Springs Down Syndrome Association – and she was selected! The timing was perfect as we were able to give her the award on the same day we celebrated Peter’s birthday. Here is Peter with Mrs. Wyeno.

Loving Mrs. Wyeno! - June 2014

Loving Mrs. Wyeno! – June 2014

The family is almost complete for the summer! It has been crazy leading into the summer ….and not sure I have recovered yet. I had a couple of business trips leading into a trip to Peru. Since I am in the process of updating my bucket list….things come on and off…..I was so excited on a trip to San Francisco to run across the Golden Gate Bridge. I know, sounds dorky, but it was amazing! The night view from the bridge to the city was breathtaking! This is my favorite photo, but it does not do the view justice.

San Francisco @ night from the Golden Gate Bridge - May 2014

San Francisco @ night from the Golden Gate Bridge – May 2014

After getting back from San Francisco, I popped up to Ft. Collins to pick up Alexandra and bring her home – yay! I still remember the day that she moved into the dorms….there were all these young, strong, super-friendly college boys to help carry stuff in. Guess what? They are NOT there when you move out! Knowing that most students leave with more than they arrived with, I would really think they need to staff up at move out time. After the work out of loading up the van, we were on our way home. So glad to have my baby girl home! Isn’t she so cute?!

With my baby girl, all packed up, and going home! - May 2014

With my baby girl, all packed up, and going home! – May 2014

The next morning I boarded a plane (again) and did the trek down to Lima, Peru. It was a very busy week – cleaning, packing, packing, packing, more packing, shipping, and then packing some more. Busy but very productive! All work and no fun? Nah! Was thrilled to see some friends, get some outside time with my dad, a few runs along the coast with amazing views of the ocean, and my morning Starbucks frap WITH an alfajor! Can’t beat that!


Frap, alfajor and soaking in the ocean breeze.....doesn't get much better! - May 2014

Frap, alfajor and soaking in the ocean breeze…..doesn’t get much better! – May 2014

I spent hours, and hours, and hours going through old pictures that were in boxes. I didn’t even touch the ones that were in albums. Those are being shipped to to Colorado, and we can tackle them later. I think I went through thousands of pictures! It was fun to see the memories captured from times past – these were some of my favorites!


With Roger @ our beach house in Ancon - circa 1974.

With Roger @ our beach house in Ancon – circa 1974.

@ 1 month old hanging out in the incubator - party with the premies! - May 1970

@ 1 month old hanging out in the incubator – party with the premies! – May 1970

JPII - will remember that moment for ever!

JPII – will remember that moment for ever!

Look what I got for Christmas! A unhappy-Rog-the-podge doll! - Christmas 1971

Look what I got for Christmas! A unhappy-Rog-the-podge doll! – Christmas 1971

Mr. & Mrs. Alan Mortimer - September 1967

Mr. & Mrs. Alan Mortimer – September 1967

Though this process I learned a few things…..

  1. We can take hundreds of pictures of a single event, but it takes only a single picture to bring back hundreds of memories. The photographs we take record the memories in that moment, and we use them to share our immediate history with friends and family. But as time passes those artistic shots of trees, beaches, monuments, and so on lose their meaning. It is the photographs with loved ones that we will continue to look at over and over again. Now, given the fact that I have near 30,000 digital photos on my computer and hundreds if not more printed but not recorded – reality hit me hard! I need to get those memories recorded before they are forgotten, but I can do it with just a few shots with loved ones and not the hundreds of shots for each event as I used to. Now to get started!
  2. Like photographs, over our lifetime we accumulate so much. To paraphrase Madonna from the 80’s – we really do live in a material world! In all honesty, what we accumulate for the most part is for us and for that moment in time. The Halloween decorations that come out once a year, the growing number of knick-knacks on shelves, the papers, magazines, clippings that we save because we don’t want to throw them out ‘just in case’. I would trade all my material goods for just one more day with my mom. It is time to remember where material items really fall in the priority of life. Some items will be passed down generation to generation, but so much more loses it’s value when the person enjoying them is no longer with us. Like photographs, it is only a few items that hold big stories!
  3. I have told my kids for years that people will forget the things you did and the things you said, but they will never forget how you made them feel. I still believe this to be true. But what I have learned is that what we say about ourselves influences how we will be remembered. This may sound so silly, but for as long as I can remember my mother complained about her weight. On good days she would reference herself as “pleasantly plump” and easy to cuddle with. The further back I go in memories, the younger my mother looks, but always pleasantly plump. As I went through the photographs I was amazed to see just how slender she was and for so many years. I remembered her the way she described herself, not the way she looked. I am so aware of how self-deprecating I am in front of my kids, and hope that I can turn the tide so they will remember me as I would like to be remembered and not through my lenses of self criticism.

There you go – those are the wisdoms I graduated with this week!

This time tomorrow our Colorado Springs based (or semi-based) family will be complete! My dad is flying up tonight – and we are all so excited to start the summer with him. I hope he remembers to bring his Energizer batteries because these kids have big dreams!




Eeek…..so long?! Update and Invite!

Yikes – where did the time go?!

Quick update …..

Alexandra graduated from St. Mary’s High School in May. She is now working as an office assistant at NTSOC and will be heading off to Colorado State University in August. The plan is to do her undergraduate in Psychology with an emphasis in Brain, Mind, and Behavior – then moving into a Masters in Occupational Therapy. She hopes one day to work with kids like Peter – and I know she would be great at it!


Michael completed his Confirmation and wrapped up Freshman year of HS, and was cleared for non-stressful exercise with his knee! Yay! So no sports, but much to his disdain he can now walk the dog again. We really are so fortunate that he is healing well although he still has residual issues with his thigh/hip. We hope they get better and he can pick up with sports in the Fall.


Jack took silver in wrestling – yay! He wrapped up 4th grade with a 10th grade reading level….wow!……and will read about anything you put in front of him. He is enjoying his Kindle but can still be found with his nose in a good old paperback book. Given the relentless energy he has, it is great to see him chill with a book!



Tommy’s enjoyed his First Holy Communion, but I think the highlight of his school year was scouting. He had so much fun! His enthusiasm was clear when he pounded the pavement in cold weather collecting food for the local food bank. He collected almost 500 lbs!! Way to go little dude!!



Peter wrapped up kindergarten and loved it! He will be repeating it again next year in an all day setting as he really needs to catch up academically. He did three weeks of summer school of which i think the highlight was riding the bus. He was so excited! His energy continues to increase post-chemo but he likes to freak me out every once in a while telling me his hip, toes or fingers hurt. Praying he continues in remission! He still goes in once a month for labs given that he is at the start of the new shorter protocol and we need to make sure he stays healthy. This spring he started swim lessons which he loved – but still will opt to play in the little kids pool this summer!



And last but not least is Gretchen – she is so precocious! She has discovered crayons but likes to color everything the same color and the lines are a lose guideline to which she will not be constrained. Surrounded by brothers and boys in the neighborhood – she is often the little girl in a dress and pretty shoes trying to scale a tree or play set. Her favorite pass time is bossing her brothers around. Not sure where she gets that from!



On the family side – my father arrived in mid-May. He is starting to make Colorado Springs is part time home and we are loving having him here. It is such a treat!! The kids are all over him and he has been a huge help with our crazy schedules. Now have to work on him to be here longer and longer!

Guess what time it is?! Buddy Walk time!! We are so excited to have Peter do this walk healthy this year – and hope to see him running across the line in his own unique running style (makes us smile it is so cute!). For a second year UnitedHealthcare is sponsoring the Buddy Walk and our Team Peter Bear. YAY! So we invite you to please consider walking and/or sponsoring our team this year. As you all know the Colorado Springs Down Syndrome Association is near and dear to my heart – and we try every year to raise more and more to support such a wonderful organization that offers so much to families in our community and the surrounding community.  CLICK HERE to get to our team page or copy and paste the below link……We hope to see you there!!



There you are……here we are!

“There you are!”……which coming from Peter more often sounds like “Tha ya-arrrrr” or “Thar you is” and is heard often around our house as he goes off in search of the next person to sit with, play with, snuggle with, or just give a hug followed by a kiss and a pat of the back. Then the pitter patter of his footsteps as he heads off to find the next target of his attention.  Hey! Here we are!! All 8 of us Krause bears are here riding the roller coaster of life. This week alone can be measured in numbers. Twelve inches of hair, two sick adults, four golf practices, three sick kids, two wrestling practices, one pack meeting, two wrestling tournaments, one ER visit and a surgery. Aside from our normal school, work, therapy and doctor appointments, this week was a little extra chaotic.
I feel neglectful not even posting on FaceBook for World Down Syndrome Day on March 21st – a day which around the world celebration, recognition and awareness is brought to Down syndrome. Why 3/21? Because individuals with Down syndrome have 3 of the 21st chromosome. On one hand I think we celebrate, recognize and bring awareness every day – every where that Peter goes is an opportunity to do each. We often find ourselves discussing Down syndrome even when Peter is not around. So in some ways it is 3/21 every day. But on the other hand, because we celebrate all of our children every day (and that can be hard some times!), our minds are often on the challenges of life. I can guarantee that I have spent a heck of a lot more time thinking about cancer and other medical challenges, than I have about Down syndrome. When I see Peter …..I see Peter. And ultimately that is what we dream of for him. To be celebrated and recognized for the individual that he is every day. Just last week I was at Peter’s school for a musical performance. Which in Kindergarten was 3 songs, performed in under 15 minutes, with very loud music and lyrics on a tape player. The kids moved around and danced, some knew the words, and many more adults with big smiles taking picture, after picture, after picture. On that day Peter was so happy I had come to school. As he marched down the hall from his class to the music room, a pretty girl with dark hair was escorting him. He excitedly waved and called out my name. In the music room the girl stood behind him. Giving him a little direction, she spent a lot more time asking to hug him or asking him for a hug. All of which Peter did with a big smile. After the show, the kids marched back down to class. I waited in the hall to take Peter home. A lady working for the school district stopped on her way out to ask me if I was Peter’s mom. She went on to tell me about how she had asked the tall, pretty girl with dark hair to “give Peter some space” after observing her directing Peter around the class. The girl insisted she needed not to stop, and after a short discussion declared that she need not stop directing Peter because “when I grow up, I am going to marry Peter!” The lady smiled at she told me this, and we commented on training their future husbands at a young age. After she walked away I sat in the quiet of the hall and was filled with gratitude. This young girl made my dreams come true! Why? Because as a 6 year old she celebrates and recognizes Peter for Peter. She doesn’t see a classmate with disabilities that she needs to push around. She sees a handsome young boy with a big smile who will so willingly hug her and hold her hand when she needs it. She feels recognized and celebrated, and in that does the same for Peter. That is what I hope for every day for all individuals regardless of ability!
Peter showing us how he uses the class notebook during conferences (and yes - that is G next to him taking advantage of technology time!)

Peter showing us how he uses the class notebook during conferences (and yes – that is G next to him taking advantage of technology time!)

Peter has taken off since stopping chemo! He is not yet sleeping consistently but there has been some improvement. More recently he seems to be enjoying food again – maybe he no longer has the bad flavor in his mouth. He is vocalizing a lot more – which we hope will lead to some strides in his communication. His energy level is through the roof. And amazingly he is doing things like bending both knees when reaching down to pick something up – finally! He is willing to walk up and down the stairs as opposed to crawling up and down. It is exciting to think of where we go from here! We have had one hospitalization and one ER visit since he stopped – the ER visit was this last week because he was throwing up something awful. He is on the mend now. He had an oncology appointment this week and they let us know that within the next two to three weeks they would like to remove the port. Wow! We are really there!!
In the spirit of reaching the light at the end of the tunnel with Peter’s treatment – to honor his battle won, and the cancer battle my mother lost – today I chopped off twelve inches of hair which I will be donating to have made into wigs for children who have lost their hair due to cancer or other serious medical challenges. In some ways it seems so minor. While Peter never cared that he had no hair, I know for some children that is so isolating. My mother never got far enough in her battle against the lung cancer to lose her hair, but we know she thought about it. As we went through her closets at home, we found a small plastic bag that contained some hair she had cut and put aside. She wanted my father to use that to order her a wig that matched her hair color. It is hard supporting a family member or friend through cancer – there is often so little we can do – but I hope that a wig can lift some spirits to whomever receives it. Twelve more inches and another donation!
12 inches to a good cause!

12 inches to a good cause!

I get many messages asking me how Michael is doing – and I am happy to report he is doing amazingly well! The surgery was a success – with two large pieces of bone reattached to the bottom of his femur. The days following the surgery were painful for Michael, and heart breaking for those of us who could not take the pain away. At a week he was cleared to go back to school, and was thrilled to do so. I thought my nerves were shot going through this, but I was wrong. How do I know that? My whole body tenses up when I see Michael whipping around the corner on his crutches, and racing down the straight stretch in long fast strides that go from zero to sixty in about 2.8 seconds! And when that is not enough, he will put the crutches aside and get around with a combination of twisting on his good leg and hopping on it. He is not allowed to put any weight on the injured leg and I consider it nothing short of miraculous that he has not fallen down. Even his physical therapist was scared watching Michael on the move! PT has been going well – and Michael proudly wears the badge of honor of being the only teenage boy client of this therapist who did not cry his way through the first several sessions of therapy. He white knuckled it, but grinned through it. He is looking forward to April 10th when he should be able to put 25% weight on it. Honestly not sure what that does for him – but heck, he is excited so I am excited!
Michael at his first physical therapy appointment.

Michael at his first physical therapy appointment.

So just to round up this update with all our other weekly metrics – John and I got a mild version of what Peter had but it was rough. Alexandra, Michael and Gretchen were also sick – G is suffering with allergies now too. As only three year olds can do, we have a vocabulary full of Gretchen-isms which include “My nose! My nose!! My nose is racing again!!”……see, her nose doesn’t run, it races! And when her nose is stuffy she doesn’t like the poo-taste on her poo-brush. Try to keep a straight face every morning and night when she says poo-taste instead of toothpaste!  John and Alexandra have golf practice four times a week leading into the upcoming tournaments through the spring. Jack’s wrestling season has started – two practices and two matches a week. Tommy excitedly had a cub scout pack meeting this week where he received rank. He also proudly carried the flag. His goal is to become Eagle Scout one day – so glad he found something that is all him! John did have surgery earlier this week. It was for an injury he had seen last year, but very recently had become extremely painful. The surgery was outpatient, and he is on the mend too.
Tommy as Cub Scout color guard.....and so excited!

Tommy as Cub Scout color guard…..and so excited!

We have had our ups and downs – but wrapping up a calmer weekend. I am headed to California in the morning – weather willing – and looking forward to Easter with the family next weekend. We have much to be thankful for!!
Wishing you and yours good health, and a happy Easter season!

Finally coming out of a blogging dry spell!

Where to even start?! I have been “gone” for so long that I don’t know if to recap or start fresh or somewhere in between. What was normally so therapeutic for me – keeping up the blog – just felt suffocating in the last several months. In all honesty, my brain has been mush…..on second thought, less mush and more like a giant tossed salad. So many shreds of thoughts, but seemingly incapable of getting a complete idea put together.

My last entry was in October, when we found out my mother had been diagnosed with cancer. Shortly after that I went to Peru where I spent about a ten days with my family. My mother, father, brother, and my mother’s two sisters. When I arrived my mother was in the hospital and not doing well. It was a mixture of sedation, feeling overwhelmed, and a burning desire to just get back home. After a few days, she was able to come home, and receive palliative care there. With 24/7 support, my mom rapidly adjusted to being back home. Despite the oxygen, nasal feeding tube and endless steps to treatment – she was just so relieved to be in her comfort zone. We took turns riding with her to the daily radiation therapy sessions. On the surface we were a family enjoying time together – good laughs, a few games and a movie here and there. Underneath the currents of our emotions ran strong and deep. It was not how we had expected to be together again.



Less than two months from diagnosis, my mom took her final breathes at home with my father by her side. Their relationship strengthened further by this challenge – we know she left us just as she would have liked. Within a day I was in Lima, and Roger the following day. It was a lot of running around taking care of things – minutes and hours filled by a busy state that suppressed the rush of emotions. My mother’s funeral was beautiful! The church was packed with folks standing on the sides and in the back. At our request people came dressed in bright colors. My mother wanted to be celebrated, not mourned, and that is what she had…..I just pray that as she went up to heaven she was able to see how the colors filling the pews resembled the English garden we wanted her to experience. There was so much love, so much support, so much celebrating of who she was at each stage of her life.

My father came back to the US with me. And in true Colorado form, we had truly frigid temperatures for his stay. Did I mention he HATES the cold? I know where I get it from! And I doubt he honestly believes me when I tell him we have been in the 50’s, 60’s and even a few 70’s since he left! Despite the cold, the warmth of being with family helped us all!

I will be honest – I have not yet really fully grieved. I know I need to, but it is a little bit out and a lot bottled up in the same place as everything else that has accumulated over the years. Peter’s health challenges from the moment he was born, the diagnosis of leukemia, the nine week hospital stay with many on a ventilator, all the times we have been told “he may not make it through”. Every day of the six plus months we have spent in the hospital over the last five years. Tack on my own self induced stress and that which normally comes in marriage and life…..my “bottle” is very full! At times I yearn for that ability to just sit down and let it all come out…..but you know how that goes in my home? Probably not much different than any other home full of kids! I think everyone is covered off on…..I sneak off to the bathroom. Quietly close the door hoping no one will notice I snuck off. Yet, I must have gone right out of the radar zone, because all hell breaks lose! A poke, a hit, a paused video game, empty glass of milk, lost book, homework drama, chore avoidance, wrong words ushered followed by “MAMA!”. The mounting chaos can be heard climbing the stairs behind me. Peter’s “Mama, mama, mama” and pounding on the bathroom door. Gretchen’s “MAAAAAMAAAAAA!!” and a hormonal unleash only a three year old girl girl can let out that rivals a teenage girl! Keep in mind there are four more coming up the stairs behind her …..so you get the picture! I know one day I will miss the chaos – but right now I miss silence, just for a day, a silence where maybe those shreds of thoughts can come together and form an idea!

So what else has happened at the Krause house? Well…..Alexandra turned 18 and has been accepted to her top three college choices. We head out next week for tours of two of them, and an interview for a full scholarship to one. Fingers crossed!! Michael turned 15, and finally got his birthday party last night. Can you still call it that when they are sweaty stinky teenage boys cheering on XBox games as if it were an olympic sport? One laser tag, bowling, pizza, cake, video games, movie and sleep over later…..I am back down to 6 kids, and not the mother of 15! Jack is anxiously waiting the start of wrestling and football, but in the mean time fills about every spare minute with a book. As a result he has tested at a 9th grade plus reading level at the tender age of 9 years. So proud! Tommy has determined he loves sushi based on samples at the grocery store. Waking me up in the middle of the night to ask if I will take him to see if they have more samples has crossed the line into serious obsessive behavior! He has proudly (and finally) began Cub Scouts. He has wanted this for years! Gretchen turned 3 on December 31st. Way late for a girl, but she has finally started potty training. She is further motivated by the fact that she is on the waiting list for gymnastics and needs to be potty trained. My kids tend to skip the terrible two’s and make up for it in the terrifically terrible threes – and she is exercising that will many days! Good thing she is so stinking cute!

Last but not least of course is Peter. He continues to love school!! He was hospitalized in December, and released just a couple of days before my mom passed. Thank you God! I could not have handled both at the same time!! The chemo is taking a toll on him – but we hold on to hope that, God willing, his final dosage will be December 27th of this year. Just the fact that it is this year is so exciting!! His speech is still delayed, but when you listen closely you can hear him working so hard at words His favorite phrase is “what’s that?” ….a sense of inquiry leads to a mind full of wonder! His school testing confirmed he is behind his typical (and healthy!) peers – but he scored “typical” for school community and coping skills. Celebrating! There alone he has beat a couple of his siblings who seem challenged in the school citizenship area. We plan on having him do full day Kindergarten next year, and optimistic that another year of the basics and being post chemo will help make up for lost time and better prepare him for 1st grade. Preparing for the summer, Peter starts swim lessons at the end of this month. He loves the pool! No doubt many entries still to come on all his accomplishments.

I thank all who have continued to keep us in thoughts and prayers despite being “off the world wide web grid”. Praying 2013 will be peaceful and full of good health to all…….and the loss of weight I gained as I ate my way through the stress of 2012 would be much appreciated too!



I had expected that tonight I would be posting an update on our trip to Disney, but honestly I am exhausted from feeling like my world has been once again turned upside down and shaken really hard. Shortly after we got home last night, my dad called to update me on my mother. As many of you know, she has not been well for many months now. She has seen doctor after doctor, and told she had anything from stress, to heart burn, to the flu. We hoped having her come to Colorado for our family reunion would be a change in scenery and climate to help – it didn’t. She had persistent coughing which led to extreme exhaustion and loss of voice.

After returning home she has again seen doctor after doctor, and a slew of tests. Still no real answers. This week she awoke with her face and neck swollen to where she was unrecognizable. Unable to open her mouth much, she was not able to even hold down pureed food. My father (Alan) took her to a different hospital where the “chiefs” got involved. On Wednesday – two years and three days after Peter was diagnosed with leukemia – my mother was diagnosed with a malignant tumor in her lung (aka – lung cancer). On her request, my dad did not tell us until we got home from Florida.

The news is not even 24 hours old. We know very little right now – but what I do know is that she is not having surgery to remove the tumor. She began radiation, and tonight had a port inserted so she can start chemotherapy. With a little research, I know there are different types of lung cancer, and am anxiously awaiting more information about the type and stage. We know she has had symptoms for about 6 months which have led to paralysis of a vocal cord amongst other challenges. She is in good care at the American Clinic in Lima (Peru). My aunt Lesley – a nurse practitioner – is on her way to Lima this week to assist my father in digesting the information as it becomes available and caring for my mother. My father has asked that my brother Roger (who lives in Spain) and I remain on standby until additional information becomes available over the next week or so. I know we both feel so helpless right now.

But this is where you all come in! Over the last five and a half years my mother has read every CarePage post, every comment and word of encouragement many times over. She has rallied her troops, and been amazed and how many folks reading this page rallied their own troops around praying and positive thoughts for Peter – she is convinced that no corner on this earth has been left out, and that it is through that power that Peter has overcome what appeared to be unsurmountable challenges. My mother is a woman of amazing courage, stoic strength, and deep love for family and friends. She is a lioness of a mother, and a pillar of strength to all who have needed her support. Right now she needs ours. I am asking you to please include my mother – Christine Mortimer – in your thoughts and prayers, and for all the Mortimer family, as we prepare to support her on this very difficult battle. I ask that you please share this with your friends, family, loved ones, and support groups. We don’t know what lies ahead, but we know how comforted she will be knowing that she is being lifted up in thought and prayers.

In advance I thank you on behalf of myself and all my family as we pull together our shattered hearts, and learn to be the pillar of strength she needs in ways only she has been able to teach us.

My parents – Alan & Christine Mortimer


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.

Worry-Mommy Update

Thank you to all for your words – words of comfort, words of friendship, words of wisdom, and words of advice. I appreciate them all. This will be a short update as I feel compelled to answer but at the same time, work calls tomorrow, and I stayed up later than planned building lego towers with Peter. Amazing how some one-on-one time with out distractions can remind you just how in love you are with someone!

…and when I could stretch no more, I knocked it down and started again….

My worry, as does that of many of the moms who reached out to me, comes from a place of caring – a fine line separates them! Because we care, we worry we are not doing enough. Six years ago someone told me I was a bad mother for working. Not a day goes by that I don’t think of those words and they haunt me. I know some of you have talked me through this too many times – but the hurt is still there. So when I love my family with the intensity that I do, and I worry that I am not giving them enough of me, words such as those sting extra hard. At the end of the day I am like everyone else – I want to reach the end of my life and feel like I was a good person who did the right things. What is a good person? Easier said than truly defined as that is where I often hiccup myself. I trust that God will fill me with the grace that I need if I open myself up to him and as he has during many of the difficult parts of our journey with Peter, but I struggle with the no worrying. Worry comes from caring, and caring is what I am called to do. I am thankful every time Peter pulls through a health crisis, but yes, I worry every time he gets sick again. We have spent months in the hospital since he was born – it is the caring and the worry that motivate me into advocating and celebrating. Today I worry about things never imagined, and yesterdays I worried about things that are nothing to me today. I hope to continue to grow, learn, and be more purposeful in every way.
In the event it has not been clear since I started blogging –  I love my son beyond belief!!  I love him with an intensity I did not know possible. I love all my children, but Peter is there is a difference – a vulnerability and openness that the world can’t rob him of as he grows, but which also makes him an easy target. Browsing the internet alone shares disturbing images of disrespect towards individuals with Down syndrome in the name of humor. So yes, I know my son is disabled and looks different, and that alone brings attention to him. I also know that for every person who judges negatively there are others who embrace him with a smile. I am not embarrassed by Peter, nor do I try to hide and pretend he is not disabled. I am proud of Peter and wish everyone was as blessed as I feel with him in my life.  I would have talked to the girl had the time presented itself – I was looking for the right words. Peter had different plans and for anyone with a “runner” in the family, you know when he says he is leaving you catch up or you find him in the road. Which Peter has already done this week! He said he wanted a walk, I said I needed to go potty first, a few minutes later he had already disabled the 3 locks on the back door and had made it to the street behind us. So when Peter says we are done, I follow!
I have talked to many kids in the right setting about Peter, answered questions about his eyes, his floppy ear, why he walks funny, and so on. I have had to explain why he doesn’t learn as fast when kids playing with him get frustrated. I actually prefer to be asked than to be avoided. I have presented on Down syndrome and people first language at two of my kids’ schools. I have answered questions from adults and grinned through some hurtful comments to find a learning opportunity. Comments like “I guess you were too old to have kids and got stuck with a retard”. Yes, they happen. And yes, I have done my best to educate – even when the conversation starts from a place of judgement. This time, time did not allow for that. And I hope if nothing else she knows that in a parents’ eyes their children are beautiful and will remember that at a meaningful time for her.
There was concern I had judged the girl. I’d like to apologize because at some level I did. For the record though, I don’t believe any pretty girl is a Queen Bee – I like to think I have two beautiful girls and know many others that are gorgeous inside and out who aren’t Queen Bees or wanna-be’s. I don’t know this girl but I have been around girls long enough to discern some behaviors, tones and attitudes – and have comforted my beautiful daughter from words of judgement and not curiosity.  I believe our children can learn, but adults have the responsibility to model the right behavior. And this is a do as I say, and not as I do moment! When my daughter exclaims that speeding is a rush, or my son yells out from the back of the car “HELLO! GREEN MEANS GO!!” I know I have some work to do on the behavior I model. We all do! None of us are perfect.
Off to give Peter another breathing treatment and hope for some sleep tonight – he gave me one good night of solid sleep and has since been up every night uncomfortable. I think he rolls over onto his accessed port and it pokes him. He is naturally a tummy sleeper with the rear up in the air – so trying to get him to sleep on his side is not easy!
Good night friends!