….from the blur of ordinary comes extraordinary….

Where did summer go? This was my first summer off since I was in school. Yeah, that was a long time ago! I know I felt so relaxed, I enjoyed the weather, I actually have tan lines (the best ones on my feet – but that counts!). I had big ideas – most seem to have fallen to the “One-Day-Some-Day” list. It really did feel like it slipped right by in a blur.

In that blur, some things stand out. Alexandra got her own place, and moved out, to get ready to tackle college again. Michael got his first job as a host, and looks so spiffy in all black with a fun tie. Jack wound down the intensity and just chilled out….he found a new appreciation for Latin, and went into this school year a different young man. Tommy has now read every Calvin and Hobbes book twelve times. Peter went to summer day camp – on his own – and loved it! Figuring out that certain things only happen on a given day of the week has been the impetus he needed to work on “days”. Going to the gym on Friday is anticipated with much joy, and has taught him that he can’t move the days of the week around no matter how hard he tries. Gretchen became a fish. While the other kiddos in her swim class refused to put their heads under water, G found pleasure in making it to the bottom of the pool and then slowly floating up. Yes, she looks like a corpse. And better yet, Peter does the same thing. I don’t know what people think when I am dazing at two face-down floating bodies in the little kids pool.

Life is more fun with goggles?!

Life is more fun with goggles?!

Yep.....into 1ft 6in of water.....stressed me out every time but the "don't jump" wasn't getting through.....

Yep…..into 1ft 6in of water…..stressed me out every time but the “don’t jump” wasn’t getting through…..

So handsome!

So handsome!

Many of the extraordinary activities never came to fruition, but the sum of the ordinary events made this summer extraordinary. And I experienced the season I’ve heard of so often, but didn’t get to witness in my basement office with no windows. Yes, Catherine, there is a summer!

Relaxing in Pagosa Springs.

Relaxing in Pagosa Springs.

Enjoying shakes and malts in Pagosa Springs CO

Enjoying shakes and malts in Pagosa Springs CO

....getting in more s'mores during the last days of summer....

….getting in more s’mores during the last days of summer….

The school year is bringing on a new normal for us. Alexandra is started back up in college, with a long term plan to become a nurse. She is thinking seriously about pediatric oncology, and I think she would be an amazing gift to the kids and families that must go down that path. We know from experience that nurses are THE BOMB – they make the unbearable bearable, and are capable of so much compassion. They inspire me!

....not only did she get her own place, but she went dark with the do too!

….not only did she get her own place, but she went dark with the do too!

Michael is now a Senior in HS. He has received one college offer, and we are expecting two more in the upcoming weeks. No top choice for schools yet, so much more to come there. Jack is a 7th grader now, and gets driven to school by his big brother. May not be a big deal to him, but it is a monumental event in my book. Hmmm….maybe Michael needs to stay in town so he can continue his duty to family and school?!

Peter started 2nd grade. His enthusiasm for school is still strong, and he can run down the driveway shouting “da bus, da bus” in a way that invokes confusing flash backs to “Fantasy Island”. Bless you, young folks, that have no clue what I am referencing. My traditionally angelic child, has let his little devil come out at school a few times. That sweet spot under the play set that no normal sized adult can reach, is a great place to sit and laugh at the world. Lucky for Peter, he has some peers in his 2nd grade class that have his back, and coaxed him out before there was big trouble. He is still really struggling with handwriting, and he is being given opportunity to practice some keyboarding, as we may need to move in that direction sooner rather than later. Peter has however mastered lowering people’s expectations of him. Sigh. He can count well past 10 when necessary, but has figured out that if he counts 1-2-3-5, you will stop and reinforce 1 through 5 over and over again to ensure he nails down that 4. See what he just did? Low cognitive skills…..I think NOT!

Life is better with the cream on top!

Life is better with the cream on top!

The biggest change has been for Tommy and Gretchen, that are homeschooling this year. Monday – Thursday they are with me at home (or where ever we decide to take the class that day). On Fridays they participate in a STEM program offered by our school district. We are still finding our rhythm, but so far I’m loving it! Tommy struggled with losing the opportunity to be with his friends on a daily basis, but has found the upsides of homeschooling. He must whisper them to Jack. First Jack said, “You need to stop doing so many fun things with Tommy, it is hard for those of us that have to go to school.” Followed by, “I’ve been thinking, I believe it would be better for me if you homeschooled me too.” Tommy’s Math was beyond the curriculum we have, so we have moved him up a grade level there. However, his punctuation needs working and I am so not the right person – I enjoy using punctuation for my own selfish purpose void of rules! Gretchen is working on reading and telling time, but her favorite event is the weekly playdate she has had with our neighbor’s grandson. She loves the crafts! Clearly I need to spend more time on Pinterest……. it intimidates the heck out of me!

Learning at home....and loving it!

Learning at home….and loving it!

Teaching PSL time!

Teaching PSL time!

Fall is in the air. My 5:30am emergency run to the grocery store last week actually felt more like winter! I have a love-hate relationship with this time of the year. I love the crisp mornings and colorful leaves. I love snuggling up in the evening and feeling the end of each day. However, every year for as many years back that I can remember, something big and hard, has happened during this time of the year. Peter’s multiple diagnosis/illnesses and his time on the ventilator, my mom’s death, my father-in-laws death, and so much more. I am at the time of the year when I brace myself for the other shoe to drop. And I pray there are no more shoes to drop!

Someone asked me recently about how I got through all that we have with Peter. I think I disappointed. The truth is, there is nothing amazing that I’ve got figured out and my prayer life leaves a lot to be desired. I am far from the poster child of any way to handle challenges. But what I did share is that from the moment of Peter’s pre-natal diagnosis, I have held on to the belief that we all have a God given purpose, a higher purpose. That purpose may be met in a day, a week, a year, or a century – that is not up to me to understand or decide. Believing in that purpose, that greater good, is what makes the journey possible. I have no magical answer, but what I did add was that every day I work to make sure my faith is bigger than my fear. Just that simple, I keep my faith bigger than my fear. I think “believe the purpose is bigger than the shoe” would have made me sound crazier than I already sound!

So here we are, on the cusp of a new season. Time to look back and reflect. Our ordinary lives have given us many extraordinary memories. The truth is that we have much to be thankful for as a family. We have SO much to be thankful for as a family! It is so easy to get wrapped up in the day to day, to believe we do not have enough. Or, more likely, to believe that we are not enough. The endless spiral that so easily distracts us from our reality. Regardless of the challenges that lay before us, the truth is that we have so much more than we ever need. Knowing that, may we all reflect on the dignity of every human life. May we find ways to protect and support those robbed of their human dignity in any and all stages of life. May we put aside color, religion, gender, political affiliation, and all other ways of sub-segmenting humanity, and truly respect all lives. All lives matter.

Happy Pumpkin Spice Latte season to you all!



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