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