Thursday, October 30, 2014

31 for 21: #30

As Down syndrome awareness month comes to a close (yes I know there's tomorrow.....but that's for Halloween!), I look back all of the posts from this month and I find myself thinking that Owen is a lot like other kids his age, but he's also uniquely himself.  He is who he is and he doesn't apologize for it--he likes what he likes.  I wish I could be that honest with myself!

I hope others see what I see:  a boy that likes to be outside playing, that likes adventures, that is learning both at home and at school, that likes his friends and his school, that loves his people and his places.

He is living his life.  That is what I want for him always--to live a life that he chooses and that he enjoys.  I think that is what any parent of any child--disability or not--wants for their child(ren).

Do we have challenges and will there be challenges in the future?  Of course, but so do many other families.  I think the important thing is that if people simply have some compassion for others, we can better overcome those challenges.  Understanding a little bit about Down syndrome and how it can complicate what others may perceive as simple is an important part of awareness.  It's that kind of awareness that pushes employers, teachers, and society to work a little harder to incorporate individuals with intellectual and physical disabilities into the world around them.

I do have worries about Owen's future with schooling, jobs, and living on his own.  But I'm savoring this time right now and I'm hoping that all the things we do now and all the things we help him learn will lead him to a very bright, independent, and pleasant future.

This boy has never met a slide he didn't like!

Tuesday, October 28, 2014

31 for 21: #28

There is nothing better on a fall day than playing outside, especially when you know that soon it will be nearly impossible to be outside for several months.  One of the best things about being outside is watching Owen learn to do things for himself......on this particular day he conquered his rock wall (no shot unfortunately!) and figured out how to get himself into the swing and push off.  His joy is evident in the smile on his face.




Monday, October 27, 2014

31 for 21: #27



There isn't a fountain anywhere that Owen doesn't like.  I do think he was hoping he could get in there and take a shower, though!

Sunday, October 26, 2014

31 for 21: #26

Once you're in the Down syndrome community, you meet a lot of people and make some really great friends.  We recently got together with my friend Jamie and her daughter Ella who is 6 and also in Kindergarten.  They live a couple of hours south of the Twin Cities, so it's hard to get together very often.  But the zoo is always more fun with friends!




Saturday, October 25, 2014

31 for 21: #25--Heart Update

Yesterday we went in for Owen's cardiology appointment.  It's been 2 years since our last visit and while it's always nice to see Dr. Rios because he's a nice guy, I never look forward to this appointment.  There's always this fear that he's going to say that something is wrong with Owen's heart and a surgery is needed to correct it.

I was impressed with Owen's direction following from the start:  the nurse needed to weigh him and check his height.  He had his shoes off before we even asked and he stood still for both measurements.  We were easily able to get his pulse ox (yay for a 100 reading!) and his blood pressure (normal range) as Owen just sat and listened to the nurse.  

We did need an ECHO done because it's been 2 years.  I brought the iPad and a DVD with me to make sure Owen had something to watch while the tech did his work.  The tech was an easy-going guy, who let Owen look at his machine before he needed to lay down.  Then Owen just climbed on the bed and laid down........no fuss, no muss!  I held up his iPad and we watched an episode of "Elmo's World" while the tech got all the images he needed.  Owen didn't even flinch when the cold jelly had to be put on his chest area.  

When Dr. Rios came in and had a big smile on his face, I knew everything looked good.  He listened to Owen's heart some and explained what he saw on the Echo--good, healthy, growing heart; minor leakage which is something he will always have.  No restrictions, no medications, no visit for 2 more years!  

Earlier in September, I actually forgot all about Owen's heart day on Sept. 3.  I know that might sound crazy that I forgot, but I truly did.  It was the second day of school and I had so many other thoughts invading the space in my head that it escaped me.  And in a way I'm glad it did.  I'm glad that instead of the worry, anxiety and wistfulness I normally feel on that day, I got to feel some joy and happiness about my little boy heading off to a full day of school.  Because that means he has been fixed--his heart is working correctly and he is able to enjoy his life without that worry clouding it over.

Dr. Rios said something interesting to me:  "Whenever I see Owen's name, I think of a little baby, so to see him now is a bit of a shock."  Dr. Rios saw me in my darkest moments when my little baby was being carted off for a major surgery, one in which I was so afraid that he would never be returned to me.  It makes me so glad for Dr. Rios to see him now.......a healthy 5 year old that is more than willing to offer him a hug and a high five.  These appointments will never be easy for me; I will always be anxious and worried, but I am forever grateful that Owen's heart is in very, very good hands.

Chillin' with my iPad
No worries, Mom, I've got this!



Friday, October 24, 2014

31 for 21: #24

"Ghosts" from Halloweens past................

2009--my little pumpkin
2010--a gentle lion
2011--a silly frog

2012--a funny monkey

2013--a fireman at your service
So what will this year bring?  You'll just have to wait until next week, but if you know anything about Owen, I'm sure you can hazard a guess!  :)

Thursday, October 23, 2014

31 for 21: #23



Ah, yes, 2 men, some tools, and a project..........what better bonding time?!  I will say that the storage unit is well put together and Owen really did like helping hammer in several nails.  He totally got into it, which made me terrified that he'd smash his thumb or destroy the new unit with his ferocious hammering skills!

Wednesday, October 22, 2014

31 for 21: #22


I took this photo of Owen on the light rail to Minneapolis over the weekend.  I can't help but look at it and wonder what he is thinking.  If he could tell me, what would he say?  That he was intrigued with the cars nearby?  Or that he wondered where we were headed?  Or how does the light rail work?

I fear that I'll never truly know what he's thinking because he doesn't have the words to tell me so.  When I hear people say that they wish their kids would shut up or that it would be great if kids came with off switch, I just want to say......be careful what you wish for.  I know what it's like to have a child with a permanent off switch.  And it's hard and sometimes heart-breaking.

If one day he woke up and started talking and never stopped, I wouldn't care.  And that is a very careful wish on my part.