Why I Write...

Well, I checked my stats tonight and I have written, three... gulp, 3 posts so far in 2012. That's not so good. Have a lost my mojo?? Not so much... just got pulled under with this thing called life. I've wanted to come back... wanted to write... have actually had lots on my heart to write about, particularly with Reid transitioning to a general ed kindergarten this fall and all that brought us to that crossroad.... but my blog laid silent most of the year... and needed to I suppose for a bit. I don't like fast and furious in my life... I like slow and steady much better and in order to try and pull in the reigns a bit when life felt like it was speeding up much too fast I decided to set aside a few things... and my cherished blog was one that needed to take a back seat. But... my fingers have been itching to type and my heart and head have been housing stories I've wanted to share... 

And yes...I know this is totally vain but I really truly think that the fact that my blog was still stuck in Christmas mode the whole year through bothered me to the point of well, silence. But weeks have a funny way of turning into months...and well, we are now 7 weeks away from Christmas... and the fact that in the last 24 hours I have purchased 3 Christmas presents as well as the wreath below... well, I deem the background appropriate enough to say, "You're close enough to Christmas sistah... hold your head up high and type away!".

So type away I will... and what the end result of tonight's typing will be I am not at this moment sure of, except that I know that I have been wanting to write about a question I was asked recently....
A few weeks ago I was asked by a new friend, who also has a sweet son with Down syndrome... "Why do you write?" as in my blog.
I type my answer here maybe even more as a reflection for myself than it is meant to be informative in this space... but here is my answer;
My dad lives out of state, so when Reid was born I called him from my hospital bed to tell him the news. I remember clutching to that phone needing to hear his voice on the other end, I needed to hear my own parent tell me it was going to be okay, which he did but just as speedily as those words came off his lips so were the words, "Are you ready to write kiddo?". I cried and told him that this, Down syndrome, was not what I had ever envisioned myself writing about. He knows my secret passion to write because we both share the bug~ his to write a novel and mine children's books. But, he encouraged me to write, about this, Down syndrome. I filed it in my head not knowing what I would ever do with that comment, but filed it knowing it was a special exchange between the two of us.
About 6 months later I stumbled upon a site that fed blogs through it... all of these blogs were written by family members who had a child with Down syndrome. What??.. I could hardly believe it. Night after night once the boys were in bed I would scour the site and all the blogs and read post after post of families just. doing. life. And... they were happy. Life did not end for them. The theme I began to see in all of them was that Down syndrome was a non issue, it was a blessing to them, it was what molded them into better versions of themselves... and it was fuel to my soul. Truly... the idea that I could peer into someone's life and see how they were doing life along this new journey I was on was so helpful to me. I gleaned resources on top of encouragement, and began to put into focus my philosophy of raising a child with special needs. I could feel myself taking a little of this and a little of that from each site and each family.... without them even knowing it because they were right there- on the internet- for me to learn from. I. am. so. grateful. for those blogs in the early years. And then as crazy as it sounds... many of those strangers I gleaned from in the beginning... have become friends along this road. People I feel invested in, people I never would have met had it not been for this extra little chromosome that our children share. I need this connection with others who also have a child with Down syndrome as much as I need the connection with my childhood friends, and other close friends I've made in my life. 
That... that's why I write. To connect. And... if there is a family that stumbles upon my blog that is new on this journey and can see the same thing I saw in others.... that we are happy, that we love our boys to the moon and back, that Down syndrome does not define our youngest son- that he is more like his brother and his friends than not- that we are not sad anymore that he has Down syndrome- that we feel so incredibly blessed... then I say thank you to those who came before me and showed me the beauty of writing and sharing so that others might get their legs about them like I did. 
"Yeah Dad, I'm ready to write...."
...and as for what my little men have been up to while my blog has laid silent, here is a snippet... 

Their first puppy

Best Buddies Friendship Walk 

Preschool Graduation

All Star baseball

Summer fun

First Day of School~ Kindergarten and 5th Grade

Robert H. Goddard and his superhero sidekick

...and just today~ Mummified at a birthday party

 That wreath up top I bought today?... bought from a friend on the other side of the US who I met via her blog when she was still pregnant with her sweet Bennett, who also sports an extra chromosome. Thanks to her writing, I got to celebrate his birth and pray for him when he was going into heart surgery months later. I love this little thing called writing connecting.

A Day with Blogging Friends... Ella and Deedah's Dad

So today was fun! We got to visit a bit with one of our blogging friends Denise and her sweet daughter Ella over at CHOC. Ella has been battling Leukemia and is in her 5th round of treatment...one more and she gets to go home, for good....what a fabulous day that will be!! All the way there Reid chirped Ella's name and he held firmly onto a little turkey art project he made for her...but when it came time to give it to her, well he kind of became an indian giver. (ooh, that felt kind of weird writing that...yikes I don't think that was politically correct...but let's just say he was none too happy seeing her walk down the hall with it). Pictures below of the art hand off... or should I say stand off! ;)

Denise...Ella is just so sweet and just so precious, we enjoyed our time with you!

"Hey...that's my tuuuurkey!"

But then...the fun continued. When I got back, sitting in my inbox was an email from Phil, "Deedah's" dad from the documentary I wrote about here stating that he was in town and would love to give the boys their own copy of Deedah... well, absolutely we were going to make that happen. A hop and a skip and a few left turns and we were there to meet another blogging friend. I love it...I love life's little surprises. So, this evening our own copy of Deedah was playing in the DVD player, what an absolute treat! I am placing the trailer in this post again in case you did not see it before. This is such a great tool to open the discussion with elementary school children about bullying... and these two siblings being the catalyst for that discussion is a perfect match. They are both adorable and articulate in their own rights! I could tell my Luke really enjoyed it as well...he and Charlotte who is nicknamed Deedah are the same age and are both the older siblings of brothers with Down syndrome and share many of the same concerns. Although Charlotte was very sweet in the way she discussed her concerns where as Luke got up off the couch and demonstrated how he would ...quote..."bash their heads in if anyone bullied Reid" ...so perhaps they are similar in "many ways" but not all ...oooh boys! ;) I think another reason Luke really enjoyed watching was that Charlotte was asked if she liked her nickname Deedah and she broke into a sweet smile and affirmed that she did because her brother gave it to her when he first attempted to say "sister".... Luke has the nickname Dah which was given to him from Reid when he first attempted to say "brother". So, I think it was very fun for Luke to hear there is a "girl version" of his nickname.
Okay...I just thought of one other thing and then I am hitting the hay because it is way past my bedtime. My last thought is this.... if this is used as a tool in schools to open the discussion of bullying which in big part is its purpose ....I just had visions of lots of brothers and sisters sitting at their desks as this documentary is being shown who have brothers or sisters that others might see as "different" in some way and I vision these young people almost sighing a sigh of relief that the elephant in the room has an opportunity to be talked about... that they can then share how much they care about their family member and share their experience and help them to have a voice where as they might not feel they can out on the playground. Hopefully the discussion will lend itself for change out on the playground for those children's siblings as well.... I have a huge hunch it will.
***turn off my music at the bottom of the blog before watching the trailer...

Deedah Trailer from Philip May on Vimeo.

Breakfast Date with Blogging Friends

Two years ago I started this blog as a result of being inspired by Down syndrome blogs I found on the Gifts website. Every spare moment I had I would hop back onto that site to see if anyone had posted anything new and I began to develop favorites and then quite quickly actually started to become attached to kiddos... and their moms... and their families who share this extra chromosome...two of those blogs I found at that time were Three's a Charm and Finnian's Journey......and as my fabulous fortune would have it I got to meet the moms behind these amazing blogs this morning. We met for breakfast at Downtown Disney and honestly it was like sitting with old dear friends!

The kids seemed rather fond of each other too and were so well behaved... just look at these cutie pie guys!

Joaquin is so sweet! Both he and Reid were a little frightened by the animal sounds at Rainforest Cafe...which meant they both snuggled in to their mommas which meant no squiggles and wiggles, it was perfect....maybe I should always restaurant where there are sudden rants of jungle animal sounds and flickering lights! ...worked like a charm!! ;)

Oh little Sofia....I could go on and on about this squishable, huggable, loveable, adorable little love bug! Seriously....she was so huggable. She went right to me and even though she has these darling little pudge rolls she is still just so little-little. I had to hold her out front of me, legs dangling for a minute, just to drink her in...all smiles and waves she is!! If you are not familiar with Sofia's adoption story you can read that here...

And then little Finn....Reid has decided they are going to be good buddies, he was stuck like glue to Finn and kept patting his leg and getting close to him, even hugging him, pictured below, when Finn was trying to crawl around.

As Finn was crawling around the other two boys decided that looked like fun which resulted in them all crawling!

And these next pictures make me smile...as we all know it is hard enough to get one child to smile and cooperate with the picture taking but to get 4 kiddos was, well...comical especially when we had 3 different cameras going! Jennifer and Lisa I hope you don't mind me posting these but I love these pictures below because it is such a snapshot of this precious chapter of parenting...illustrated by kids slipping off of hips, pointing to the camera so our wee one will look, hair out of place and giggles because try as we might it just wasn't going to work to get the perfect shot ;)

I love that Reid and Finn are having their own little side conversation here!

...and then there is this shot that I am going to lovingly call "Charlie's Angels" except that one of the angels decided to look at the wrong camera! I laughed out loud when I first saw this one! ;)

Jennifer and Lisa....so glad it worked out today for us to finally meet...and Hector thank you for indulging us and giving us a few hours of your vacation, so good to meet you as well!!