Vote for John Michael... NDSC poster kid contest...

The National Down Syndrome Congress (NDSC) has a campaign to emphasize individuals with Down syndrome are really "More Alike Than Different."  I couldn't agree more, especially as I watch John Michael develop into a curious toddler, full of life and a love for learning and engaging with others, just like his older siblings. 

Over the summer, the NDSC Convention just happened to be here in Sacramento.  I saw and heard first-hand amazing individuals with Ds who spoke about going to college, driving a car, getting married, swimming the length of Lake Tahoe, living independently and working in meaningful jobs.  They have shattered my outdated misperceptions, surpassed society's limited expectations of what they can accomplish, and opened my mind and heart for an exciting future for John Michael. 

Just before the Step Up for Down Syndrome walk last October, we visited the NDSC website and made our own "More Alike Than Different" poster.  Now it's time to vote for the best poster...

Click here to see John Michael's poster #66 and the gallery of other super-cute children and talented young adults with Ds who are all more like you and me than different.

Read some of the posters...

Open your mind...

Be inspired...

Entry #66

I also recognized some of John Michael's buddies from blog-land and Facebook.  Check out Mayson #4, Addie #11, Brayden #14, Lila #42, Emilia #68, Luke #73, Kayla #74 and Colin #75.  Aren't they precious?

Now, click here to cast your vote.  Don't forget... #66!

Wordless Wednesday -- Randomness

It's a rainy, windy day here in Sacramento.  The blossoms from our Bradford Pear trees in the backyard are falling, leaving a snow-like blanket over the grass and patio.  Here are some recent, random shots all taken in February from when we were having gorgeous spring-like weather. 


Just John Michael...  I love the expression on his face.

Greta showing me that she can, in fact, Hoola Hoop...
even if it is only 2 times around before it drops. 
Gotta start somewhere...

John Michael eyeing a baseball he found in our outside toy box. 
He loves to play with balls -- whether it is kicking, throwing, rolling, or swiping with a tennis racquet...

After this shot, I gave him Greta's little tennis racquet and showed him how to hit the ball.  He sorta got it and then went on to hit the beach ball with the racquet.  Much more satisfying...

My big girl, Greta Sunshine. 
She's turning 5 in April, and is Michael's biggest teacher, motivator, dance instructor, mischief partner, and playmate.  I think it's going to be a tough transition for him when she goes to Kindergarten in the fall.

Anna buried in a snow hole she and Nic dug out while sledding in the Sierras.

Nic and Doug with Bishop Jaime Soto in front of the Cathedral of the Blessed Sacrament on Scout Sunday.  Nic received his Ad Altare Dei award and Doug received the St. George award.

Me and my prego belly, while on our Valentine's weekend getaway, outside of the Sonoma Mission.  I don't kow what it's like to have a small prego belly, but yes, there's only one in there.  :-)

I just love a strong man  ;-)  Here Doug is doing his part to tidy up one of the fallen redwoods in Armstrong National State Park.  This tree is about 1400 years old.  Wow! 

When I Grow Up...

What do you want to be when you grow up?  That seems to be a common question in our house right now.

This morning, while beading a colorful necklace for her Oma, Greta announced... "When I grow up, I want to be an artist and a veterinarian farmer."  Hmmm, lots of paintings and other creations, fresh vegetables and healthy farm animals.  Sounds very down to earth.  If anyone can, she can pull it off.

I love the things kids come up with, especially when they're creating and not so much thinking.  Just letting their thoughts come out as they come to them.

Anna wants to be a teacher and an author.  She says she can teach and still write in her spare time.  I hope she also continues in art, but I'm very impressed by her writing skills.  It's these "smiley-face" tricks... a writing technique she learned for excellent creative writing.  I should take notes!

Nicolas still desires to be a Catholic priest -- something he's aspired to since he was 5.  Some days he says family life, being a husband and father would be a joy for him as well.  He's very involved in Boy Scouts, has strong leadership skills and tends to be analytical, so who knows what else he would choose to do.  He's still young... who knows what his desires will be in the next 5 or 6 years.

I often wonder what John Michael will be when he grows up.  I think about his future occasionally.  He's already such a people person...  What kinds of opportunities will he have?  Will doors open for him?  or will his facial and physical appearance make a potential employer reconsider hiring him?  I used to be afraid of the future... of 40 years down the road when I'm (gasp) 80.  I no longer worry that far in advance.  We have so many years ahead of us with school and life... it's a waste of time to worry.  I'm learning to enjoy the ride and I pray that the future for our children and adults with Down syndrome will be bright.  We need more advocacy, more awareness of how awesome these individuals are, less hate speech, like the "R" word, more compassion, less infatuation with "perfection".  I've never known any of my kids to be completely "perfect" and yet, they're all perfect. 

When I grow up, I want to be more like John Michael.  Less concerned about what people think, more able to be present in the world around me and enjoy the small things, less judgmental, more compassionate, less worried about things I cannot control, and have a more child-like faith.

When was your first experience... meeting someone w/ Ds?

Thanks to Kimberly over at Chromosomally Enhanced for giving me the idea to post about the first time I ever met someone w/ Ds... (below about 5 paragraphs)

When John Michael was born, and for several weeks thereafter, I was very sad and frightened of this new world we had just entered.  The medical books that were meant to be "helpful" were causing more anxiety than comfort.  At night, I imagined that any day the doctor would call me to say John Michael had this or that medical condition requiring XYZ treatment or surgery.  I struggled with this diagnosis and the misperceptions I'd had as a child hearing the word Down syndrome, or (gasp) Mongoloid.  Was my child a Mongoloid? 

I soon set aside the heavy 4" binder from our local Down Syndrome Information Alliance and began embracing uplifting anthologies, like Gifts, edited by Kathryn Lynard Soper, and Whispers of Hope, a book of local Sacramento families who loved their children deeply and their family photos that showed very cute children with Ds.  I also thoroughly drank in every word of Road Map to Holland by Jennifer Graf Groneberg, and sobbed deeply through her descriptions of the NICU.  I finally felt a connection to other moms who had gone through the same or similar feelings I was having.

I found Jennifer Graf Groneberg's Pinwheels blog and began clicking on other blogs.  I couldn't stop reading and staring at those beautiful faces.  I was amazed at how many other families were blogging about their experiences and the majority of what I read was the joy that these families were experiencing.  I began following some of the blogs and soon after, found my own blogging voice.  At first, I was a bit intimidated.  I had no idea how to start a blog, or what to say, and worse yet, I couldn't ever keep a written journal for more than a week or two, so who would I write for and how long would it last? 

Fast forward 19 months.  I love blogging... I'm amazed at how many people tell me they read this or that post (BUT DON'T COMMENT!), or others that ask if they can share my blog with a new mom they know.  I never expected my words to comfort or console or encourage anyone, but I'm humbled to know that somehow I'm making a small difference in the world by educating and advocating for these little gifts from God.

This brings me to why I started this post.  Do you remember the first person you ever encountered or touched with Down syndrome, besides your own child?  John Michael was a baby and I'd already come to view him as a true gift from God.  Doug and I were at a dinner for Immaculate Heart Radio and a mom introduced herself to me, having recognized John Michael as having Ds.  That was the first shocker for me.   A few minutes later, she came back with her son who was about 10 years old.  I wish I could remember his name.  He had a modern, touseled blond hairstyle, was very trim, hip-looking and polite.  He held out his hand without any prompting on my part and we shook hands.  His words... "Pleased to meet you."  His eyes sparkled, his face lit up, and his crooked-toothed smile spread from ear to ear.  I was mesmerized by this boy.

That was my first experience meeting someone with Ds and it was fantastic.  He gave me hope.  Later on, the mom came back to us (I think she really wanted to hold JM), and told us a funny story about her son.  She said he likes to splash in the toilet and one time, pretended he was the family dog and drank from the toilet.  Internally, I was horrified.  I was still on cloud nine and she quickly burst my bubble as I could only imagine my own son doing that at some point in time. 

Once again, fast forward to just last week.  John Michael is learning to open the lid to the toilet and Greta has taught him how to pretend to drink from the dog's water bowl.  I just hope and pray he doesn't put those two together and follow in that boy's footsteps.  And if I end up blogging about it one day, I hope a new mom or dad out there don't read it and think, "Oh, horror of horrors... my son will never do that."  I always say... never say never.  It might come back to bite you.

So, what was your first experience?

Pondering... so much to think about...

How can this be?  I haven't felt much like blogging lately.  I guess I feel overwhelmed that there's so much to say and so little time in my day to get it all down.  It's kinda like a pending essay that needs to get done and you have serious writer's block and can't even manage to get your pen to the paper (or fingers on the keyboard.)  I've also been awarded 3 blog awards in the past month or so, but each asks for long lists of information, which takes time and thought.  My thoughts are all over the place right now.

When I post something new, I'm also "picture-driven".  I will see a photo of my kids, or just something John Michael is doing, and that will inspire my writing.  But I haven't taken any photos in over a week!  Something's not quite right.

Here are some things on my mind lately, in no particular order:

• A couple of my blogging friends, Jennifer (she's local!) and Lisa are adopting beautiful children from eastern Europe.  I honestly believe that if I weren't expecting my 5th child right now, we would be seriously considering this option for our family.  Doug has often asked if I would be open to adopting a child, and until Reece's Rainbow and other wonderful families showed us the way, I would always say, "no".  John Michael has done more for our family in his 2 years, than I ever could have imagined!  Sofia and Alina are sooo fortunate to be finding their forever families, and both are families I've followed for a while and I'm overjoyed for them.

• On 3/3/10, I'm going to speaking to the student body at my older kids' school about the R word and Down syndrome.  I'm a little nervous, but have much of it planned in my head.  The first talk will be for TK through 2nd grade, and shorter in length.  My Friend Isabelle is one of my favorite stories and it is narrated in video style, which I want to show them.  I will also talk about John Michael and use some tips from Hi, I'm Ben.  I Have a Secret.  John C. McGinley also does a couple great longer 4 to 5 minute video clips with the amazing hip hop dance group, The Strikers, to talk about the R word (it's on http://www.r-word.org/ under resources).  I plan to show those as well.  For the 3rd to 8th grade group, I will show the middle school version of McGinley's clip, talk about Ds via PowerPoint, and end with "Difference is an Artist's Game" on YouTube.  It's an amazing video essay written and narrated by an 8th grade girl about her little brother who has Ds and she compares him to a Picasso painting.  At the end, I will have the kids sign a banner pledging to "SPREAD THE WORD TO END THE WORD" and encourage them to do it online at home as well.
• I also think about the dynamics of having another baby.  I sit here typing and I can feel the little guy kicking me... gently... or nudging me to get off the computer.  Not sure.  Will he have curly blond hair like Nic, straight blond hair like John Michael, red hair like Greta, a sensitive nature like Anna?  Will he be a Lego fanatic like Nic?  What will he be like, what will his unique, unrepeatable, irreplaceable qualities be?  How will this new little soul impact our family?  Will I remain sane (ha ha) with the additional physical demands on me?  What will we name him?  We are at a loss for boy names that fit our family.  So much to think about... 
• I'm often asked if I had prenatal testing to make sure this baby doesn't have Down syndrome.  I don't know about your experiences, but John Michael has by far been my easiest going child, the one who only cries when he gets hurt, not fussy, quick to hug and kiss.  I'm grateful he has thus far been spared of major medical issues.  He turns heads everywhere he goes and his quick smile and wave can melt anyone's heart.  No, I only had a level 2 ultrasound.  I declined genetic counseling.  At this point, I don't need someone telling me that my chances for having another child with Ds, based on my age and having a child already w/ Ds is between 1 in 25 and 1 in 50.  What would I do about it anyway?  Nothing.  Just love this little baby like all the others.

So, that's why I haven't blogged in a while.  Partly, it's because I didn't have a photo to springboard from, and partly it's because I have so much internal wrestlessness going on inside and I'm praying for the supernatural peace that only Christ can give.  If you're the praying type... your prayers are most welcome.

Enjoy your Saint Valentine's Day.  Peace be with you (and me).

Our Growing Family... Enjoy Your Weekend!

Last Sunday we got a nice break in the weather to take a 2 mile loop nature hike along the American River near our home. The lush green grass, cool river breeze and blue sky dotted with white, puffy clouds was good for my soul and my brain.
This fence always cracks me up. It says "No Trespassing", which our family technically was doing by standing on that side of the fence. But that's what's so funny. There's just his lone gate, long abandoned by any semblance of a fence attached to it. How on earth do they keep anything out?

Below... our growing family...

A couple walking by offered to take our photo.

Yes, we're growing by another member, but really, I am amazed at how much my kids have grown this year!

Nicolas is now officially taller than me, although in this photo he's standing at a slight incline. I'm about 5'7" and, at age 12 1/2, Nic is just under 5'8".  It's strange to look eye-to-eye, but he still knows height doesn't replace authority. :-)  Anna and Greta are also tall for their age, and John Michael is relatively tall according to the Down syndrome growth chart... thanks to Doug's genes I'm sure. I'm not getting taller, just rounder at 22 weeks today.

This is such a cool place... so natural and serene. This huge tree must've fallen down 15 years ago or so. I can't remember it ever not being there. And by the well-worn path going under and around the tree, it's clear that many people besides us have stopped to enjoy the view and, perhaps, a climb.

I hope you find time to enjoy your weekend with the ones you love, too.

Saving (for) Sofia!

My friend, Jennifer Sanchez, blogs over at Three's A Charm about her 3 adorable boys, but especially about her youngest, Joaquin, who turned 2 yesterday. Joaquin is blessed with an extra 21st chromosome (aka Down syndrome), as are many of John Michael's little buddies, and the Sanchez' know what a blessing it is!

A few weeks ago, Jennifer announced that she and her husband, Hector, are opening their hearts and their home to try to adopt sweet little Sofia, who turns 1 in a couple weeks. Sofia lives in an orphanage in eastern Europe. She is healthy, other than a small oval window in her heart, and sports an extra 21st chromosome, too. The adoption is through Reece's Rainbow, an international adoption ministry that helps many children with Down syndrome find a permanent home.

The Sanchez family has set up a new blog, Saving Sofia, where you can find all the links, the story behind how Jennifer found Sofia, and a couple more photos of this sweet little girl. Adoption funds are being collected through various sources, some of which can be made as tax-deductible charitable contributions.

If you're a local friend, there will be a Crab Feed and Silent Auction on March 19th in Rocklin to help raise funds for the adoption costs. We'd love to have you join us. Contact me for tickets. Also, if you have a service or product you would like to donate toward the silent auction, I can help there, too. Email me at m.crumley@att.net

Won't you please help them bring her home? Every amount helps.

Thank you and God Bless!