a good and perfect gift

Life has been, for lack of a less cliché word, crazy lately. I almost completely forgot I created this little piece of the blogosphere to chronicle our everyday happenings. And that's just it: life happening, has trumped writing about life happening. With a 13-month-old under foot, I have yet to strike a true balance in retelling our life to the digital world.

In the last couple of weeks there was the weekend with two 5K's, a trip to Rochester, and a photoshoot. There were the basement renovations (currently in progress), that forced Colden and I out of the house at least three days a week due to noise, and the water being shut off. Since being approved for speech and OT, we now have all three (including PT) each and every week, on top of his regular medical appointments. Throw in a couple of mommy-and-me classes per week as well, and we are booked solid. Crazy doesn't seem so cliche anymore. Crazy is our life.

It's funny however, to think about the front I put on with others. When they ask about Colden, I often say everything is fine, and that he's doing really great. Both of which are true; but attached to those sentiments are so many other underlying emotions: worry, grief, anxiety. I spare the concerned bystander or extended family friend the real details: that I'm scared out of my mind on a daily basis. Raising any child is hard. Raising a child with down syndrome is a journey. I purposely leave out the fact that lately Colden is not sleeping, he is not eating, and he throws up almost daily. I always leave out that although we're approaching his 14 month birthday, I just bought him a shirt at Gap yesterday in size 3-6 months. I've come to realize that our journey is about being tested, and every day there is a new challenge.

Since going through a recent rough patch in Colden's care (his reflux seemed to rear it's ugly head once more this month- causing lots of gagging/throwing up, he's teething and doesn't want to eat anything, and we recently went on a medication to help aid in his constipation)- I was seeking solace in a story similar to my own. Enter: a late night Amazon shopping spree. I stocked my down syndrome reference library with every pertinent manual I could find. Books on fine motor skills, communication, and parenting. Despite my lack of time to read for pleasure, I even sprung for a novel (albeit related to DS).

48 hours later and I had finished A Good and Perfect Gift. The first book I've read since Colden was born- and I'm a reader. I just haven't wanted to spare my downtime (nor my sleep) to read. This book however- hooked me from the beginning with a story eerily similar to our own: first pregnancy, which was fairly easy, a quick birth (although scary), and a frightening diagnosis delivered moments after. I identified with every word on the page (even though the author uses a few terms that make me cringe and are viewed as socially unacceptable, she does correct herself later on).

Lots of chapters and passages have hit home for me. One in particular I'd like to share. The author, and mom to a little girl with DS writes:

'I needed to stop imagining that one day I would wake up and return to life-as-usual. It still surprised me really that Penny had Down Syndrome and that Down Syndrome was permanent. It wasn't as if a doctor would ever say about her extra chromosome: " It was touch-and-go for a while there, but now we're out of the woods." No, the woods- as vast and as beautiful and menacing and fascinating as they might be- were home now. We were there to stay.'

This passage touched me on so many levels. It took months for me to realize that this new life of ours- as crazy, hectic, and worrisome as it might be, was our new norm. Life-as-usual had begun.

As Colden giggles in the playroom, I think about the good and perfect gift we've received. I am so grateful he's ours. Even through the struggle, I would give up everything to spend my days with our perfect little boy. I'd request a bit more sleep, but I'd ask for our journey all over again.

He's so worth it.

welcome to holland

The day after Colden was born, our doctor gave us a poem intended to ease the pain of the diagnosis, and perhaps provide a bit of perspective on our new found situation. It's titled Welcome to Holland by Emily Perl Kingsley.

I can't put it any better, so I'll let the the author's words speak for themselves:

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.

Well, we've landed in Holland. It's time we learn Dutch....

To help find our way in this new world of down syndrome (aka Holland), I turned to where else, but the internet. One of the first major resources I discovered was a blog called Noah's Dad about a family in Texas raising a beautiful little boy with down syndrome named Noah, who is only about 15 months older than Colden. I cannot tell you how inspiring his site has been for Matt and I; nor how the wealth of information provided has helped us navigate this unknown landscape of Holland.

Rick, (Noah's dad), posts the cutest videos of Noah, along with helpful tips on everything they've encountered in regards to development, therapy, doctors, specialists, etc. If it has to do with down syndrome, they've addressed it. It's a wonderful resource for parents, friends, and anyone who wants to know more about DS. Noah's dad is paving the way for us, and letting the world know that it's OK to have down syndrome. It's really not scary at all. I hope Noah's dad never stops sharing this message; nor his tales of sweet Noah.

Another wonderful resource was given to me on my first Mother's day, a poignantly timed, and rather thoughtful gift from one of my closest friends, the book: Bloom: Finding Beauty in the Unexpected by Kelle Hampton. Ironically, it was released the day before Colden was born. Her story is so frightening similar to ours in that she didn't know, and found out shortly after the birth of her daughter, that her beautiful little girl had down syndrome. The images she uses to retell her story are absolutely gorgeous and convey perfectly the emotional journey she went through in the days, weeks, and months after Nella was born. She also keeps a current blog, Enjoying the Small Things, which chronicles her every day life with Nella, big sister Lainey, and baby-to-be. Plus, it's chock full of the same stunning images from her book. The moments and stories she continues to share remind me to not just enjoy, but to celebrate the small things in life.

I'll leave you with a quote from her book, a string of words that have found their way into the catalog of my heart; filed under my sweet Colden.

Love me. Love me. I'm not what you expected, but oh, please love me.

all organic everything

It's a new year, and the right time for a new motto.  Since my husband and I were at my parent's home in Colorado, something clicked regarding our food consumption ways.  I think many factors led to this proverbial light bulb going on that include- wanting to feel healthier, live a better life, but most importantly educating ourselves on the notion that food does, truly matter.  You are what you eat.  Your body is your temple.  These sayings exist for a reason.

Coincidentally, over the holiday gorging season we downloaded a book called Mastering your Metabolism by Jillian Michaels (host of the Biggest Loser).  Now, I am not one to read these types of informational books- I'm a novelist myself and prefer something with a story.  However, the addition of a Kindle into our lives makes reading article type books remarkably fun to me.  So alas, the hubby and I read the book together (well really he read most of it- kindle hog!), and I followed along where I could.  I won't go into all the details- but what we did read was alarming.  Beforehand I knew all the standard tips about eating non-processed foods, eating small meals to keep your metabolism up, choosing veggies over processed carbs, etc; but I will admit I did not know much about added hormones.  In fact, I didn't know anything at all.  Who knew that adding so many unknown hormones to your food would set you so out of wack??  It all makes sense if you think about it.  Your body has it's own rhythm and it's own delicate system of hormones to handle- so it's no wonder we feel fatigued, out of shape, or down right irritable after a day of processed simple carbs, high fructose corn syrup, and a bevy of hormone packed cheese and meat.  'Everything in moderation' no more. Everything organic here we come.

After finishing the book, we decided to make it a goal to change the way we think about eating.  And I don't just mean choosing yogurt and fruit over waffles and syrup; but to really make a lifestyle shift and proactively change our lives for the better.  I will warn you though, going organic is NOT cheap!  I was floored during my first shopping trip armed with my organic list of meal planned ingredients when I discovered that a 3-pack of organic chicken breasts was a staggering $11.84, whereas there hormonal equivalent was a mere $5.61.  Quite a difference when you are on a budget.  Also- two grossly ignorant things happened on this very enlightening shopping trip:

1- Upon checking out a woman in line next to me gasped and asked me where I had found my 'yellow' bananas, since the entire section of bananas she looked through were bright green (an indication they were picked far too early and pumped with hormones to handle the journey across the globe to a grocery store near you).  Before I could even reply she saw the tag, distastefully interjected and said, 'ohhhh, they're organic!'  As if this was a terrible crime that she herself would never commit.  Really??  Well I've been enjoying my perfectly yellow bananas all the way home.

2- When all my items were finally placed on the conveyor belt and the anti-organic woman had fled, I was able to stand near the cashier.  As she continued to scan my items the cashier came to my gallon of organic milk (which costs a mind boggling $6.99), and stopped.  "You know this is organic right?  Are you sure you want this??"  she asked.  'Uhhhh yes', I replied.   "I only ask because people always grab it by mistake and it usually makes their day when I bring up that they accidentally chose organic instead of regular- and I just want to make sure since it costs way more."  Why thank you for bringing this to my attention- I love getting lessons in food dietary matters from the 17-year-old cashier.  The saddest part about this story was that she actually thought the hormone laced milk was the regular, and not the other way around.

Despite this sampling of the nation's leading view that organic means weird, we are very excited about the meals we've cooked up so far.  First on the line up was sending the hubby to work with a container of homemade steel-cut oatmeal with a little brown sugar and milk.  For dinner we created a lovely baked talapia with asparagus, mushrooms, and peppers, along with a side of mushroom brown rice pilaf.  This was accompanied by a spinach and feta salad with yummy roma tomatoes.  We've also tried our organic chicken breasts marinated in a citrus dill sauce with a delightful cous cous and a bottle of Cakebread Sauvignon Blanc.  I bought some quiona and am nervous to try it out--so we'll see how that one goes :)  Our meals are by no means gourmet masterpieces, but the fact is we're trying.  And we're really enjoying the extra time we get to spend together making dinner as a unit.  We both feel inspired and energized about our shift to all things organic; literally with food, and metaphorically speaking with our minds.