Tuesday, June 18, 2013

The Annual Anniversary

Today is the day.
The day that, 8 years ago, two kids set out on a journey with hearts full of love and heads filled with dreams.
The day they promised to love and cherish each other all the days of their lives.
They had no idea where their road would lead, but they vowed to travel it together.
Till death do them part.

Today is our 8 year anniversary and I could write a lovey dovey mushy post about how much the past years have meant to me and how far we've come and how my husband is everything I ever dreamed and life is just perfect... 
Buuuuut why? When last year's post was so much more fun?
Happy Anniversary JJ!

Reasons I love my husband Part 2.

After all this time, he still pursues me with the same passion as when we first met.

He just never gives up.

He shares his love of early mornings with our children

and doesn't mind staying up with them at night.

He's attentive,


and truly enjoys 9 hour road trips that turn into 13 hours.

I love the way he looks at me

and still gazes lovingly into my eyes.

He really helps out..

keeping our place neat and clean.

No one else does bedtime routines quite like he does,

and I can always count on him to help me get that perfect photo op.

He's literally a lifesaver.

He's strong

yet only picks on people his own size.

He's a very involved dad. (leaving the kids at the top of the hill while he sleds by himself..)

And he never complains about what's for supper

He works hard

but really knows how to kick back and relax.

To JJ:
I wish I could tell you I have a nice dinner planned for tonight, but the truth is I haven't given anything past the next hour 5 minutes much thought..
I wish I could promise you some quiet time without the kids tonight, but they're all taking naps (and I'm not) so chances are they'll be up later than me tonight.
I wish I could tell you I cleaned the entire house for you today, but... well.. HA!
I wish I could tell you we are going on a nice date, but remember that one time a few weeks ago that we went out (to Menards)? Yeah.. that totally counts as our anniversary date.
I wish I could remember what you really wanted as a gift, but I already forgot a therapy session scheduled for this morning, so don't expect too much..
I wish I could say you can come home and relax tonight but actually the lawn needs mowed, the goat fence needs finished, and the boys really want to work on the tree house with you..

I guess I can't guarantee much, but I will promise you this. 
Some night after the kids go to bed and the house is quiet 
we can turn the lights down low and do something really special. 
I will let you pick whatever grimy fish catching show you want on Netflix and I will watch it with you.. 
While you're rubbing my feet...
Thanks dear!

Our life is not perfect..

but that's what gives the character that makes it beautiful.

And I wouldn't want to share it with anyone else. Love you!

Wednesday, June 12, 2013


We had our final ultrasound last week.. And are currently accepting any and all boy/girl predictions. 
Winners will receive the exciting grand prize of... 
exclusive bragging rights!!

Baby Watkins #4

And just because I'm nice here are the ultrasound pics of the other kids at this stage for comparison..
Any resemblances?

Okay, I realize these pictures aren't even comparable, with Ella's being the only other 3-D one and all three being in completely different positions, but hey--don't say I didn't try.

P.S. How is it possible that after reading through OVER 100,000 (Yes, I said one.hundred.thousand.) baby names I found less than ten (boys and girls combined) that I kinda sorta halfway like?? 
That's like.. .00001% or something, isn't it?
Suggestions anyone?

Friday, June 7, 2013

The Absent Minded Blogger

So remember that one time I wrote that one blog post that seemingly had no point or purpose or meaning beyond my senseless ramblings? What?? You need more clarification? Okay it was this one about when I first realized something was different about Ella while I was trying to take newborn pictures of her. I couldn't seem to capture her expression, her essence, her beauty and it bothered me that something just seemed different. At the time I wrote that I thought I did have a point to that post, but by the time I got to writing the end I had completely forgotten what that purpose was and tricked myself into believing there really never was a purpose and that I should just post it as it was. Well.. turns out there was a purpose and as luck would have it I actually remembered what it was. A mere five months later, but better late than never, right? I'm claiming pregnancy brain..

See, there's something I've never told you about Ella before. Something I've been holding back.. Her and Cindy Crawford have much more in common than those famous brunette waves and absolutely stunning eyelashes. (Ella's are real though.. just sayin) They have both been photographed by the same famous world renowned photographer Rick Guidotti. Yup.

Okay.. this one was actually taken by my friend Staci but I know Rick took one very similar to it..
I just couldn't find it right now. Thanks Staci!
When we went to Chicago last summer to the CdLS National Conference there was a photographer there taking pictures of all the kids and their families. Here is his story (taken from his website).
Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti.  Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.
So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure. It has always been about beauty for Rick.  “In fashion I was always frustrated because I was told who I had to photograph.  I was always told who was beautiful.”   It became clear to him that it was essential for people to understand and see the beauty in our shared humanity. But how? How do you lead people down a different path?  How do you get people to see those with differences not as victims, but kids and people first and foremost?  The pity has to disappear. The fear has to disappear. Behavior has to change. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society, as beautiful.
The photos give people the permission to see beauty and interpret beauty in their own right.  Not to see beauty that is dictated by industry’s ideas of what is acceptable.  What started with photographs, has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them.
Wow. After hearing his story I was completely humbled that someone who had no apparent personal connection with someone who was "different" could see something just by standing on a street corner that I myself, who DID have a very personal connection, could not. After meeting Rick at Conference I have the utmost respect for him and the work that he does. I am amazed by how he effortlessly captures beauty in all forms, not just the forms society dictates. He has a special way of using his unique personality to bring a spark to our kids' eyes and make them feel like too many others don't--just like a regular kid. And I love his mission to bring a human face to these genetic conditions. I know I'm not alone among my SN friends in recounting our D-Day (Diagnosis Day), when our geneticist pulled out her giant book of genetic defects and showed me pictures of the syndrome she thought Ella had (not CdLS at that time). The pictures were TERRIBLE! As if a mother couldn't be more scared for her child and their possible future at that time, the pictures doctors show most of us look as if they were taken at least 50 years ago of children in undesirable positions and situations and give absolutely no hope for the life ahead of them. Another source wrote, "
Positive Exposure's challenge to the way the medical community sees genetic differences, and their goal of replacing the dehumanizing images from medical textbooks with photographs that speak to/represent the person, not just the condition. Joanna Rudnick states: "It's a remove the "black bar" movement and Rick won't be satisfied until a new parent can Google a child's condition and see one of his photographs - of humanity of motion of childhood - rather than a disassociated body with a black bar masking and shaming their identity."
Exactly. And the reason I was reminded of what the purpose of that long ago blog post was, you wonder? Because I saw someone post on Facebook yesterday that tonight (Friday) Rick and his work will be featured on NBC's Rock Center. A few years ago this would have been just another heartwarming story to smile over before turning in for the night. But now? I cannot wait to watch it. I am honored to have met this man and am forever grateful for the ways Rick and his photographs are changing the world and how society views our children.

Wednesday, June 5, 2013

One in a Million

When I was pregnant with Ella I got asked a lot "Do you hope you're having a boy or a girl?" Of course I knew it didn't matter, yet I always jokingly (kindof) explained that because we already had 2 boys I didn't care if this baby was a girl since we planned on having at least 4 kids, but if it wasn't, then that last one better be a girl. I love my boys dearly, don't get me wrong. I love watching their adventurous spirit, seeing the 'traps' they make in the sand pile to catch wild animals, listening to them make elaborate little boy plans while working on their tree house, seeing them chase toads and catch worms, and even watching everything possible turn into a weapon of some sort in their hands.. But yes, I did hope for a little girl someday. Yet that desire for a little girl went beyond a yearning for pink frilly tutus, adorable oversized flower hair bows, and sparkly glitter shoes. I wanted a girl for a much deeper reason. I was always open with people who asked that I would love an opportunity to raise a girl because I feel there is a serious need for "good girls" in today's society. I'm not talking about goody-two-shoes girls who always do the right thing, please others, and follow every rule.. No, I wanted to raise a "good" girl who was strong. Capable. Confident. Who stood up to the lies society tells young women about how they should dress and behave and chose to defy those rules. Who knew how to have fun without the influence of alcohol. The kind of girl who was fun and carefree, yet has a deep heart of understanding pain. Who chose to be an example to her friends. The girl who has a rock solid relationship with God and lives her days honoring him with her body, mind, and spirit. The kind of girl with a pure heart who is beautiful inside and out. I longed for the kind of daughter who would confide in me about her dreams, giggle with me about boys, stretch out on my bed and watch movies, and ask for my advice when it came to troubles with friends. The kind of girl who had strong roots, yet when the time came, was ready to spread her wings and fly into this sinful world and make her mark.

I wanted to raise that one in a million girl.

Which is a big part of the reason I was so devastated when Ella, my girl- my girl who I had elaborately planned the world for- was diagnosed with Cornelia de Lange Syndrome (CdLS) at 6 months old. All the dreams I had for her, everything I had spoken of, it was all washed away in a single second. I was heart broken. There was no way I could raise that one in a million girl now. My dreams, my visions of the future were shattered. Why God? WHY? You knew my heart. I told you I was going to do it your way. I told you I would raise her to honor you. I told you she would be a one in a million girl. So why did you take that away from me? Why did you disable her? Why did you give my girl a debilitating rare genetic defect when she should have had the world? Why not someone else's child? Someone else who wasn't going to raise that one in a million girl? Someone else who didn't care about that. Why me? Why Ella?

I spent many months trying to hide Ella's syndrome, worrying about the way she looked, wondering if anyone noticed there was something "wrong." I made excuses for her droopy eyes (she did just wake up), and only posted pictures where they looked the most open, trying to make myself believe that the doctors were wrong because "See? See that one picture out of the thousand I took that her eyes look almost normal?' That obviously means there's nothing going on.." I thought maybe we could only hold her facing forward in church so no one behind us would see the differences. I made up reasons why she was delayed in achieving milestones (She was 3 weeks early! She spent 2 months of her first year in the hospital! If you took out that time, she would be really very close to being kinda sorta on track..) I tried to dismiss the ways she was different and force her to fit into the box I had long ago created of what my daughter would look like and act like and live like. It was too difficult to believe that my one in a million girl was not to be like I planned.

Yet, as time slowly and oftentimes painfully passed, something began to happen inside me that I wasn't even aware of. My grieving heart slowly started to heal and my eyes were opened beyond anything I'd ever experienced before. Yes, the developmental delays were still present, but I started to not notice them as much. She was late in crawling and walking and talking. Yet her smile and personality were a delight for everyone who came in contact with her to be around. The classic CdLS facial features with her slightly droopy eyelids, button nose, and small statue surely played a part in the way she looked. But when I looked at her those features weren't screaming at me anymore and I suddenly saw those things less and less. Instead, I saw strength and beauty that went beyond those features. I began to see the ways she wasn't just a "defect". I began to love her for who she was and how she was created, the ways she was beautifully herself, even if it wasn't the way the world, and unfortunately myself at times, defined beauty. I began to see her strength, fighting for her life, her tiny body hooked up to a ventilator, a machine doing the work of breathing for her when she was too weak. I saw her with tubes coming out of her body in every which way. I saw her at her weakest moment. And I saw her fighting back. I saw her struggle to overcome the odds. I saw the unique way her eyes opened, the perfect arch of her eyebrows, and her tiny toes. I saw her for the amazing uniqueness that she was instead of the nonexistent image of the daughter I was grieving the loss of, that had really only ever lived in my mind.

As I learned more about Ella's rare genetics I discovered that it is estimated that only one in every 10,000 live births result in CdLS (although some estimate it is even less than that). Still holding onto my dream, I remember thinking, 'Well, that's not quite one in a million, but I guess it's close.' And then the other day I read something new. I learned that the American Journal of Genetics states that only approximately 1 of every 15,000 fetus' with CdLS survive as far as birth. Let that settle in a moment. Only one of every 15,000 fetus' with CdLS survive as far as birthNow, if one in every 10,000 live births result in CdLS, yet only 1 of every 15,000 fetus' with CdLS even get to birth.. then that means... Well that means that if I were a smarter person there must be some sort of elaborate scientific mathematical equation I could come up with to figure out just how many pregnancies total started out with a child with CdLS, and the statistics on how few actually survive to birth and even beyond... And I'm sure I would find it to be a number.. a number that would now be nothing more than mere formality of confirming what I already know. 

Ella already is and always has been my one in a million girl.