And We All Shine On

Dear Milo,

You've made your first trip around the sun! The thing is, Critter, you shine brighter than the sun ever could.

 

I hope you always feel how much you have been loved since before we could even imagine who you would turn out to be. I hope you always know that you have been wanted and dreamt of and hoped for since long before I even knew your daddy. I hope you always understand that you make us so incredibly happy, proud, and joyful and that you have blessed us beyond measure. I hope many things for you, but mostly I hope you have love in your life; and you will because your daddy and I love you more than we could ever express.

We've learned so much from each other this first year, or at least Daddy and I have learned so much from you. We've had adventures and mishaps, routine and anything but, blissful happiness and frustration like I'd never experienced. We've had literally thousands of bottles fed, dirty diaper changes, hundreds of hours spent pumping milk, and typically two wake-ups per night.

You have the sweetest, most generous smile and the kindest eyes but you've got a stubborn streak and challenge that stereotype about "Downs kids always being happy." You have a tendency to startle easily at loud talking or laughter but your favorite fun is banging two toys together to make maximum noise. You have an independent and adventurous spirit but nothing makes you happier than seeing Daddy walk through the door every evening.

This hasn't been the easiest year. We hit rock-bottom the first time we walked through our front door without three-day-old you; but we got through it. We are learning as we go when it comes to things like advocating for you to receive more therapy; but we're managing. The worst possible thing about my diagnosis is how it could affect you; but I promise as long as I have a breath in me I will never stop fighting for more days with you.

But it's been an amazing year. You've been healthy and happy and growing and developing and learning. You've been surrounded by family and friends who love you. You've been the best thing that ever happened to me and Daddy.

I can't promise what the future holds and I am slowly learning to accept that now more than ever. But I can promise that you will never be alone. I can promise that Daddy and I will always try our best to make choices that will steer you towards love, family, God, and goodness. I can promise that we will pursue every opportunity for you to thrive and to have access to pursuits in education, health, hobbies, culture, sports, career, personal life, and whatever lights you up from within. I can promise that you will end each day knowing that you are loved. I can promise that your daddy and I love each other and you always. 

I will cherish the memories of the newborn you have were and I will cling to what's left of your babyhood; but I am so excited about the toddler you are becoming and the glimpses you show us of the little boy that will be here all too quickly. I pray that you are kind, compassionate, generous, and open-hearted. I pray that you love to learn, to explore, and to reach out to others. I pray that you are a kid who enjoys the outdoors, animals, sports and books, and that you are an adult who values family, friendships, work ethic and peace. I pray that your beautiful heart leads you to do good. You inspire people you've never met and you are changing the world just by being yourself. Your life is a blessing to us all. Thank you for making me a mama and for bringing more joy to our family than we could have imagined. 

Let's hold hands and hearts for many more trips around the sun together.

Happy First Birthday, sweet Milo.


I love you, I love you, I love you,

What's the Word?

We often take for granted the power of our words until words hurt us personally. But most of us can recall a time when best friend or significant other knew just what to say to push our buttons during an argument, or when a teacher, coach or boss said something to make us doubt our abilities and our contributions. What if instead that person (or in some cases, we ourselves) took a moment to find language that lifted up rather than put down -- what if we chose our words carefully in order to promote love, success, confidence, inclusion and peace?

When you use the R-word, even if you're not doing it intentionally, you're using language that seeks to exclude, to diminish, to degrade.

By using the R-word to describe something stupid, foolish, ignorant, ridiculous, or something you simply don't agree with, you're perpetuating discrimination against individuals with developmental and intellectual disabilities.

You're mocking, among other things, a spectrum of medical diagnoses, the hard work of individuals with special needs to broaden their skills and achieve developmental, educational, and professional milestones, and the work of advocates to create a more inclusive community and opportunities for individuals with disabilities.

We've come such a long way towards inclusion and more equal opportunities for individuals with disabilities, particularly developmental disabilities. A child like Milo who in a previous generation may have been institutionalized and told he could never walk, talk or achieve any level of independence (and that gives me chills just to think about) now has access to resources like therapies, education, healthcare and assistive technology to help him maximize his potential. This didn't come easy and has taken the tireless work of advocates to create a societal change. YOU can be part of that societal change and close the gap that still exists, simply by pledging to choose your words more carefully.

I urge you to take the pledge to end the R-word. You can find the pledge here on the R-word website or you may prefer to sign it via Facebook. Once you do, consider sharing the pledge with your own friends and circle of influence to help educate them about this important movement -- you have more power than you think!

Those of you who know Milo may recognize that the words best describing him (for now) are highlighted in white in the image I created above. The other adjectives (and any number of others not necessarily starting with "R") may or may not describe him one day, but what I hope is that in his lifetime we see an end to using one particular word used to hurt when there's a thesaurus (favorite dinosaur!) full of words that can help instead. It's time to retire, renounce, resign, retreat, reverse, recede and recall the "R-word".

Take the Pledge!

Captured Light

One of the things that I hoped to do before chemotherapy treatments and such started was get a good family portrait. It might be shallow, but in case I don't look or feel like myself at some point for awhile, I wanted to capture this moment in our lives -- when Milo is at such a fun age, when we've settled into the role of parents (as much as anyone ever can), when E and I have been each other's best friend and partner for more than half our lifetimes already.

I would have been happy with a decent i-photo in the Target parking lot, as long as everyone was smiling, but we are blessed to know Geri at Reminisce Photography and Design. Reminisce took the gorgeous photos of our engagement and wedding, and the sweetest newborn pictures of Milo.

I told Geri that she's documented all the important "beginnings" in our lives, and done it so beautifully. She (and her family!) has such a kind and loving and generous heart and she somehow read my mind and approached me asking if she could take family pictures for us as we set out on this new journey.

We received her email with the images with perfect timing -- just after doing battle putting a teething, cranky Critter to bed -- so we definitely needed the smile that they brought. Not only did they bring a smile, but they reminded me how very blessed I am to be a wife and mama to these two amazing guys, and how much we have to look forward to together. My heart is full seeing the way that E and Milo look at each other, the way his chubby little hands grab our fingers, the way his entire faces smiles. Geri is a beautifully talented photographer who not only captured the sunlight filtering through the trees, but captured the Light from within.

Needless to say, we highly recommend Reminisce if you need a family photographer in the San Diego area.

Hope you don't mind a photo overload. #sorrynotsorry

A sorority sister who is a two-time breast cancer survivor told me recently that there are positive aspects to this journey and that I will find them. I believe her. Even though this is a trial and I hate the way it's hurting the people I love, I am seeing so much good in others. I feel so loved by the well-wishes in the form of texts, emails and messages... People have cooked and cleaned for us, babysat during my doctor's appointments, and offered everything from rides to the hospital to doctor referrals to assistance with insurance paperwork to donated breastmilk for Milo. I only hope that someday, in some small way, I'm able to adequately show appreciation for these acts that deepen my faith in humanity. Until then, I'm going to hold these two handsome gentlemen close and appreciate every moment -- even the crying, teething baby at 3:00am.

With love and light,

Project Post: Payton's Pretty Purple Dragon

This is a project from last year but I thought it might make a fun Valentine's Day gift for a special kid in your life... or, I feel like there's a million springtime babies with birthdays coming up, so maybe grab a bunch of fleece going on sale after winter and whip up a few of these.

I was trying to do something special for my Goddaughter's third birthday last summer... she's a bright, sweet girl and although she probably would've been happy with any Disney Princess item I picked up at Toys R Us, I was hoping to make something a bit more personal.

Inspired by reading about another 3-year old whose favorite book sounded super fun; I went with a dragon theme. To go with the book Dragons Love Tacos (I read great reviews from parents before pulling the trigger on the order and I enjoyed it as soon as it arrived) I decided to embark on making a dragon cape.

Of course it had to be pink and purple. I chose fleece so that I wouldn't have to hem it (and it happened to be on sale since it was, you know, June), but I ended up liking the look of blanket stiching so I did a blanket stitch on every edge. I more or less used this tutorial as my guide, which really helped -- even though I wasn't interested in adding eyes or wings. Speaking of wings, I more or less "winged it" on the spike-thingies... I folded several layers of fleece together so that they had some bulk, and even though they flopped from side to side a bit, they had enough weight to stay standing. I thought the rick rack had a sweet "scales" look to it and added long pieces that could swing around. Finally, with my minimal embroidery skills I finished it with a little "P" for Payton in the corner.

Don't you love my model? :)
(obviously on a 3-year old it hangs down to about waist-length and the hood is nice and roomy)

I finished off the gift with adorbs mini tortillas and fresh tomato and avocado from the market so she could make her own tacos. Those were actually what excited the birthday girl most when she first opened it (the kid eats super-healthy which is awesome).

I don't think she understood the little cape right away, but I got a text from her mom a day or two later with her wearing it, and apparently she went through a phase where she liked to sleep in it after reading the book. :)

This is a totally do-able project! If you can do a blanket stitch or a basic line on a sewing machine, you can do this. I did the different sections (the body, the hood, the tail, the spikes) seperately to break things up, so altogether it took an hour or so a night for about a week. I'm sure it could be done in less time.

What kind of fun projects are you working on for kiddos in your life? I kinda' want a dragon cape of my own now... dress up was always a favorite of mine!