Down Syndrome Awareness Month

I've been doing my best to share some information each day this month about Milo and our family's life and this amazing community we are part of... and I've totally neglected blogging anything in months, not that anyone cares... but if you'd like to see what we've been up to I encourage you to check out our Instagram here - https://www.instagram.com/likeleila/

For the last day of DS Awareness  Acceptance Month I wanted to share someing that I've been meaning to for months... six months I guess. I made a video for Milo's first birthday and yesterday he turned 18 months... so even though I'm half a year late, better now than never? It's way too long and very indulgent, but I'm his mom, it's my right, right? And because of the huge file size I couldn't load directly to the blog so hopefully if you want to you can even see it by using the link (where is Pied Piper, a lossless compression platform, when you need it?!), because I've never used Vimeo, soooo....

https://vimeo.com/189646257

And while I have sooo much more I'd like to say, I'm going to wrap it up because there is a very demanding toddler here who is mad that he doesn't get to bang on the computer and has already thrown up on the rug and bitten me once this morning and we need to take showers and thank heck for Raffi videos because it's buying me just a couple minutes to finish this. I leave you with a few quick screen shots from the video because every post needs pictures, right?

Stormborn

So tonight is the season six finale of Game of Thrones and then we'll have to wait a long winter for new episodes. #SadDay Can the Starks hold Winterfell? Has Khaleesi overthrown the masters once and for all? Is Margery plotting something? Are the six million subplots and conspiracy theories known to those who have read the books taking shape?

So I wrote a long while back about my Aunt Gloria who is an amazingly talented artist whose iron and gold jewelry was selected for the Khaleesi on Game of Thrones. Such a cool achievement and line on a resume! Gloria is way too diverse to be defined by just a couple pieces she's made but when we started to notice cheap knock-offs of the Khleesi ring and bracelet being sold on Etsy, we encouraged her to make more of the real thing so that fans would have an opportunity to have something truly special. Well, that's easier said than done --- like all her art, the jewelry is typically bespoke, one-off pieces that are hand-forged and often experimental. To recreate multiples of the same ring and bracelet involved a long process of creating a mold, making each piece by hand, and individually finishing each one. A limited edition of 100 rings and bangles as worn by Daenerys herself is available here.

But I don't want to just give you a sales pitch because it's really not necessary. Her work is beautiful, she is the kindest and most generous soul --- and especially if you're a fan of the show, the opportunity to wear something integral to such an iconic character speaks for itself.

Since my cancer diagnosis, Gloria, like so many family and friends, has been a truly wonderful support, staying in touch even a world away and constantly offering inspiration, humor, compassion, and motivation. When she told me I had a package on the way, I was half surprised --- it certainly wasn't necessary and I know how much trouble it can be to mail something from London. And when I opened the box to find this inside, I was truly touched.

I don't mean to make this all about me, but.... well it is my blog. It's such an honor that she would send me No. 1 of 100. Everything that this symbolizes is incredibly special to me.

You can see the hallmark and number 001 inside.

Which brings me to this --- Daenerys Targaryen is my cancer spirit animal.

Each piece will be unique in its finish. 

She is born in the midst of a battle and a raging storm, just like I started this new chapter of the rest of my life in the middle of a battle my body had been waging against me without my knowing. She has to fight for her place in the world against those who doubt her, just like I am fighting for my place in this world against all the statistics, averages, and educated opinions who say that this is all but an impossible goal. She is compassionate and empathetic but committed to justice and ruthless against her enemies and well, this cancer is my enemy and deserves nothing but the absolute worst we can deliver, right?

It looks heavy and definitely feels substantial but it's totally wearable. 

And finally, she is the Mother of Dragons. Before Milo was born Enrique picked out a little stuffed dragon for him, with chewy parts and a rattle. Milo takes it in the car with him every time and I hear him shaking it in the backseat while I drive. When we were planning his first Halloween costume we decided he must be a dragon because he is so spirited and feisty, and I wore a "Mother of Dragons" shirt to go with it. E told me a few months ago that Milo is my fight --- his strong, stubborn, amazing little personality represents all the strength, faith fuel and yes, stubbornness that I am bringing to this cancer battle war. Not only does he represent how I will fight, but he IS the why I fight. A mother does not flee without her children.

ahhhhh he was such a baby!

So basically, get your hands on these incredible pieces of wearable art. Especially now while the UK is still part of the EU because who knows how shipping and importing and such will work after that all goes down....?!?!  And, if you're listening cancer, don't underestimate me because I might speak softly or am usually pretty easygoing... because I'm not going to stop the wheel, I'm going to break the wheel. 

Oh, and happy viewing of the Season Six Finale! Here's hoping Jon Snow's #manbun is here to stay.


Seven Blessings to all of you,

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,