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,

#Instafail

I had the most Instagram-worthy weekend... and didn't post a single picture. Does that mean it didn't really happen?

Here's what did happen (with stunning filler pictures courtesy of Reminisce Photography and Design):

- Milo went to his first parade. So cute. La Mesa has a little Flag Day parade that goes through the old downtown area and "quaint" doesn't begin to describe it. He wasn't interested in much except eating the snacks I brought and waving the little flag with a pointy stick that someone gave him, but he sure did look cute. And my favorite part was watching him sit with his great-grandma and seeing her show him off to her neighbors.

- The proprietor of the gym we sat in front of to watch the parade (and yes an MMA gym looks totally out of place in front next to the antique shops and such but they seem to stay busy) took such an interest Milo. I know parents of kids with special needs have mixed feelings about this and some people unfortunately have had really bad experiences; but we've been blessed so far that when people ask about our experience with Down syndrome, it's with a polite and genuine interest. He asked when we found out about his diagnosis and if we were scared... he asked if we've started working with him on therapy and intervention early... he asked if he's been healthy and does he like to eat... And I like to think that our easy conversation and seeing such an awesome little dude living it up like any other baby helps bring a better awareness and understanding to the fact that our family is just as dysfunctional happy as any other.

- I went to Target and also spent time in my own house BY MYSELF. After the parade my grandparents told me to just leave Milo at their house while I ran errands since he was happily playing, so I had the luxury of a solo trip to Target and Trader Joe's, then went home to put the groceries away... I don't think I've been alone in our house for more than 20 minutes since he was born. It's neither good nor bad, just different. I've gotten so used to having my little companion around constantly.

- Our little Critter got his first cold. We made it through the entire first year without getting sick (thank you breastfeeding and good luck, I suppose) but the sleepless nights earlier in the week turned out to be the result of increasing stuffiness and congestion and a general feeling of puny-ness.... or at least we think that's why he barely slept for three days, who knows. Poor little guy, but we're all surviving.

- I had a girls' night; for the first time in forever (or at least since before Critter was born). My college roommate occasionally comes into town working on the Broadway San Diego shows and sometimes I'm lucky enough to watch them with her. We didn't get much time to catch up unfortunately but I did get to watch Newsies #seizetheday. Jackie has been a wonderful, supportive friend especially these last few months and is so encouraging that the light and positivity I'm striving to keep in my life is making a difference in this cancer fight.

- This handsome devil and I had an awesome date. For my birthday Enrique wanted to take me kayaking (we did it once like two years ago and fancied ourselves enthusiasts) and booked this super-cool tour of the caves in La Jolla. the vain part of me was a bit concerned --- had this been my pre-baby, pre-cancer self, I would've thrown on my bathing suit and put my hair in a ponytail and been ready to go, but now... "I can't get my wig wet... What if my filled-in eyebrows and eyelashes come off... A bathing suit looks weird because my right side is still gross..." Well, the fact that is was overcast and cold, necessitating everyone wearing wetsuit tops along with the required helmet actually took care of most of those concerns. Sure I still looked like a dork but at least everyone else did, too. And the water was warmer than the air. And we saw sea lions and paddled into a cave. And I stood up on the kayak and then fell in when E stood up behind me. And we paddled our hearts out like Pocahontas and had an amazing time. It's true that Vitamin Sea is a cure for many things. I've definitely been guilty of neglecting our relationship at times since Milo was born and our little adventure was a good reminder that the two of us need child-free time together now and then to focus on each other and the fun that the two of us have always had together.

As it turns out, yesterday, June 5th is recognized as National Cancer Survivors Day (which I actually found out through Instagram). You can imagine that this is kind of bittersweet when we are in the midst of treatment and have accepted the fact that my diagnosis means the fight will never truly go away. But like Enrique said when I shared this with him, "Cancer survivor day is everyday in this house."

Everyday that I have with this family of mine and these friends who support me and in this amazing world is a blessing. It's more important than ever to fill my days with purpose and intent --- maybe some days that means just the routine of being a mom and getting through the day with a demanding kiddo because I knew choosing to be a mom would include those days, and maybe some days that means paddling a kayak across the Pacific ocean because once in awhile we should say 'yes' to adventure, even if it's for just a few hours. Either way, I need to remember that any day spent with the people you love is more than just 'surviving,' it's 'thriving,' and I've been fortunate enough to do that every day.

So I don't have any elegantly staged and filtered pictures of the weekend to share with you, or even any candid shots of all the great #sothishappened moments, but I've got the memories, the suntan, the songs stuck in my head, and the general feeling of a weekend well-spent, and that's good enough for me.

#thriving,

More Candles

So I have a birthday coming up. I'll be 33. The part of me that still thinks the '90s were ten years ago thinks that this is really old. But in cancer years I think we'd all agree that this is very, very, very young.

Maybe for a year or two birthday drinks were fun. that quickly got old (ha) as I hit the wrong side of my mid-twenties. For a long time I couldn't stand the attention my birthday would bring; every year I felt the pressure of getting older and not having accomplished what I thought I should have by then. And though I adore my family and celebrations with them, I really would've preferred absolute minimal mention of the occasion. I'm weird. I deleted my birthday from Facebook so that I wouldn't get the obligatory messages from people who I only heard from once a year. After a couple years even most of my longtime girlfriends, whose birthdays we've all known since long before Facebook, seemed to lose track of it, and that was fine by me.

Then it became a thing where NOT making a big deal of my birthday became a bigger deal and that was... also weird. I had hoped that Milo might be born really close to my birthday so that his would henceforth forever overshadow mine, but the little Critter came three weeks early and botched that plan. Finally in the last year I felt like I had come to a place where I could be content with just enjoying the love I felt on my birthday, have no expectations for the day, and not let it be a reminder of what I hadn't done yet. I had my family, my precious little boy --my greatest accomplishment-- and looked forward to the handmade cards he would make or goofy little things he would pick out as a birthday present for mommy as he got older.

Then cancer happened.

In fact, it happened on Enrique's birthday; which I will never forget and still wish I could change so that it wouldn't always be something he remembers on his special day.

Now, and for the rest of my life, I'll be coveting my birthdays, collecting and hoarding them and anxiously awaiting the next one while simultaneously willing time to slow down. I'll be constantly looking forward to Milo's next birthday so that I can see him grow and count another year with him, while at the same time clinging to his little-ness. I'll be forever trying to make Enrique's birthdays special in an effort to make up for his 2016 birthday/my diagnosis day.

For the rest of my life, birthdays will mean something more. And I now understand more than ever why they are always worth celebrating, no matter how much I feel like I haven't done enough in the previous 365 days. Sometimes, just making it to another birthday is reason enough to celebrate.

I had an infusion appointment this year on my birthday and I am planning to bring cupcakes to the oncology offices. Their job is to make sure that all of us getting treated are able to celebrate many, many, many, many more birthdays and I can finally say that I am looking forward to each one to come.

Celebrate,

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,

So happy you were born

Apparently I'm one of the million-something people who calls in sick the day after the Super Bowl... but I'm still a sniffly mouth-breather after catching E's cold late last week; and I spent all weekend (thank goodness we had no plans this time) just sitting around. How annoying is it that with 23,547+ channels there is still nothing worth watching most of the time...?

I'll forgive E for getting me sick though, and even for being a Tom Brady-had-JustinBeiber-hair-apologist (he has very strong feelings on this which I didn't realize the full extent of until after the game last night), because today is his birthday and I am reminded how very much I love him and how incredibly blessed I am that he has been my best friend for so may years and that I can now call him my baby daddy.

  

We are so lucky and blessed to have found each other and found love at such an early age and I'll never take the for granted (I'm so glad I've never had to date because I would've ended up as a weird cat lady by now and I'm much more of a dog person). There is no other hand I'd rather hold as we face life's challenges and joys. From finishing school to paying back loans to contemplating going back to school... to jobs lost and gained... to car trouble, flooded kitchens, sick family members, smaller-than-preferred bank accounts... to cheering on our teams, exploring new places, celebrating family members and to cherishing graduations, anniversaries, weddings, new babies, and more... to children dreamed of, rejoiced over, worried about and prepared for... to continuing to dream of and plan for our future. We've laughed more than we've cried, had more sunshine than rain, and he makes me smile every day.

I'm so impressed with how he has grown into such a thoughtful and responsible provider for our little family and I've always cherished the way he has taken care of those he loves... and is so friendly and open to and positive with anyone he encounters. He is a man of integrity, values, incredible work ethic and selflessness.

This is going to be a year full of changes and challenges for us and I feel so blessed to and grateful that we'll be together through every moment of it.

Happy Birthday, babe. May this be a year full of love, laughter and new adventures. May you know how much you are cherished and appreciated and admired and loved. May you continue to grow into everything God intends for you to be. May you have a Happy Birthday this year and every year to come.

With more love than you'll ever know,

and Fetus