Positivi-tee: Don't Ignore Stage IV

So a year ago yesterday I got the news that I was diagnosed with breast cancer. Worst day of my life until two weeks later when we found out it was already metastatic, boy was that a doozy. I won't go into it (I've written about it here and here, if you want the longer explanation) but basically what a year, right? 

I didn't want to dwell on Diagnosis Day too much (especially since it's also Enrique's birthday and I'll forever hate having those two attached to each other) but I did feel like I needed to do SOMETHING. When I was first diagnosed I told myself and everyone else, "a year from now this will all be over," and while I could not have been more wrong, I also choose to believe that the hardest part is over. I choose to believe that the treatments in research and development as we speak are going to be successful and that they will have an amazing impact on my life and that of others fighting this terrible disease. I choose to believe that just around the corner is something coming that will save my life.

But I can't just sit back and wait. So to recognize my first year (like I keep saying, one year down, 50--or more!--to go) of thriving with metastatic breast cancer, I'd like to raise an awesome amount of money for METAvivor Research and Support Inc., an organization that specifically raises funds to research metastatic breast cancer. Breast Cancer Wellness Magazine has named METAvivor the 2016 National Breast Cancer Nonprofit of the Year, and in October 2016 METAvivor announced its participation in the Cancer Moonshot initiative, with a commitment to funding $1 million in metastasis research grants in 2017, and $2 million in 2018 – all focused on Stage IV metastatic breast cancer.

This area of research is sadly underfunded--only an estimated 2% of funds raised for breast cancer research study metastasis--and one that is vital to winning the fight against breast cancer. Selfishly, I truly believe that I myself will benefit from the life-saving treatments that result from Metavivor's research grants; but more than that, I believe that we can help ensure that no other family will know the pain of losing a loved one to breast cancer. 

I've started a habit of wearing "positivitees" to all my chemo treatments and tests; I feel like it creates good vibes and just gives me a little boost. Therefore it seemed fitting to spread the positivity with a tee shirt fundraiser (If you wish to donate to Metavivor directly without purchasing a shirt you may do so here.). I asked my sister-in-law Cindy to help me with the design; I knew she'd be perfect because she's not only a talented graphic designer but also the daughter of a breast cancer survivor... and simply kind, generous, and always up for a project! Thank you Cindy for the beautiful design and putting up with all my little "tweaks." My campaign is NOW LIVE and will run for the next three weeks! We need to sell a minimum of 11 shirts to ensure that they're printed and distributed. It's super-easy--visit the linky-link here to select a unisex, slim-fit or child's size tee, order online and it will be mailed directly to you in about five-six weeks (you can read FAQs about the fundraising platform, Bonfire.com, here).

The quote on this shirt is one that I've repeated often to myself throughout this year and will continue to hold dear as I move forward on this journey--I can't change what's already happened and my anger, sadness, fear and frustration with the situation won't make it any better; and as much as I try to control it I can't guarantee what the future holds. But I know that God made me strong, incredibly stubborn, and gave me the most amazing people to help me along this journey, and that, combined with science and prayer is a powerhouse. The arrow going through a diamond has several meanings--a single arrow traditionally represents protection from negative forces and that you want to move forward despite what hardship life might throw in your direction, and passing through the diamond symbolizes courage and success.

For months now I have been telling my young oncologist (I'm guessing she's around 40... with a PHD on top of her MD, what have I done with my life?) that she will treat me until she retires and then pass me along to some other young whippersnapper, and now she's telling me that's her goal, too! I absolutely believe that I can do this for 50 years, unless a cure comes along first! I've one year down, and I know that I've got at least 50 to go!! Please join me in raising funds for the groundbreaking research that will help win the fight against breast cancer! 

Thank you for ALL the support in the past year and going forward, 

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,

makeover my soul

Name that movie quote.

I needed a change. Or rather, the blog did.

To be honest I really don't know what this little space should be. Or what it will be. I love the idea of it evolving into a legitimate job opportunity, the idea of being able to work from home around Critter's schedule (and my ever-growing list of doctor's appointments) but I'm the worst entrepreneur and wouldn't know where to start to make this into something that could be part or full-time. ANd I still don't know what I really want to write about. I'm not a "Mommy Blog" even though I have so much to say about my first year as a mom. This isn't a blog about breast cancer even though I've been pretty preoccupied by that lately. And it's not a blog about Down syndrome, even though I'm passionate about the community, or about crafting and DIY even though that's probably my only real hobby at this point.

I'm not sure where this is going and I guess that sounds a lot like the rest of my life at this point --- I have a good idea of what I want it to be and I don't know how I'm going to get there. I know a few things for sure --- I enjoy having a place to write and share and appreciate hearing feedback, if anything I write is ever helpful to someone then it's worth any amount of time and effort on my part, and I want this to be a reflection of my best self. So it was time for a bit of change.

"Paint by Number Dreams" to me was about things that were missing, colors needing to be filled in, just an outline that had so much promise but needed to color to be full and vivid. Metaphorically speaking, much of that happened when Milo came into our lives. As cliche as it is, becoming parents made our lives richer and more meaningful (and chaotic and challenging) than we could have imagined; and in particular, finding our footing in the special needs community has offered us so much that we may not have otherwise experienced. Milo is the promise that has been fulfilled and more than I will ever deserve.

"Day by Grace" is a better reflection of where I am now... Most days are good, some are really, really hard; and all of them are made full and possible with grace.

Over the past few years and especially the past few months, I've put my faith in the belief that God has a plan for me and us. I have to, otherwise none of the bad things that happen make any sense. I know many would say that bad things are just part of life because its not fair, but I believe that yes, bad things happen, but they serve some greater purpose or plan. We don't know what that is yet, but that's where the faith part comes in. None of us are perfect of deserving or capable of fully understanding it, but God has woven our lives together and we just have to trust that things will work out the way they're supposed to... 

image via Etsy

I'm not saying I believe that everything that happens is good or for the greater good, sometimes things happen that are just terrible and don't make sense and are beyond my ability to understand --- like a few weeks ago when my heart broke over reading about several other young moms who were diagnosed with cancer during their pregnancies and didn't make it more than a year. What good comes from that we will never know in this lifetime. 

But I do know that grace finds us at our lowest point and helps make it possible to move forward and try again another day. Sometimes that might be a "sign," sometimes it's someone you love offering a shoulder to cry on, maybe it's even giving into our sadness and frustration by binging on comfort food but only for awhile. God works in mysterious ways, right? Grace meets us where we are and leaves us in a better place. 

image via A Holy Experience

So I'm trying to make it day by day, by grace. And I'm trying to be grace for others and recognize it when others are the daily dose of grace in my life. I'm trying to appreciate more and be more present (as I play Raffi songs and hand snacks to Milo asking him to please give me ten minutes to finish this post). Most of all, I'm praying to live with grace and gratitude and to use those in whatever path life is taking me down, so that wherever it leads my heart will be full and I'll be confident in the love that surrounds me.

Full of Grace, 

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,