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?

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,

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,

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 

Happy Name Day

Today is my Aunt Gloria's birthday, so... Happy Birthday!

She moved to France to go to art school when she was like, 18 or 20 and eventually settled in London. She is endlessly creative and resourceful; and can make something beautiful and unique out of basically anything.

Installation: plaster, steel rod, bitumen

Gloria Carlos skulls on display at Knebworth House.
Skulls are carved and individually adorned with recycled antique
brass, tin and iron objectswith hand-forged stands. 

Some time back, she starting making jewelry. Really unique jewelry that contrasted forged iron and precious metals.

A ring she made me when I started college that I've worn basically every day since...
and a pair of earrings that I receive compliments on every. time. I wear them.
**Not a professional or remotely competent earring model**

And at some point a friend of hers was working as a costumer for a TV show and buying pieces to use in dressing one of the characters. You might have heard of the show; it's called Game of Thrones.

What? Oh yeah, that's just Daenerys Targaryen wearing a one-of-a-kind ring and bracelet made by Gloria Carlos.

So with Comic Con closing yesterday, Game of Thrones being more popular than ever (I am SO bummed that the line to "Survive the Realm" stretched almost around the entire block because I was actually considering getting a House Baratheon tattoo --- I'm House Stark, but I love the antlers); it's perfectly fitting that there's now an opportunity for fans and admirers to get a custom-made replica of the Khaleesi ring or bangle.

Like, not a cheap knock-off, but a limited-time, made-to-order piece of jewelry ("jewellery" as I guess they say across the pond?) made with the same attention and method as the original.

It's a pretty cool thing and awesome for her. I hope anyone reading this will also take a look at her other work --- aren't those adorned skulls amazing! You can find her website and social media below. She has an amazing perspective and eye for the beautiful and unique.

Online store where you can order a Khaleesi ring or bangle

http://www.gloriacarlos.com/ 

Facebook

Pinterest

Twitter

So Happy Birthday, Aunt Gloria! May the coming year bring love, laughter and exciting new adventures and opportunities. Much love,

A Very Merry (low-key) Birthday

As I mentioned last year, I have had a difficult time with my birthday over the last few years. I know -- it's better to have one than not, the people who love you like having the chance to celebrate you, I'm not over-the-hill yet... but it's still uncomfortable for me to celebrate, especially given the disappointing year I've had, personally.

But, with an incredible family I felt loved. My mom and dad made plans to take us to the Padres game that night but I was surprised that my brother, sister and their "significant others" came as well. We sat in the Park in the Park beforehand to eat sammiches. We got the awesome give-away 1984 jerseys. Also, my mom and sister made the cutest little snack packs (and Sophia got me a birthday button).

The Padres honored first responders who saved lives and homes during the fire storm the week before, which was really moving. They played 80s music the whole game -- The Dancing Groundskeeper made and appearance (with backup dancers, which is now my new career goal). We lost. But it was fun.

And the next day we got to enjoy a delicious Memorial Day bbq with the whole family, who despite carefully declaring that it was simply a bbq in which we happened to have a birthday cake, still made me feel special. How can you not when you take home these incredible flowers?

Finally, because I'm considering it a late birthday gift; I have to share my giddiness at getting a personal tweet from Michael Kelly, who plays Doug Stamper on House of Cards. #gahhh I mean, my HOC withdrawal sparked a total fixation on this guy (mostly his voice, I could listen to him read the phone book; but how gorgeous is his smile--which we never see on the show). Anyways, he seems like a totally nice guy and I appreciate his support of gun regulations and I appreciate that he took the time to respond. Sure it's a little thing but apparently we both totally made each other smile. And now we're getting married. #DougStamperLives

So the birthday is over for another year and it didn't make me feel any better about being 31 and in the midst of a total career stagnation and not having babies or a house or a dog; but it did make me feel loved. And isn't that what's really the most important?

Making a wish for everyone to be surrounded by love on their birthday and always,

April Powers

Baseball is back. Grass is green. Papa's birthday is this week and my Dad's is later this month. I start a new job and hopefully bright things are ahead. Feeling positive and grateful for people and opportunities. 

I think ole' Bill Shakespeare said it best --- 

Xoxox, 

Easy Riders.

So E and I had been talking a lot about how nice it would be to take up bike riding. Not in a Lance Armstrong-way, just something that would be great to do on all the beautiful-weather days we have around here.

We figured the pros were:

1. It's healthy.
2. Once you get past the initial cost, it's relatively cheap (we have tons of bike paths near the beach and a really nice one at the lake literally  next door to our house).
3. It would be nice to start something as a couple that we can continue to enjoy later on as a family (I'm already picturing how cute he would be with a baby seat on the back or towing one of those kids' trailers).

There's probably others.

Anyways, since I had a few-years old beach cruiser still at my mom and dad's house (they upgraded my basket as a surprise and my brother so nicely gave it a tune-up-----THANK YOU!!!), I had decided I wanted to get him one for his birthday. After making sure we could afford it, I dropped a million hints when we saw cool bikes like "Hey, look at that cool one with the blue wheels." Honestly for as smart as he is he just does not pick up on little things like that, otherwise I'd have been worried he knew what was coming. :)

So I had a pretty good idea of what he'd want -- sleek and sporty -- and what we could manage, cost and maintenance-wise. As much as I try not to shop at WalMart because, stick it to the man, I ended up there looking at exactly what I had in mind. It was slightly on sale at the time so it was right in the range of what I wanted to spend and it had overall great reviews dating back a couple years (I read them all). From what I read from previous customers, it wasn't going to win you the Tour de France or do a good job of going up and down mountains, but was good for rides around the neighborhood or boardwalk -- perfect. They also said it was easy to assemble and to customize with various parts, if you so desired. And so with E still working during the week in LA for another couple weeks so I knew I could make it a surprise, I hit "order" and eagerly awaited the free warehouse-to-store pickup delivery.

When I went to pick it up, oh man. The box barely fit in the shopping cart. And because I was driving the old Corolla, I wasn't sure I'd get it home, either. But love conquers all and I wedged it into the backseat. :)

Also, I carried it down the block into our living room. It wasn't that it was excessively heavy, just that I couldn't get my arms all the way around it (for reference, see below). Should've planned better but that's how I live.

It came partially assembled, thank goodness, and I'm proud to say that I put the rest of it together myself. #IDidIt  Most of my assembly experience comes from Ikea furniture so this was a lesson in following directions written in actual words and not with little stick figure suggestions. Oh yeah, I dropped it on myself at one point and my entire leg was bruised but since I have a tendency to walk into furniture, doorways, etc. he didn't think this was weird, either.

before...

after!!!

Then I had to hide it. Even though E was gone during the week he was still home Friday night - Sunday afternoon and it was two weeks before his birthday. Amazingly, I got it into our closet. We have one of those shallow closets with sliding doors that runs the length of the wall and it is STUFFED because it's basically the only closet we have (#FirstWorldProblems), so I had to move the rolls of wrapping paper and our suitcase... and again, my darling thought nothing of the extra clutter in our room (and never opened that side of the closet since it mostly contains lesser-used things like winter coats, dressy clothes, and the aforementioned wrapping paper and suitcase.

The morning of his birthday he ran to the store for milk (thanks, babe!) and I quickly wrangled the bike back out so that it was right in front of the door when he walked back in. And he was surprised! It was so fun. I got a "WTF" out of him. He had nooooo idea that a bike had been hiding behind his khakis and a shoe rack.

How cute is he?
Also is that a shadow or giant stain on the side of the couch? :|

And so we ride! We've been to Mission Bay a few times now (the aforementioned miles of nice bike paths) and I've been riding around the lake quite a bit. And with summer coming I look forward to really taking advantage of being able to explore the beaches, neighborhoods, and other trails. The thing we're still trying to figure out is where to store them---I'd like to keep them covered on our patio but I've also looked at those cool wall-mounted racks. Any suggestions for keeping two bikes in a small-ish apartment?

What about you? Any avid cyclists or just weekend warriors? Anyone making a bike purchase any time soon? I can say that E really likes his, we did change out the seat to a wider, cruiser-style one because the original was waaay to narrow to be comfortable for anyone who has a butt, of any kind.

Happy Trails!