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?

#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 than we deserve

Happy World Down Syndrome Day! How incredible that there is an entire day dedicated to a worldwide celebration of the lives of individuals blessed that little something extra. 

March 21 is World Down Syndrome Day -- 3/21 for Trisomy 21, referring to the three copies of the 21st chromosome that individuals with Down syndrome have. Last week I delivered awareness ribbons to Milo's pediatrician, our OB-Gyn who cared for our pregnancy, the genetics counselor that delivered our diagnosis, Milo's "baby school" teachers, and others that have been supportive of us in our short time as parents, but really this extends to everyone who has been so wonderfully encouraging to us!

"Thank you for being a supportive part of our experience raising Milo! 

We are just getting started and are far from perfect, but we hope that 

when you meet a family adjusting to a T21 diagnosis, 

you'll remind them that Milo is loved, thriving and is 

more of a blessing to our family than we could have imagined!"

I've only shared bits and pieces of our experience with diagnosis. Down syndrome came into our lives suddenly, I suppose; or at least once things were in motion they moved quickly. We had an NT ultrasound at 14 weeks pregnant -- and what I still think is funny is that we almost didn't have it; we knew the results wouldn't change whether we continued but since it was covered by our insurance I scheduled it around work at the last minute. Before I'd even driven home from the appointment I got a call that we needed to come in and speak to a genetics specialist right away. A day later she explained that the ultrasound showed "soft markers" for a genetic abnormality, and could be one of three conditions-- Down Syndrome or two much rarer, almost certainly fatal trisomies. I took a blood test to find out more and we spent a week worrying about the possible results. All I could think was, 'what if my baby never gets to hear us say 'I love you'?' 

When we found out that the blood test showed a 90+% chance of Down Syndrome, it was a relief. Sure we would have challenges, sure there is a likelihood of health problems that could occur in his lifetime, and yes there is uncertainty---but nothing in life is certain, right? When it all comes down to it, everything is a leap of faith and we have to trust that God doesn't make mistakes and will provide the strength, comfort, people and resources we need to face anything. 

That's not to say that the entire journey has been easy-peasy and roses, either. I'll admit that in the week we waited for our blood test results I read credible and not-so-credible websites and too many Baby Center message boards; trying to figure out how common it was to have a false-positive result from an ultrasound. I even tried to measure the fluid in the ultrasound image we had, trying to determine if it was greater than the measurement that concerned the geneticist. 

My worry, if we did in fact have a child with Down syndrome, or something that would affect his health and development even more severely, was not that we would be able to love, connect with, and care for our child... we were doing that already. My concern was knowing that, with a diagnosis, this baby's life would be just a bit more challenging from the beginning... not just because it would likely take him longer to reach milestones, learn some things, or develop the life skills to be independent like his peers; but because the world at large would see him differently. We could raise this child to the best of our ability and he could grow up to be the absolute best version of himself, and there would still be some people who would never accept him, never see his life as having the same value as someone "typical," who would question why we continued with this journey at all. 

Well I'm learning more and more to block those people out (they're usually the ones commenting on Yahoo! articles anonymously); which is not too hard because the sound of others supporting Milo and families like ours is SO LOUD. All around the world, individuals, families, advocates, professionals in medicine, health, education and research, and others are SHOUTING THEIR WORTH. We are more alike than different and everyone's life has value -- everyone has something good to contribute to the world. 

And we've been thrilled to see that already, Milo brings out the best in people. We've been so supported and wrapped in love, prayers and strength since the moment we shared the news that we were expecting him. And now that he's been earthside for almost 11 months (!!!!!) he's charmed everyone he meets, challenged expectations about Down syndrome, and perhaps more than anything, reminded people that he's just a baby like any other. He will do things at his own pace and maybe differently than others, but he will do it with an army of support and love behind him. 

I should add that our positive outlook on Milo's endless opportunities and potential is in part due to the fact that there's never been a better time to be born with or living with Down syndrome. Our society has made huge strides in acceptance of and inclusion of individuals with Down syndrome and other disabilities -- there are more resources available to foster development, for education, including college, for inclusion in recreation with their peers, for learning workplace and independent living skills and eventually putting those into practice as adults with jobs who live on their own or with roommates and even partners. We expect that Milo will have many if not all of the opportunities that any "typical" child will have, should he choose to pursue them. This is only possible because of the dedicated, brave families who came before us to fight for the rights of their loved ones to be able to live life to the fullest and have the opportunities to pursue their greatest potential. This is a very special club that we have become members of -- and the best part is that anyone is welcome!!

Please, do remember our family and share our story far and wide to remind the world that Down syndrome is a blessing, not a burden. We never expected to find ourselves in this journey but are so grateful that God gave us more than we deserve. 💙


Chromosomally Blessed,