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,

The C-word

So I've kind of put off writing and sharing this with the world, though some of you I've spoke to individually know a bit more about what's been going on. But I have words and pictures to spam you with for Milo's birthday in a couple days so I thought it was time to get this out of the way.

I haven't written about my current cancer fight in awhile and I guess you could say it was a bit of a mental play on my part --- if I waited until I had good news to share, it would be some kind of self-fulfilling prophecy or something, I could manifest the positive progress I was waiting for... Bear with me because this turned into a bit of a novel.

It also hurt to write about something so scary. I generally keep it pretty positive and for awhile we weren't sure how do-able that would be. Prior to starting my chemotherapy I had a PET-CT scan that would show if there had been any cancer activity besides the tumor we found in the biopsy --- and the results showed that it had in fact spread pretty aggressively. I will never forget sitting with the oncologist, next to my dad who was holding Milo, and hearing that the clinical terms to describe my condition included "metastatic," "incurable," "inoperable." How could this have gone unnoticed? How long has it been there? How quickly had it spread? How could my body, which created and grew and delivered and nourished the most perfect baby boy less that a year earlier, now betray me in the worst way?

The reality now is that I will live with this disease for the rest of my (long and fulfilling) life. It's already spread beyond its original location meaning that it could go anywhere and I'll be on-guard for that every single day. Given the current treatments available, I will continue to get an IV full of drugs every three weeks, indefinitely. The reality, pardon my language, is #fuckcancer.

But like I said, I didn't want to share all this bad news until I could follow it with better news. And, Praise God! there's been plenty of that --- I've had an incredibly easy time handling chemotherapy. It's weird how quickly it started to feel routine. The first day is the longest so they can deliver the drugs slowly and monitor your reactions each time,  so E and I binge-watched Mozart in the Jungle and it was actually almost like a nice day date, even though I stressed over leaving Critter for the longest I'd ever been apart from him. 

Since then I've finished my fourth cycle of chemo and I am still feeling fine overall; a bit of upset stomach here and there and sometimes tired but honestly not different than being-up-at-night-with-a-baby-tired. We also requested an MRI to determine if anything had spread to my brain (my oncologist said she didn't see any symptoms but I reminded her I hadn't had symptoms of ANYTHING other than a blocked milk duct), and that came back clear! And one thing that I'm extremely grateful for is that the genetic testing I did doesn't show any markers for known hereditary predisposition to this or other cancers --- so while they can't test for everything, there's nothing currently that shows my family is at any more significant risk than they were before.

"You Are My Favorite Reason To Never Give Up"
#hopsitalbathroomselfie

After the third round of chemo I was scheduled for anther PET-CT scan to see how things were going and determine if we were on the right course. I prayed so hard leading up to it --- that we would at least not get bad news; that any improvement would be a good thing. I prayed that the chemo was doing its job and that every healthy choice I made was making a difference in stopping the spread of this disease and in reversing its toll on my body. I prayed that I'd have the strength to face whatever the results were and that we and my doctors would be guided to the right decisions. My doctor told me beforehand she was optimistic, given my reactions so far, and I prayed she was right. The day after the scan her nurse called me. After my first scan the phone call was short, and they told me to come in that same afternoon to discuss the results. This time the phone call was short, and gave me the news I'd prayed to hear, "your scan shows significant improvement." Even though she couldn't provide more detail until my upcoming appointment, we had so much thanks and praise and were overjoyed with this good news. I celebrated with frozen yogurt --- previously something I would often eat multiple times a week --- for the first time in months.

We had my regular pre-chemotherapy appointment about a week later with my oncologist and we discussed the PET-CT results. She showed us the film taken which looks a bit like an x-ray, you can see the outlines of my body and the spots lit up on the screen, for lack of a better description, show the tumors and their activity --- the brighter the mass, the greater the size and more active (that's an overly generalized description but you get the idea). Anyways, you can see in comparing my scans from February and April that after three chemo cycles the primary tumor in the right breast and lymph node, that started it all, have gone down noticeably in size and activity.


She said that this is the case for the majority of my tumors --- about 95% of the lesions have reduced in size and activity. This is great news! Praise God! The stubborn one so far seems to be the bone lesion, but they can explore possible other treatments if it doesn't respond well by the end of the planned six cycles.

Working on channeling this "Crazy Sexy Cancer Survivor" mindset.
I can definitely do hard things. Also I keep adding more arm candy.

Have I mentioned that I can TOTALLY feel the good vibes from everyone?
Because I can.

She's encouraged that I still feel really good, and it's possible that they may add one or two additional chemotherapy cycles as we get to the end of what's already planned. However, there has to be a careful balance between using the medicine to shrink tumors and not hurting the body by giving it too much toxicity. From what we've learned, most patients can handle about six to eight cycles of these toxic chemotherapy drugs, and those cycles will typically provide the maximum effectiveness in shrinking the tumors.


At that point I will stop receiving docetaxel which is more toxic, but continue to receive pertuzumab and trastuzumab, which are highly specialized to target my particular type of breast cancer and are showing game-changing results in clinical studies. I'll continue to receive these every three weeks indefinitely, until cancer activity picks up again and starts to progress or some new therapy proves to more effective or some other significant change occurs. The goal here will be to keep the cancer stable and stop it from progressing any further. It's possible that I may still be a candidate for a mastectomy after the chemotherapy, so if you're the praying type, you can pray with us that the chemo reduces the cancer elsewhere in my body enough that they are confident that surgery would be effective; and that these two amazing new drugs stop any further cancer activity and do their job of keeping my body stable, healthy and functional.


The oncologist said that yes, the best case scenario at the end of my six chemotherapy cycles would be to see no evidence of disease and though complete remission is not likely at this stage, it IS possible... But if it's possible I don't see why it couldn't happen to me. In my prayers and thoughts I remind myself and God (I'm sure He doesn't need reminding) that no good would come of me getting any worse, but SO MUCH GOOD would come of me being an amazing success story.

My success would be a win for the fight against breast cancer --- it would show that these drugs and treatments are effective and rightfully the standard of care. It would show that changing your lifestyle to keep yourself naturally healthy as possible can only help in the cancer fight. It would show that faith and prayer and positivity and optimism aren't just catchphrases that get printed on pink tee-shirts but truly powerful and transformative weapons in the fight against this terrible disease. My success would be a step towards making metastatic cancer first a manageable chronic condition and soon curable. I can already hear my doctors or even doctors I've never met telling their patients decades from now, "we had a young lady with a pretty rotten prognosis but she fought like hell and now she's happily still enjoying life and cancer is just a small part of it." I remind myself that studies and data may show typical results and prognoses and such, but the simple fact that I have this diagnosis at this point in my life makes me not typical --- I expect great things of myself and that I can be someone whose success helps mark a turning point in treating and beating this disease.

I saw a quote recently from another young lady, currently fighting and living with advanced stage cervical cancer, who summed it up, "I have cancer, cancer doesn't have me." And like Stuart Scott said, "You beat cancer by how you live, why you live, and the manner in which you live." I have so much faith that God put me on earth to be Milo's mama and that he and I have so much more to do together and share with the world. This is an ongoing fight and the incredibly blessed life I have is worth every second of it.

Be assured I'll never stop fighting, 

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, 

What's the Word?

We often take for granted the power of our words until words hurt us personally. But most of us can recall a time when best friend or significant other knew just what to say to push our buttons during an argument, or when a teacher, coach or boss said something to make us doubt our abilities and our contributions. What if instead that person (or in some cases, we ourselves) took a moment to find language that lifted up rather than put down -- what if we chose our words carefully in order to promote love, success, confidence, inclusion and peace?

When you use the R-word, even if you're not doing it intentionally, you're using language that seeks to exclude, to diminish, to degrade.

By using the R-word to describe something stupid, foolish, ignorant, ridiculous, or something you simply don't agree with, you're perpetuating discrimination against individuals with developmental and intellectual disabilities.

You're mocking, among other things, a spectrum of medical diagnoses, the hard work of individuals with special needs to broaden their skills and achieve developmental, educational, and professional milestones, and the work of advocates to create a more inclusive community and opportunities for individuals with disabilities.

We've come such a long way towards inclusion and more equal opportunities for individuals with disabilities, particularly developmental disabilities. A child like Milo who in a previous generation may have been institutionalized and told he could never walk, talk or achieve any level of independence (and that gives me chills just to think about) now has access to resources like therapies, education, healthcare and assistive technology to help him maximize his potential. This didn't come easy and has taken the tireless work of advocates to create a societal change. YOU can be part of that societal change and close the gap that still exists, simply by pledging to choose your words more carefully.

I urge you to take the pledge to end the R-word. You can find the pledge here on the R-word website or you may prefer to sign it via Facebook. Once you do, consider sharing the pledge with your own friends and circle of influence to help educate them about this important movement -- you have more power than you think!

Those of you who know Milo may recognize that the words best describing him (for now) are highlighted in white in the image I created above. The other adjectives (and any number of others not necessarily starting with "R") may or may not describe him one day, but what I hope is that in his lifetime we see an end to using one particular word used to hurt when there's a thesaurus (favorite dinosaur!) full of words that can help instead. It's time to retire, renounce, resign, retreat, reverse, recede and recall the "R-word".

Take the Pledge!

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,