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, 

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, 

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!

Fill Your Bucket

Have you filled your bucket today? If not, what's stopping you?

So we're all aware of the ALS #IceBucketChallenge. I've laughed at some of the more creative interpretations of it and shed a tear at some of the all-too-real testimonial from individuals actually living with ALS and seeing how it affects them and their families (I mentioned a couple in my #FiveGoodThings post). This campaign is pretty incredible.

That said, what it's really about it raising funds to help find treatments and a cure to improve the quality of life and longevity for those living with ALS. It's a terrifying and tragic disease that slowly takes away one's autonomy and independence. I remember being so touched the first time I read Tuesdays with Morrie and learning from someone who could accept this fate with such grace and dignity. So E and I will be making our own small contribution.

And I have to say I've been cringing a bit at seeing all this water dumped onto concrete patios and the like---we can't deny this drought! Thank you to those CA friends who completed the challenge standing on your brown grass ;) Not to mention that it's a reminder of how we take clean water for granted.... Although it's in much different ways than ALS, a lack of water has the power to strip away opportunities, dignity, health and independence.

So I'm also making a small contribution to Charity: Water in gratitude for my hot showers, drinking water, pool to swim in, and in hope that it can help change a community by improving health, sanitation, opportunities for girls to attend school, and for families to create an income. I really encourage you to learn more about the life-giving power of clean water here.

And really, water is life, right? It is fluid and constantly changing, it allows us to create and to fix mistakes and to grow food and support communities and to cleanse what needs cleaning. It's hard to think of a resource more life-affirming than water. I'm proud to be a small part in support of these great causes. Please consider donating if you can:

Donate Here!

Donate Here!

Ok, so enough soapbox on my part --- I accept the #IceBucketChallenge!

I don't know what the deal is with uploading a video,
but I tried all day with no success...
it is, however, on Facebook, Twitter and Instagram!

Count your blessings and fill your bucket,