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,

Heart Day

I hope everyone had a happy Valentine's Day celebrating whatever and whomever you love. For awhile I got pretty jaded about Valentine's Day and probably thought E and I were cool for not making a big deal out of it, but now I feel like, why scoff at an opportunity to love love? Sure the commercialism and pressure to buy gifts and expensive dates is overrated, but shouting love never is.

Anyways, February 14th is also is also Congenital Heart Defects Awareness Day and I should have shared information about it earlier. Heart defects are unfortunately one of the common health problems experienced by individuals with Down syndrome and we've become much more aware of this as we learn more about Milo's diagnosis and the DS community. About half of infants born with Down syndrome have a heart defect, and some are quite severe. More information about heart defects affecting individuals with DS is here.

With our diagnosis we were considered a "high risk" pregnancy and had many more ultrasounds most parents do. During one of these ultrasounds, almost halfway through our pregnancy, the doctors were concerned about Milo's heart anatomy and function. They scheduled an echocardiogram with a pediatric cardiologist to get a closer look but at time we were told it was looked like he might have a severe heart defect requiring surgery---the echocardiogram would determine if he needed it at birth or within the first six months. Despite how incredibly scary that sounded, we were grateful to be able to prepare and that the team was watching him so closely.

As it turned out, the echocardiogram went great---Milo finally cooperated and was in a perfect position to get images of his heart in all it beating glory, and though the cardiologist found a small atrial septal defect, he didn't think that it would be severe enough to require immediate intervention. Milo was scheduled for follow-up echocardiograms after birth and around two months old.

I wish I could tell you more about his echocardiogram the morning after he was born, unfortunately I was still hooked up to machines following the procedure I needed after his birth, and my husband was only allowed to wait outside the door while it was done. We were told that while the ASD was still minor but his oxygen levels dropped and he was quickly transferred to the NICU. The next time I saw him he was in an "aquarium" with tubes taped to him, an IV running and monitors beeping---something no parent wants to experience.

Our stay in the NICU (he also had jaundice requiring phototherapy) was only five days but it was five days too many. We told ourselves that he wasn't really "sick," just getting extra care, and that was a comfort to us; but there are so many babies and children in hospitals everywhere who are truly sick with little hearts that don't work the way they should. I'm part of a great online support group for moms of babies with Down syndrome and there are a number of babies who are already open heart surgery veterans or awaiting their surgery. I admire these little champions and their families so much. The thought of handing your child over for heart surgery is terrifying and no parent or child should have to go through that pain.

However, medical technology is so advanced and amazing and is giving these little fighters the repairs they need to grow, develop and live full, healthy lives. What an amazing world we live in that these tiny little hearts can be opened, operated on, stitched up and carry on. I encourage you to support the babies, children and adults living with Congenital Heart Defects. More information can be found at the American Heart Association, National Heart, Lung, and Blood Institute, Little Hearts, Inc., and the Dr. Mani Children Heart Foundation.

We are so happy to share that at Milo's two-month follow-up echocardiogram the cardiologist reported that his ASD was looking fine; he expected it to close on its own with no need for intervention or holding him back from activities (sign him up for baby Cross Fit?). We will go back at the end of the year when Milo is 18 months for another follow-up. We are so grateful for this good news and we continue to pray for those facing surgeries and other repairs. He may have a small hole in his heart, but anyone who has met him will tell you that this tough little boy does everything with 100% heart.

Keep these little heart warriors in your prayers on Heart Day and every day,

#HairChat

I can't speak for everyone, but among the first things I thought about as the news of a cancer diagnosis sank in was losing my hair. It's so shallow, I know. I promise my first thought was how long I'd be able to continue to give Milo breastmilk.

Anyways, there's so many types of treatments today and chemotherapy doesn't always mean that losing hair is inevitable, but with what I'll be given it looks like that's the case. So for a week--actually within the first couple of days--I've adjusted to the thought of losing this. I've never been one to cry over a haircut--I mean it grows back--but I have control issues in terms of I hate it when I can't control something, and this is beyond my control. There was something I could do though, and that was firing the first shot, so to speak. Bear with me through awkward selfies and glimpses of our horrible original 1970's bathroom.

Things actually worked out because I'd been wanting to cut my hair anyways and thought that hair loss would probably be easier with short hair. It was the longest it had ever been but my comfort zone is really not past my shoulders. It tangled so easily, took forever to dry, and was always in the way. "Mom buns" gave me a headache from being so heavy, so it was usually in a braid. I did get a terrible picture in Heidi braids, for posterity (I'd always wanted to have Heidi braids!).

...also apparently I have Bigfoot's hands..? (see bottom left)

And since it was for the first time in my life long enough, I wanted to take the opportunity to donate it. I've heard mixed things about whether or not Locks of Love and similar nonprofits can use colored hair for wigs or other efforts to benefit their organization, but my hairdresser said she'd take care of it and I figure I'll let them work it out when they receive it.

Julianne has cut and colored my hair for more than ten years!
Guess this will probs be my last visit for awhile,
though she did so sweetly offer to help me shop for a wig.
Can you believe we cut off an almost 12-inch ponytail?!

People have asked whether I'll use a wig or scarves or just rock a bare head and truthfully it's hard to say. I'd like to think I'd be confident enough to wear nothing or maybe a little scarf or cap... but I think I want a wig as an option. I wouldn't want to stick out or get attention or pity for this situation; and for example at my brother's wedding later this year, I want to look back at the family pictures and see the beautiful happy couple, not a reminder of going through treatments. My mind could change in the coming months, since I've never been through this before I guess I'll learn as I go!

I should have done this a long time ago!
My hair is so 'bleh' when it gets long and
feels ten pounds lighter and so much healthier shorter!
(Ignore the miles and miles of bags under my eyes!)

And knowing that many people have hair grow back differently that it was before chemotherapy I'm crossing my fingers that I'll get beachy waves with amazing natural highlights and none of these current random strands of grey!

It's only hair,

I regret to inform you

I guess I only update this blog when I have big news over the last year. I swear I'm trying to get better at that; I've thought about it over the past 12 months and wanted to write, it just hasn't been a priority. Plus I feel like I don't have a "thing;" I could try being just another mommy blog, I could write about our Down syndrome experience but that's not my whole life, I don't cook or craft enough to make a DIY blog...  Just not sure where I fit in. But I digress.

gratuitous cute baby picture :)

So maybe you've noticed but there's a thing where PR/marketing types try to bury negative news on a Friday afternoon; with the hope that it goes relatively unnoticed over the weekend and disappears with the Monday news cycle. Look for this during the presidential campaigns.

Anyways, I wouldn't say I'm trying to bury this, necessarily, but I definitely regret having this news to share---some background (to skip over if you don't like breastfeeding talk):

Some of you know that I've exclusively pumped breastmilk for Milo since Day 1. This wasn't our first choice and we tried everything to get him to nurse, but it is what it is. Over the last 2-3 months I've been having some issues with pumping and as I hand-expressed, noticed what I thought was a blocked milk duct, and despite my best efforts it only got worse.

Several visits to the lactation consultant later, she and the Ob-Gyn referred me to Radiology to make sure it was just a blocked duct and not something to really worry about... An ultrasound quickly turned into a mammogram and biopsies, and 3 business days later (this past Tuesday) I was called by the Breast Care Coordinator confirming that they did find cancer.

This was unexpected and although there's never a "good time" to get this news, it's obviously not welcome when I've got such a little guy with such special needs to consider. I've already met with an oncologist and a surgeon, and following some diagnostic procedures it sounds like I will start 6 rounds of chemotherapy within the month, followed by a mastectomy this summer, and then hormone therapy. My family has been incredible but I would expect nothing less.

It's not my style to think that my health problems would be the center of anyone's universe and I don't like to be the center of attention, especially for something like this, but because I know I have such great and caring friends I will do my best to keep this updated for you and answer as many questions as I can. On a related note, because people have already started to ask, there's nothing special I need except your prayers, good vibes, loving thoughts, or just a nod to the heavens for successful treatment and healing. And I would ask that you keep Enrique and Milo in your prayers as well---E always tries to do too much and I don't want this experience to be too hard on him, and Milo is too young to understand but I want his little world to remain as familiar and comfortable and stable as possible. I worry for my family; I am so blessed to be loved by the greatest people and I know this is hurting them.

My guys.

As for me, I'm grateful for the miracles of modern medicine that are giving me the chance to fight this and recover my health, I'm grateful to have health insurance that is taking good care of me, I'm grateful for the endless support of my family and friends. And I'm inspired by countless others before me who have bravely fought this battle; there are so many who are living with cancer in their rearview mirror and I have every intention of doing the same.

Maybe there is actually something I can ask of you: don't brush off your health concerns and make sure that the people you love take care of themselves. Also, always be kind.

With so much love,