Reminding Me Why

I was silent for a year for many, many reasons - the biggest of which was probably just exhaustion (ha!), but the words and ideas have been forming over the past several weeks. This move has created a renewed sense of wanting to invest time and energy into this corner of the internets, and a desire to push past my tiredness, laziness, and perfectionism, in order to actually publish posts. I think I initially felt that it would be a way to update friends and family back home on life and the goings on, but this morning I was reminded of the bigger picture, and it is one that I can't avoid or ignore.

Advocacy.
Education.

Understanding.

Down Syndrome.

One of my favorite sayings over the past several months has been: "You don't know what you don't know." I didn't know that I was going to have a baby with Down Syndrome. I didn't know that I was going to be ushered into this group of people who have been impacted by something so small as an extra chromosome. I didn't know that I would (whether I wanted to or not) become a walking billboard for what having a child with Down Syndrome would be like. And you know what? I actually didn't know very much about Down Syndrome. And that's okay! You don't know what you don't know until you realize there's a gap in knowledge and understanding that needs to be filled. 

Social media plays an important role in that awareness, and it impacted my process of grieving and acceptance in the beginning of our journey (a story I'll tell another time), but today I was reminded of the responsibility I have been given. One of my all time fave IG celebs is a 6 year old girl with Down Syndrome named Chloe (Coco for short) who's life is documented by her mom on the IG account @lilcocobea. She is sassy as all get out, and loves to sing, dance, cook, and shoot her own make-up tutorials (no I'm not joking). This morning's post on her account was dedicated to a couple that had viewed Coco's account while they were in the parking lot of an abortion clinic because they had received a diagnosis of Down Syndrome for their child and they had decided it was the best option for them. Lilcocobea showed them, just by being herself and living her life, that maybe DS wasn't so scary, and gave them the courage to choose life for their baby. 

This is profound on many levels, most of which, I am sure, are not lost on you, dear readers. However there is a component to this that I never considered before I was standing where I am now, and that is: relief that there will be one more person in this world who will be like my Mildred Pearl. This is one more step toward allowing Mildred to grow up in a world where she may actually be able to have friends with the same number of chromosomes that she has. There is more to say on this subject, but I'll leave it there for now.

So, here is my opportunity to teach myself (I still am learning EVERY DAY about Down Syndrome), and others, about my daughter, and others in our beloved Trisomy 21 Club.

There is a blogging challenge for the month of October to write (and publish) a post for every day of the month of October. October also happens to be Down Syndrome Awareness month. So I have decided to share something about Down Syndrome every day for the month of October. Now, I have some ideas (and pictures... I'm sure I can scrounge up some pictures ;) to share. And I have some subjects that I've been meaning to research about for my own personal growth (relating specifically to DS and awareness), but that covers about 6 posts. So, although I'm sure only a handful of people would complain about daily Mildred pics ("Millie Mail" as I call it when I send them to the grandparents), I want to know what you have questions about!

What do you want to know?

Are you wondering about anything as you've been following my posts?
Do you have questions about terminology/ability/delays/etc.?

Have you seen or heard something from somewhere and you're wondering if its true?

I want to know!
Don't be shy. Don't be worried about offending. Don't be embarassed.

We don't know what we don't know, until we do. And how will we know more if we don't have the courage to ask? ASK! You can leave questions in comments, or private message me, or text me, whatever works best for you.

You are Millie's tribe, she needs you too.

-M

GF Churro Pancakes

Gluten-Free Churro Pancakes

Oh,  I have your attention now, don't I?!

Since discovering my food sensitivities 4 years ago (yikes! Time flies!), there have been just a few foods (surprisingly) that I have missed - and pancakes are one of the few. Over the last 4 years there does seem to have been an explosion of restaurants offering gluten-free (and dairy-free substitutes) and that is most excellent! I am fortunate in that my "allergies" are not anaphylactic, but the foods that I am sensitive to do make me ill enough to interfere with everyday life. I digress, this is not the important stuffs.

Because I am also "allergic" to dairy (lactose AND casein), soy, and tapioca, I am typically still unable to eat the gluten-free pancakes at restaurants, or use the store bought mixes at home, because it is my experience that 95% of all gluten-free baking mixes contain tapioca starch, and many still contain milk and soy.

Coco's Restaurant and Bakery (which is like a Perkins, for anyone not familiar with Coco's) serves gluten-free pancakes that I can have and they are DELISH! And so began my search to discover the magic ingredients/mix that they use.

After searching and searching and searching (to no avail) I stumbled upon Bisquick's gluten free baking mix which is, surprisingly, free of all the things I can't have! The mix is pretty decent on its own (using the pancake recipe on the box), but I've played around with a few things and today....

EUREKA!

Gluten-Free Churro Pancakes.

I die. I can't think of anything pastry like that I have eaten in four years (that didn't have at least one ingredient in it that made me sick later) that tastes SO DELICIOUS.

Honestly, like walking along Disneyland's Main Street, delectable cinnamon and sugary treat in hand. It takes me back to better days!

Dramatic performance aside, here are the deets:

2 cups Bisquick Gluten-Free Baking Mix
2 cups original almond milk (or milk of your choice, we tried vanilla almond milk initially because that is what we had, but I wasn't a fan).
2 eggs
4 tablespoons canola oil (calls for veg. oil, tried with olive oil and like canola better)
1-2 tablespoons vanilla extract (I only used 1 this time, but think it would be better with 2)
Cinnamon and sugar mixture

Mix together: baking mix, milk, egg, oil until blended
Heat up canola oil in pan, pour approx 1/2 cup batter into hot oil to fry, flip when ready
Sprinkle cinnamon and sugar to taste when done



I made big and small "cakes" and found that we actually preferred the bigger size to the smaller ones. Silver dollar sized "cakes" ended up being mostly fried and more like a fritter while the large pancake size had crispy edges and soft dough in the center like a churro.

Let me know if you try it, and what you think! I'd also love to hear any other adaptations you may make. :)

Enjoy!

Picking Up Where I Left Off.

We made it to the Pacific North West! (Nothing like just jumping back into the blog-o-sphere, huh?)
In an effort to shake off the dust that has settled on this blog for the last year (yikes! what can I say? LIFE, man!) let me just do a quick recap of our biggest, most recent news:

We moved.
From Southern California to Eastern Washington (state).
We threw away a bunch of our crap (more on that later), and packed up what we could fit into our CR-V, and hit the road.
We didn't take nearly as many pictures of our journey as I would have liked, because my phone was full. Isn't that always the way? Don't worry, I fixed it, you won't be without pictures in the future.

For now, photo dump of some things from our trip to settling in:

Excited to hit the road! (Playing in the fountain at the mall while Mom and Dad say goodbye to family and friends)

We saw a lot of Heaven in the skies on this trip, a constant reminder of Grace (and Aunt Elaine).

This town was a last minute stop before the middle of nowhere, and it was itself also basically the middle of nowhere, but mexican food!!

Nothing like a little dose of happy along the road...

This sweet little pie was SUCH a trooper! So happy to be out of the car! 

Street art in Bend, OR.

Spent a night at Great Grandma's place on the way to our new home! Don't let Millie's face fool you...she LOVED it.

happy to be in our new town!

our  neighbors. free range cattle. no smell. i'm sliiightly obsessed.

trying to feed a busy busy toddler without a high chair is a disaster. this is making it work! play chair converted to high chair with a belt! eating off of the coffee table. just call me MacGyver Mama ;)

top knots and mocc boots and that sweetness... i can't handle her.

Grandpa spent our first two nights in our new place with us. More on that later because I don't want to cry.

An Open Letter to my Daughter on Her 6th Day of Life

My little Pearl,

It has been just 6 days since you challenged me to be the bravest I have ever been. At 39 weeks along in my pregnancy, your amniotic fluid was low and they sent me for an induction. After 24 hours, 2 doses of Cytotec, 2 failed epidural attempts, 1 successful epidural attempt, a dose of Pitocin, and an emergency c-section, you came into the world crying. 

It's true what those poetic mamas always say. The sound of your voice (though it was a strange sound because you had fluid in your lungs) was the most beautiful thing I had ever heard, and it awakened something deep inside of me: a love for you, my first child, my newborn daughter, my Mildred Pearl. 

Your doctor began your newborn screenings after they invited your daddy to cut your umbilical cord, but all I could do was wonder what you looked like, how big you were, if you had that full head of hair that I had ordered... Your daddy returned to my side while they cleaned you up and I could hear the nurse telling him that you were struggling to keep your oxygen levels where they should be (you were hovering around 80%) and that they were concerned that you might have an infection. They admitted you to the NICU for observation and care, and your doctor added that you were showing soft markers for Down Syndrome--the shape of your eyes and the thrusting of your tongue--and she ordered a blood test to confirm. 

I caught a glimpse of you as the doctor and nurses rolled you away to the NICU. Your daddy asked them to hold you up so I could see you, six feet from where I was laying while they finished surgery. I cried at the sight of you. You looked just like newborn me. You were my daughter and I loved you instantly.

I didn't see you again until almost two hours later when they wheeled my bed next to yours on my way to a post-partum room. When I saw you, they had your arms and legs strapped down because you were so squirmy and strong, and you had tubes attached all over you. Even in that condition you were beautiful, my new baby. We had to spend the night apart from you, though. Not getting to hold you, was awful. I don't think I will ever forget when they placed you on my chest for our first skin-to-skin time almost 24 hours after you were born. It was heaven. It still is. You, my Millie Pearl, will always be my little glimpse of heaven. 

Over the next several days as you were released from the NICU into our care, your daddy and I soaked up every moment with you and enjoyed getting to know you, discovering all of your little quirks and peculiarities. I spent many of those hours staring at you, trying to see the Down Syndrome that your doctor saw, but I couldn't. Yes, your eyes are almond shaped, but so are your daddy's. Yes, your nose is tiny, but my nose is small too--and you're a tiny baby! Yes, you thrust your tongue, but so did I, and your grandma, and your great grandma too. They're wrong, I thought. Those were all just family traits.

Yesterday, when we took you to your first check up, the doctor told us that your genetic test had come back positive for Down Syndrome. I fought back tears, (mostly from "baby blues", but also, partially, from shock). He gave us an overview of the upcoming appointments that would make sure you were healthy (you are), and left us alone to pack up your things. I cried. I held you close to me. I hugged you. I kissed you. And I cried. 

I want you to know why I cried, sweet girl. I want you to know that I am not disappointed in you. I cried for you. I grieved the loss of things that you might not have in life, and all the hurt or frustration you might experience along the way. I mourned the way some people might react to you, or treat you when you're older. I ached for all the struggles you might have to endure because of your condition. My mama heart wants so badly to protect you, to save you from all of that, and I can't. 

But in my sadness, the Lord whispered a beautiful truth: you are created exactly how you were meant to be. You were knit in my womb before I even knew you were there, and you have had that extra little chromosome from the time your DNA was formed. This is not something that just happened to you on your fifth day of life when we found out--this is an integral part of your creation that we are just getting to know (along with that cute little pouty face you make in your dreamy sleep). 

Your dad and I want you to know some very important things, Little One. We want you to know that you are capable of anything you commit yourself to--just like everyone else. We will help you in every way that we can, to develop your strengths (and strengthen your weaknesses) so that you can accomplish every single one of your aspirations. We want you to know that, because we love you, we will challenge you even when it feels impossible, because it isn't impossible, and you ARE capable. 

We also want you to know how beautiful you are. I have realized that part of the reason I don't see Down Syndrome features when I look at you, is because I just see my daughter, with a tiny little button nose, small, intricate ears, a tongue thrust just like her mama, and eyes, a round face, hands and feet just like her papa. You are more like us than you may (someday) like to admit. I want you to know, that people have told us over and over and over again what a pretty little baby you are. And they're absolutely right! Like a beautiful little doll. Our little love.

The other reason that I don't see Down Syndrome when I look at you, my Millie Pearl, is that Down Syndrome is something that you have, but it is not who you are. You are our daughter, Mildred Pearl, and we love you with a love that is unlike anything we have known before. Many people have told us how lucky you are to have parents like us, and how, "God could not have picked more perfect parents" for you, but I think they're wrong. We know we're the lucky ones. And we are so grateful for all of the things you are already teaching us about love, faith, and joy. Keep teaching us, our pure little soul, and help us to be more like you. 

All our love,

Your Mommy & Daddy

    

Stitch Fix

I follow this wonderful blog, Carrotsformichaelmas , and every so often she posts a review of a shopping service she uses, called Stitch Fix. I read through every post eagerly, looking at the cute styles sent to her by her personal Stitch Fix stylist, and laughing at her husband's comical commentary on each item. However, when I initially looked into Stich Fix, I was out of the size range because they don't carry plus sizes (though I think I read on the site somewhere that they haven't ruled it out forever) so I just followed "Carrots" and coveted her Stich Fix experiences. And then, something magical happened... She mentioned in her latest post that Stitch Fix is now carrying maternity. Ohmyglob. Sweet baby Jesus loves me.
Here are the basics of how it works:

• You go to their website, and create an account, complete with a style profile of your style preferences, color or material preferences, etc. the more info you can give them, the better your chance of being happy with what they send you (so I hear)
• You pay a $20 styling fee to have a box of 5 items sent to you
• A Stitch Fix stylist selects items for your fix based on the information you give them (have a Pinterest style board, etc... Send that to them too!)
• A box of wonderful goodness arrives, including a personal note from your stylist!
• Each item is new, you can try it on in the convenience of your own home, with your other clothes to match outfits etc.
• If you like any of the items and want to purchase them, the $20 styling fee counts as credit toward your purchase. If you do not like any of the items, you're out the $20 fee. IF you like all 5 items and want to purchase, they offer an additional 25% off your total.

I'm sort of on the prowl for a dress for Easter/my shower, so I asked Husby about it and he thought I should go for it. (He is the MOST generous to me!) There was still the concern about sizing, however I have found that, in general, in recent shopping for maternity clothes, I am into a regular size XL, and no longer in the plus size range (pregnancy sickness for the win!). I was unsure about whether it was boutique style sizing (typically running freakishly small, can I get an Amen???), but decided maternity clothes should be a little more forgiving so I took the plunge!

My box arrived today, just as I was headed out the door with Alex to go hang out with him at his work. And, because I couldn't wait, and neither could he, I tried on all the clothes at his work. (He sits at the front desk of a dorm at his university, and it's spring break. So... Crickets!) so please excuse the plain white wall background, and the fact that I had to try on tops with the skirt I was wearing. Here we go!

Item #1- Kerri Maternity Dress ($148)
My stylist sent this sweet note about wanting to send me a dress for my shower, and apologizing for it being out of my requested price point she also offered to order a dress within my price point for my next fix if necessary.

 

I didn't hate it, but I also didn't love it. The back is a drop V neck, which is pretty, but in general I hate wearing black in the spring and summer because it's not one of my colors, and I just feel like I'm trying to hide.

Alex's take: "I like it a lot. It's very flattering. I mean, it's not my favorite of all time, but it's nice."

At $148 though... I think I'll pass.

Item #2- Clarkston Cowl Neck Maternity Top ($48)

 

I love this color. Coral is one of my favorites to wear. I was a little worried about how clingy the fabric would be, but for later in pregnancy it's fine. The cowl is kind of pretty...

Alex gave me a blank stare when I asked him what he thought... And not the good kind. Lol. Then he said he was just trying to process the color. He thought the "neck was kinda weird, but nice."

It isn't too bad price-wise, but I'm not sure if the soft jersey would hold up through washing to wear into future (God willing) pregnancies...will it pill?

Item #3 - Vinnie Open Crochet Detail Cardigan ($58)

My stylist mentioned in her note that she saw a chunky open cardigan on my Pinterest board (which I shared in my profile) so she included this sweater because it was similar. 

It's a very nice sweater, though it feels more like it runs a size small and just works because it's supposed to fit more loosely than it does (added to that impression is the rounded "butt cover" bottom in the back).

I still kind of want to get it because it's such a nice cozy sweater... And the back detailing is very pretty:

Alex's take: "That would be nice for winter"

Oh yeah, that's right. It's Southern California and already 90 degrees. Waaaa.

Item #4 - Kaitland Spade Charm Long Necklace ($36) & Item #5 - Melanie Graphic Print Maternity Blouse ($58)

I love the necklace- it is heavy enough to be a more quality piece of jewelry, but not so that it will hurt my neck (I have issues with an old car accident injury)


I also love the top. I love the colors, and the visual interest of the squared neck, and I love tops with more structure/heavier fabrics like this one (polyester, but really soft) because they don't cling to every sin (as they say). However, it is a little tight in the arms, and it doesn't give me much room for the bump to grow... And I hear it's really going to grow ;)

Alex made a face, and then drew a square on his own chest to match the squared collar on this shirt while he said "I don't like that." He also didn't like the pattern, or the color... I think?

So what are your thoughts? Which items do you think I should or should not keep? Right now, I think I am only sold on the necklace for sure (and I may as well put my styling fee towards it instead of losing the $20 since I do like it a lot).

Help me choose!

Also, if you are interested in trying Stitch Fix for yourself, please use my referral link so that I can get credit toward future Fixes (I promise I'll blog about them)

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Hump Day Bump Day updates- 30 weeks

Happy Feast of the Annunciation!

It also happens to be the 30 week marker for Sweet Baby O - so there is that. 

Two weeks ago, when we hit 28 weeks (I know, math is hard), I couldn't believe we were suddenly in the third trimester! That's mostly because who the hell knows when each trimester begins and ends?? But according to all my pregnancy app notifications we were finally into the 3rd tri...thank God for technology- how were women ever pregnant without knowing what size fruit or vegetable their baby measured up to each week?

I will say that I mostly feel pregnant now. And 80% of the sideways "pregnant or just chubby?" glances have stopped. To help people out, I tend to rub my belly like a mad woman. Non-verbal communication #forthewin !  We had our monthly appt at 28 weeks, this time with a midwife because our OB was on vaca (in Fiji! Waaaaaaaa!), and Alex and I realized how spoiled we are by our OB. Ultrasounds every time to check her heartbeat and "just see how she's doing". Totally spoiled. I know. The midwife did not spoil us however: she just listened for Baby's heartbeat with a Doppler- honestly the most glorious sound in the entire world- and measured my belly.

Now, I have lived my entire life in this body...shocking, I know. But when you live in your body for 29 years, you learn a thing or two about how your body is made (or proportioned, for instance). Por ejemplo, regular one piece swimsuits are a nightmare because my torso is long. Typically even long torso suits are a crap shoot as to whether or not they will fit, or I'll look something like Jane Fonda in her high-cut spandex (hellllllooooo 80's!). Anyway, back to my story, when the midwife took her measuring tape and did a double take- I felt somehow vindicated. "WOAH! You have a seriously long torso!" She announced. "Really?" I asked, because somehow all the years of not being able to stand upright in trying on too short swimsuits didn't seem to validate this fact as much as a professional torso-measurer aka midwife. "Yeah, one of the longest I've seen!" Great, freak of nature, yet again. 

 Anyway, what it made me realize is that, aside from being a chubby preggo (which has its perks as well, let me tell you), perhaps my bump is on the smaller side, because my torso is so long, and Sweet Baby O is like chillin in a King Sized "bed" in there instead of having to fight my internal organs for living space. At any rate, when she started REALLY growing (babies double in weight between 26-30 weeks or something) my bump started popping. And people started telling me "you are starting to really look pregnant!" Thank God, I can stop rubbing my belly like I'm Buddha in public. 

Also, we had a follow up ultrasound last week to check on Baby's kidneys (they are still watching the size of her kidneys... I believe they were initially measuring large, but don't quote me), her weight, and amniotic fluid levels (perhaps because of potential kidney problems? Idk, I'm not a DR). The tech was wonderful, I told her we hadn't been able to see Baby or get any good images because she had been stubborn, so she printed us a bajillion. Okay, like 15, but enough that I felt kinda rediculous walking out of the exam room with this big long string of ultrasound pics. I finally got to see her face! Her little nose, and lips, and chin...sucking on amniotic fluid (yum!). And the highlight... Which you already know if you follow me on Instagram... She was playing with her toes! AMAZING. 

and now, picture overload. You're welcome. 

28 weeks, versus...

30 weeks

Fin. 

Genetic Counseling, High Risk OB, results, and more! (part 2)

(I know the story is long, so I split it into 2 parts-- though if you're anything like me, you'll want to read to the end of the story anyway :)

Enter High Risk OB, stage right

The first words he said (apart from introducing himself) were music to our ears: "I'm pretty straight-forward. You're going to know everything I know today, I'll tell you what I see when I see it." Thank God we wouldn't have to wait for a report! 

The second thing he said was almost better: "I have looked at the radiologist's report and the original images, and I don't see what he thinks he saw, but we'll take a look and see if we see anything of concern." I breathed the biggest sigh of relief.

He explained that he would look at the heart, and kidneys, and measure baby's femurs (a common indicator for Down Syndrome, I guess). I let him know, much to my Husby's chagrin, that we were waiting to discover the sex of the baby until birth. He joked with us about not worrying, we wouldn't be able to decifer what was what in the ultrasound without him telling us. 

We got to see everything he saw. It was glorious. He explained everything he was looking at. He showed us the baby's femur, and I looked at the screen....

Femur, baby butt, femur... Hmmmm... I'm no expert (I thought to myself), but I know  the difference between a penis and a vagina. And I FOR SURE do not see any boy parts! I think we're having a girl! I kept it to myself because, after all, I'm not an OB, and I could totally have been confused about what I saw- there was still a chance at being surprised!

The OB told us that femurs measured normal, and what they thought was a Cardiac Foci in the heart, was actually just a muscle that was lighting up brightly, and that all the chambers of the heart looked normal, and the muscles were shaped the way they were supposed to be. The kidneys were measuring right on the outer range of normal, but he felt that it was not an indication of any defect and it would self-correct. He said baby looked  good and healthy and there was no indication to him of anything high risk and we should have an easy and uncomplicated delivery (please baby Jesus!) 

He then proceeded to try to take some quick pictures for us, and little peanut still would not cooperate. He printed them anyway, along with a report of all the measurements he had taken of the organs, etc. It was Greek to me, so I handed it to Alex to hold while I wiped the ultrasound goo off my belly. 

I saw his face light up. 

He silently turned the paper I had just handed him toward me and pointed to the upper right hand corner. 

"Sex: FEMALE"

All my pregnancy hopes for a gender reveal after labor were dashed in that instant. It was official, not just my guess of what I saw on an ultrasound. Alex was jumping out of his seat with excitement, and all I wanted to do was cry over my loss of a major part of my birth plan. 

But really, that lasted about 2 minutes. 

Also, my favorite part about this story is that Alex tried to console me after we left the office while he is practically jumping for joy with excitement (he REALLY wanted to know what we were having, and REALLY was hoping for a girl). He suggested that we could just not tell anyone else what we were having if it would make me feel better. Hahaha. I laughed and said, "yeah, how long were you able to keep the secret from me? Not even a second!" Oh well. I think it's God's little gift to Alex, and I'm okay with that. 

Baby is healthy!

Baby is a SHE!

Glory to God!

Thank you all for your prayers. 

Yes, we have a name picked. No, I'm not going to share what it is. SOMETHING has to be revealed after birth! ;)