Wednesday, April 19, 2017

take heart, self

When Lily was a baby I wrote a blogpost called "Enough", detailing a recurring dream I'd had. It was a soul-bearing kind of a post, and in all honesty I've kind of steered away from those over the past few years. 

I'm grateful - yes grateful - for the opportunity to raise two little girls with Down syndrome. So I don't want anything I say here to be misconstrued or misunderstood because I'm honest about their challenges and mine.

But some posts - like this one or this one  or this one- are therapeutic for me. They're not written to solicit pity or praise; they are mainly just a "word of encouragement" to myself: take heart, self. It's going to be alright.  

So today I went back to reread those posts, and even though I'm cringing just a little bit at the thought of writing a similar one.. I'm doing it anyway. 

Because I need a "take heart, self" moment here. And maybe someone out there does as well. 

After Lily was born, and the words "Down syndrome"  became part of the common vernacular in our home, I spent the first year on a roller coaster of emotions. And I would say that the majority of those emotions were good ones…because for the most part, parenting a child with special needs is just like the first year of parenting in general - there were good days and bad days. Days when I felt like I was adjusting to what it meant to be a mom, and days when things felt out of my control.

But the difference between that first year with my first baby, and that first year with Lily, was this : when the dip on the roller coaster of special needs came, it was huge. Like Space Mountain versus the kiddy roller coaster in Toon Town, huge. And it wasn't a dip, it was a plunge. A mind- numbing, shell-shocking, out-of-nowhere plunge into darkness, and it wasn't ever "fun"; it was pure hell. 

I've never liked roller coasters in real life, and I hate them in my emotions even more. 

And almost every time that dreadful plunge came, it was because of comparison. 

You know that saying  – "comparison is the thief of joy"? It becomes incredibly real when you're the parent of a child with special needs. 

Because you don't just compare your child to typical children… you compare them to all the other children with their syndrome. At least for me that has been true . 

So I said all of that to say this : it's been a long, long time since the comparison bus hit. Maybe five years. But when it hits.. and the other day it hit .. it hits hard. And it only takes a moment for the downward spiral to begin. Just one little trigger ... reading about another child with Down syndrome, Lily's age, conveying abstract emotions in concrete terms... and that wicked bus knocks me down.

And the thing that hurts the most is not the fact that she has Down syndrome - but the horrible introspection that comes after the bus hits.

And it goes something like this..

Have I done enough ?

Would my girls be better off if I were doing more?

 Is there something I'm doing wrong?

 Have I failed them somehow?

Am I missing something?

How much of "who they are" is because of their genetic make-up  -- and how much is because of me?

And this is where I have to stop the bus.

Don't get me wrong - there is a place for healthy introspection. There is a time for asking questions and making sure we aren't missing avenues of help for our children. And I'm never opposed to looking for new resources or bouncing ideas off other parents or educators as far as giving my girls the tools they need to learn. 

But then there is the bus.

And when I'm knocked down by the bus, all careful and healthy and honest introspection is replaced by an infinite number of what-ifs.

There is no room for a truthful assessment of "how" my girls are doing, because I'm drowning in the the sea of comparison. 

It doesn't matter what Lily can do - just did today ! - because the comparison bus just robbed me of that joy.

I was thrilled yesterday that she got herself dressed for church, folded her play clothes and put them away, told me "I love you" and tried to write her name. But those proud mom moments - held up in the light of another child's accomplishments - are crushed under the weight of comparison. 

she picked out the entire outfit herself and came downstairs ready to go. "Mama, Lily dressed... ME!"

And here's where my "take heart, self" speech comes in. 

Patti: take heart. 

Stop the bus. 

Pick yourself up. 

Stop the what-ifs. 

Because at the end of the day, what I'm left with is this: God gave me my children - those with special needs and those without - and He also gave them me. 

If my children's futures are completely in my hands ... if everything they are going to be is left up to me, and what I can or can't do for them ... then we are already sunk.

Because truthfully I'm always going to fall short somewhere. Truthfully, there are always going to be things I miss, areas where I could be doing better. 

That's true as a mommy to Lily and Madison, and that's true for my other ten children as well. I didn't suddenly become a perfect mom when my daughters with designer genes were placed in my arms. I wasn't instantly, miraculously infused with the wisdom of the ages – and they didn't come with a blueprint for life either. 

How many times as parents have we wished that all of our children came with special instruction manuals, handwritten by God? But as much as I wish I could be the perfect mommy, always knowing exactly what it is my children need to succeed in life ... at the end of the day who they are left with - is me. 

All of my children have strengths and weaknesses, special needs or not. And no two of them are the same. I have twelve children who excel in different areas - some sing, some don't, some love math, some hate it with a passion, some are bookworms, and some struggle just to read. Some of my children are masters at keeping their rooms clean, and some can hardly remember to make their beds. We have artists in our family, musicians, scholars, inventors, comedians and creative geniuses alike - they all arrived with distinct personalities and passions, hardwired by their Creator... not me. 

And just as I can't take full credit for their strengths, I can't take all the blame for their struggles either. I'm the same mom to all of them, and yet somehow ... they are all unique. 

And so this game - of comparing one child to another - is really like another old saying, you know ? It's like comparing apples to oranges. I place such an unnecessary burden on myself when I expect a different result. If I can't compare Noah or Jackson to other children their age… with the same amount of chromosomes.... why would I do that for Lily and Madison ? If the comparison game is an effort in futility for any of my children ... then it's even more so for my daughters with designer genes. 

I cannot do this job, cannot be their mama, cannot live this way, wondering if I'm enough. 

I have to trust that not only did God give me them, but that He gave them me, and that apparently He believed I was up for this...that I was enough.

I might drop the ball at times, might miss something at times, might not read enough or try enough or ask enough...but I do love my children more than life itself, and at the end of the day I choose to believe that is ...

... enough.

Wednesday, April 5, 2017

celebrating spring

It's April and that means it's one of my favorite times of the year… spring.

Combine this season with my favorite place on earth – the Rice Ranch - and you have the recipe for one very happy Patti.

March is birthday month at the Rice Ranch – eight of us celebrate birthdays, and that is not even counting my mom, and brother, my nieces and nephew, and Sam's brothers. It's a lot of fun, because nothing makes me happier than spending time with my family ... but it also requires a lot of energy – birthday parties and gift giving and celebrating galore makes for one. tired. mama. :)

But March madness is over and April is here... consequently I am consciously making an effort to slow things down and soak up all of the new life around me.

Having grown up in a state where the seasons just all kind of blended in together, I have a deep appreciation for four distinct seasons now. 

In Arizona, warm winters blended into hot springs, which blended into hot-as-hades summers and then faded back into "just hot" falls. The leaves never changed because cacti don't have leaves, snow was some mythological thing we only read about in books, and rain was so rare that we actually stayed inside during school recess when it occurred. "Rainy day recess", it was called… which makes me laugh, thinking about it now. If schools canceled recess because of rain in Oregon, kids would never even know what a swing set is!

Honestly though, I love the rain. I've blogged about it before, but if we go several days without rain, I get ... twitchy. Don't get me wrong, I love blue skies and sunshine and WARMTH, especially come April. But rainy days don't bother me in the least... twenty-three years in brown Arizona gave me an appreciation for what a healthy dose of rain does for the landscape ...

And it always blows my mind (to use my husband's favorite phrase) that trees can be so many colors. Twenty-two years living in Oregon, and spring still takes my breath away.

Sam and the kids and I have been going on long leisurely walks around our neighborhood the past few weeks. While our new neighborhood does not have the designated walking trails that our previous one did, there is still so much to explore here. 

Hayden asks me daily if we can "go on a walk together." He shares his mother's love for the great outdoors- ever since he was old enough to sit up, he has preferred being outside to being indoors.

This girl as well ...

And what is it about eating outside? Is it just me, or does food actually taste better when you eat it outdoors? Everything is yummier, and  tastes (don't laugh) healthier when we dine al Fresca ... even when it's just Dominos pizza ;)

Even Miss Bunny is happier outside...

Just a few more photos from last month, and then I need to go iron clothes for our Wednesday night church service...

Just for fun in the comment section, tell me what spring is like where you live ...

Happy April !!!!

Tuesday, March 21, 2017


Twenty nine years ago we welcomed our first baby into the world... he was born just two weeks after I turned twenty, and when I held him in my arms for the first time, I felt like I was a new person. It's hard to describe that transition ... I just know that one day I was a wife, and the next I was a mother - and from that moment forward I was connected forever to another human being... a part of my heart was now living outside of my body.

It doesn't matter that my baby is 29 today - he will forever be "my baby", and no matter where he is or what he's doing, who I am is wrapped up in who he is... and the same holds true with all of my babies.

I've heard people claim that motherhood doesn't define them, but for me that's a perfect description of who my children are to me. They make me who I am. I can do a lot of things in life - invest myself in hobbies and interests and passions - but there is nothing that has a hold on my heart like my children. I'm so grateful - so, so grateful - for the privilege of giving them life.

If you would have told me twenty nine years ago, that this day - March 21st, World Down Syndrome Day -would one day hold another special place in my heart ... I honestly don't know what my reaction would have been. As a twenty year old first time mommy, whose idea of perfection was the tiny golden haired baby she held tightly in her arms ... I truly don't know that I would have embraced my future with wide open arms. I don't know that I would have understood the genuine joy and honor - the privilege ! - of being entrusted with not just one, but two designer gened little girls.

But Lily changed me. And the transformation was just as drastic, just as eye opening, as the one I experienced when Jason was first placed in my arms. If the birth of my first baby opened my eyes to the miracle of life and forever changed the person that I was, then the birth of my tenth child widened that perspective one hundred fold, and made me into the person I am today.

And Madison was just the icing on the cake.

Today, tens of thousands of families across the world are celebrating the GIFT that their loved ones with Down syndrome are.

We celebrate our loved ones, not in spite of their differences, but because of them. Lily and Madison were uniquely created - there was no mistake here, they arrived in life exactly who they were meant to be. I believe that with all my heart.

Today, more than ever, I am so honored to have been given the gift of raising my girls.

In honor of this day, I've joined with my fellow Ds mama and advocate, Krista Ewert, to help promote a very special book she wrote called This Is Ella. You can read more about Krista's project HERE.

To help celebrate World Down Syndrome Day, Krista is giving away one copy of her fabulous book, This is Ella, to one of Lily's readers here on A Perfect Lily.

This book will be available in November of 2017, and the winner's copy will be mailed to them at that time.

To be entered to win, please visit Krista's This Is Ella, kickstarter page HERE, and then come back saying you did so in the comment section below.

For a bonus entry, please leave a comment telling me how Lily and Madison - or others you know with Down syndrome - have impacted your life.

We are so blessed to celebrate this day with all of you - HAPPY WORLD DOWN SYNDROME DAY !!

Friday, March 10, 2017

everything and nothing from the rice ranch

I needed a title for this post, which is going to be a bit of a smorgasbord of thoughts and photos, so I borrowed one from a dear friend. (Deanna - they say imitation is the sincerest form of flattery, so ... I hope you're flattered.)

Sam has been in China this week, and he will be there until next Wednesday. 

Consequently, we are all staying up too late reading, eating whatever we feel like, staying in our jammies until we absolutely have to leave the house for something, and ditching make-up and hair care for just as long. At least the over-forty and under-two crowd here is...

It's amazing to me how much our typical routines (apparently) revolve around Daddy, or at the very least are influenced by his presence. I have no idea why that is (wouldn't you think I would care a little bit about personal appearance ??) but there you have it. Left to myself, I'm a sloth.

Whatever sense of self esteem I have jettisoned at my husband's departure, however, has been made up for in spades as far as the home improvement department goes. 

Ever since we moved into the house of our dreams almost a year ago, there has been one room that has been a bit of a "sore spot" for me ... and if you saw the gorgeousness God blessed us with this time around, you would probably slap me for even whispering that.

So I hesitate to use the phrase "sore spot" - it really is so trivial in the grand scheme of things - but I am very particular about color in my home.

In fact, if given the choice, I will always choose neutral over color. 

I have the same phobia, if you could call it that, of knick knacks. Or clutter of any kind. I believe this is mainly due to the fact that we have so many PEOPLE living in our home - a dozen of them - as well as our beloved Maltipoo - so to compensate for the abundance of bodies, I have become quite the minimalist over the past few decades. 

My sister-in-law came to visit me years ago, and after a few minutes of visiting, looked around wide-eyed and promptly blurted out: Patti! Where is all your STUFF ?? Because if you knew me when I was in my twenties, STUFF pretty much described my decorating style. If I owned it, it was on display somewhere. Cloth napkins, placemats, greeting cards, the silk flower bouquet from our wedding, salt and pepper shakers, cute matchboxes, ceramic geese, potholders : they were all lined up on stacks of shelves, proudly proclaiming to anyone crossing the threshold of our home - newlyweds live here. 

I was so proud of my stash of STUFF, I don't even think my dishes saw the inside of a cabinet for the first six months of our marriage. In fact, if I remember correctly, Sam and I bought blue and white plastic crates at a garage sale, stacked three by three in our microscopic kitchen, just so I could display my Blue Goose "china" for all the world to see. 

And the crowning glory of the whole look was a row of ... I kid you not ... gift bags from our wedding, nailed to the perimeter of the kitchen walls, sort of like crown molding, only ....not. 

I have no idea what I was thinking, but I do remember vividly the look of astonishment (at the time I mistook it for awe) on a friend's face when she came to a tupperware party I was hosting. 

"WOW. Gift bags, used as border paper ...who'd have thought ?"

I remember feeling so proud - my style, I thought she was implying, was so avant-garde, even a seasoned home-decorator like herself was impressed.

So yes, suffice it to say my taste in kitchen decor has changed over the years, as has my overall decorating style. I don't profess to be any kind of expert, I just know what I like: clean, simple, and clutter-free. For a piece of furniture or knick knack or painting or picture to be displayed in our home, it needs to either serve a purpose, or I have to absolutely love it. I don't want STUFF here, I just want what appeals to me. 

And if something in my home (walls, furniture, bedding, etc.) has color to it, I need to love that color. 

our living room walls and her baby blues - two of my favorite colors in life
other colors that I love - the evening sky in Oregon !

... also vintage reds and tans and blues ... and golden curls as a bonus

if I could just paint my walls to look like this

Which brings me to my "sore spot".

And again, I hesitate to describe it as such, because I am so in love with every single little nook and cranny of the new Rice Ranch, that I feel silly even mentioning it ... but here it is: I am not a fan of green.

I should say that more carefully - I am not a fan of green kitchens.

And maybe I would feel differently about another shade of green ... a happy spring green, or bright and cheerful apple green ... but the particular color the previous tenants had chosen for the kitchen here was decidedly not in that hue. I can say this freely, because I know our landlord didn't care for the shade either - but my brother referenced snot after seeing the color of our kitchen... and he wasn't too far off.

Combine this specific shade of green (and all the other mental images that come with it, including, but not limited to smushed peas, lima beans, and baby poop) with my aversion to colors-in-my-home-that-i-don't-love and you have ... a sore spot. A very sore spot, to be exact.

On top of all this, I would guesstimate that at least sixty percent of my life is spent in the kitchen. And while the beauty of the rest of the kitchen was not lost on me - custom cabinets with fabulous intricate scrollwork, stunning granite countertops and  matching stainless steel appliances, Edison-style hanging lights that I've always longed for - I could not get away from that green.

I actually adore green ...moss green, green firs, grassy greens ... just not booger green. 

So allllll of that to say ... my kitchen got an overhaul this week.


goodbye baby poop - hello white mocha !!!

I do realize that color is entirely a matter of opinion. I've already had two extended family members tell me that they preferred baby poop green over my new white mocha walls  ... and I am fine with that. To each his own, I say!

Also, if any of my readers have kitchen walls resembling my "before'' picture - in other words, ones that would never be compromised should a random toddler decide to wipe his nose on them - more power to ya.

I would never judge a book (or a kitchen) by its color, even if it does bring up vivid memories of the foul tasting lima beans I routinely chewed up and spit out in my napkin, unbeknownst to my parents all those years ago.

I just happen to like white walls.

Moving on to other news ... (because this post is a little bit of everything and nothing) ... I have the sweetest teenagers on the planet. Jon Jon (pictured above) is about to turn nineteen, and he still spends time every day with his younger siblings. I love how much our younger children look forward to the older kids coming home every day - even Madison lights up the moment they come into the room and call her name. 

Jonathan graduated from homeschooling two years ago and has been working several jobs since then. He had to take his GED recently (homeschoolers do not receive diplomas in the state of Oregon) so that he could take a series EKG classes being taught by our second oldest son, Josiah. He just got his results and found out he tested in the top 2% of the nation, at the college plus credit level... he starts classes in the fall at our local community college where he hopes to purse a nursing degree, like our oldest son Jason did. So proud of this boy!

Tyler, age twenty and pictured above with Jon Jon, has been working with Sam for the past year and a half. He is such a charismatic and well mannered young man; my husband is constantly getting calls from clients telling him that very thing. He recently preached at an area youth rally for our fellowship of churches, a sermon called Purpose Driven Youth. Our other children came home telling us what a fantastic job he did ... he and Jon Jon will be "tag-team" preaching for our Sunday night church service since Sam is still in China. Can't wait to see what God has in store for these fine young men!

Caleb turns seventeen this month ... and on top of being my knight-in-shining-armor for transforming my kitchen into a White Mocha Paradise ... he is one of the most talented and well-rounded kids I know. If you've read my blog for any amount of time you know that he is a jack of all trades, and (mom brag moment) master of them ALL. I just helped him put together a 300 word application for Praxis - if you haven't heard if it, watch THIS.  The program fits Caleb to a tee - he is driven, creative, passionate, and one of the hardest workers I know. Whatever the future holds for Caleb, I am confident it's going to be GOOD.

And then there is this beautiful girl. Abigail Joy turned fourteen last September, and she is appropriately named. She has the sweetest demeanor, always looking for ways to help out, always tuning into her younger brothers and sisters, always bringing joy wherever she goes. She has started singing for "special music" at church, as we call it. She has an AMAZING voice, and is learning to play the piano as well. As I type this she is outside with Lily and Hayden, playing on the giant play structure Caleb put together when we moved here a year ago. She is blossoming into a lovely young lady, but she still loves to have fun ... my kinda gal ;)

I will blog more about the younger members of The Rice Ranch in my next post, but this is getting a little photo heavy and I still have more pictures to post!

Continuing on with my theme of randomness for this blogpost, I'm posting pictures of a quick getaway Sam and I took last Friday night to the coast. I turned forty-nine on March 2nd, and we were ending a wonderful week of revival services at our church that night. Sam would be leaving for China on Monday, so we squeezed in this mini vacation in the middle of all the craziness of life... it was only 24 hours but it was SO GOOD.

If you ever visit the Oregon coast, you MUST stay at The Inn at Nye Beach. In twenty-two years of living in Oregon we had never stayed there, but we have vowed to make plans to return, now that we know how incredible it is. The room was divine, - a huge free-standing soaker tub, a gas fireplace, and a balcony overlooking the beach were just a few of the amenities ....

.... but the BEST part was the salt-water infinity jacuzzi for guests to use outside !!

If you have never experienced a salt-water jacuzzi in the rain, while gazing out at the ocean .. words don't do it justice. Sam and I had Mis Bunny with us, and while we were at first skeptical about how she would do in the water - well, just take a look at her face ....

She was in HEAVEN, I tell ya. We stayed in the water for over an hour, and we only got out because check-out time was looming before us. I told God afterwards to please make a note that I need one of these things in the backyard of my mansion in Heaven.... in the mean time, I am counting the days till we can go stay there again !

Just a few more photos and then I need to wrap things up... it is SIXTY TWO DEGREES here in Oregon today, and I promised my little ones we would go for a long walk.

This photo was from just a few days ago. They say if you don't like the weather in Oregon, just wait five minutes ... whoever "they" are, they are right. If nothing else, it keeps life interesting around here!

Okay, sunny skies are calling me, as well as some golden haired babies who can't wait for me to join them outside....