Wednesday, February 27, 2013

To Hold You Dear

Last year I joined the Instagram craze and was instantly addicted. I love photography, I love finding new ideas for things, and I love connecting with other moms.

One of the moms I've grown to love is Kelsey Koslowski ...I love her photos, her beautiful family, her writing and most of all her passion for the Lord.

Kelsey began creating custom dolls a few months ago, and I was honored to be selected as one of five bloggers to debut her dolls. Kelsey worked with me every step of the way to produce this amazing keepsake for Lily...a look-alike doll that is beautifully crafted to resemble her in every way possible. I was able to choose the color of her hair, her outfit, and her almond shaped eyes. Kelsey even added moccasins and Lily's trademark loopy buns...and stitched "Lily" on the bottom of her shoe.

When I opened the box our doll was delivered in and unwrapped her, I almost cried. This is a doll Lily will treasure for years, and I was so touched that so much love went into crafting her.




And the icing on the cake was that Lily adores her as well !




Kelsey's Etsy shop, To Hold You Dear, already has so many orders for these fabulous dolls that she is backed up for months, but we wanted to give Lily's readers a chance to get on her waiting list. Please read below to find out how you can do so... please mention that Lily sent you when you contact Kelsey at
kelseykoslowski@gmail.com





*******************************


From To Hold You Dear:

Because of the large number of interested buyers, I am currently not accepting new orders but I am placing interested buyers on a waiting list. If you are interested in a doll please email me and I will be happy to add you to my waiting list! Thank you all so much for the overwhelming support! I am excited to make each and every one of your dolls!

A lovely, made to order doll, is certain to be a wonderful playmate for that special little one in your life. The doll you order will be similar to the one in the photos, but you will choose ALL the details that will make your doll perfect. I am able to make a girl OR boy doll for your little one, so princess or pirate, I can fill your order!

Your doll will be made of high quality, yarn she has no small parts making her safe for children to play with. Her face is embroidered and her clothing and accessories are not removable. She is approximately 15 inches tall. She has rooted hair and her quality construction and the attention to detail when creating her, means she will be a wonderful companion for years to come.

Because each doll is handmade by me, and because I will communicate closely with you and try to accommodate your requests to make you the perfect doll, I ask that you please allow two weeks for processing and then the appropriate amount of time for shipping. It is possible to have a doll rush ordered but you would need to discuss this with me and there would be a rush order charge.

When you are ready to order your doll, please send me a message specifying the following details for your doll. I have noted several color and accessory suggestions for each category but if you have a different thought in mind please include that in your order and I will do my very best to make that happen for you!

DOLL DETAILS:

GENDER

SKIN TONE: cream, light brown, dark brown, black

HAIR COLOR: red, light yellow, mustard yellow, light brown, dark brown, black, red, orange, pink, purple, blue, gray, white

HAIR STYLE: high pigtails, low pigtails, low pigtail braids, high pigtail braids, low ponytail, high ponytail, single braid, loose

HAIR LENGTH: short (only available if you keep her hair loose), medium, long

CLOTHING OPTIONS: My standard outfit for a girl is a party dress with sash, and for a boy would be a tshirt and pants. However, these are just the basics, I am willing to customize your outfit so when you place your order describe what you would like for your doll to wear and once your order is placed we can email back and forth about what exactly the outfit will look like. I cannot promise to be able to create EVERYTHING but I will always try my very best to make the outfit you would like!

SHOE: If you would like a short name (3 or 4 letters in length) or initials, embroidered on the sole of your dolls foot, please include that in your message as well.





Happy Thursday !!

Venting...a novel by Patti Rice

** warning: this post has absolutely nothing to do with Lily, Down syndrome, or anything lovely. It's just me venting. Thankyouverymuch. ***



It's going to be a great day, I can tell. When it starts off like this, things can only get better.

I was scheduled to have my glucose test this morning...the one they have you do every pregnancy to check for high blood sugar (gestational diabetes). I asked my OB if I could somehow escape this dreaded test, as I know I have LOW blood sugar, not high blood sugar. I had it last pregnancy and I have all the signs this time as well...if I don't eat every few hours I get light headed, dizzy, shaky, tunnel vision, I start cussing, etc. It's a lot of fun. After many episodes in stores or the library where I have almost passed out and had to borrow cheese and crackers from someone...a library clerk, a stranger, etc, I have learned to always have a Fiber One bar in my purse with me at all times.

Anyhow, my OB said I absolutely had to have this test, and I scheduled it for this morning at seven a.m. I had to fast for twelve hours before..which was already not easy because of what I just described.

On typical mornings I open my eyes, and there is Caleb standing by my bedside with a cup of tea. I'm not kidding. I have trained him well. I stumble downstairs and shovel Special K in my mouth before my brain is fully engaged. This is my daily pregnancy routine, and it shall continue to be my daily morning routine until I die or Jesus comes back, world without end, amen.

SO not eating after seven last night was bad enough (I forgot and ate at eight)... knowing I couldn't have my morning tea or beloved Special K was even worse...but add to that the anxiety of having my blood taken for three consecutive hours this morning on an empty stomach, and you have a very restless night. I kept waking up to check the clock and make sure I hadn't overslept...Sam took our van in to the shop yesterday, so Mackenzie was taking me to the hospital today on her way to work. I was worried I would oversleep and either make her late or miss my ride altogether...and my stupid stomach decided to act up all night as well...I think it was protesting the bottle of thick syrupy orange flavored liquid sugar I would have to down in five minutes or less once I arrived at the lab this morning. (WHO INVENTS THESE TESTS ANYWAY?!?!)

Sam's alarm woke me up at five. I breathed a sigh of relief,  knowing I had plenty of time to get ready before Mackenzie and I had to leave at 6:30...and I promptly fell asleep until 6:15. When I woke up and asked Sam (who was just getting up) what time it was, I jumped out of bed, realizing I had fifteen minutes to get out the door. In my twenties this would not have been a problem..at 44 and 362 days, this was a nightmare. It takes fifteen minutes just to get my hair to stop looking like something out of a horror movie (think Elvira on crack) let alone my face. I looked in the mirror, swallowed my pride and decided I wouldn't see anyone I knew at the lab anyway (hopefully)... and forced my unruly mass of bedhead into a ponytail.

Fifteen minutes later a sleepy Caleb (moral support - hey, he was jobless this morning!) and I climbed into Mackenzie's car.

"Do you have my Cliff Bar for afterwards?" I asked Caleb in a panicked voice. Maybe because I was. Panicked that is. "Check." he replied. "Water bottle??" I barked. "In my jacket pocket," he dutifully answered.

Side note - every mom should have a Caleb. When pregnancy and motherhood depletes all your brain cells, you need a Caleb to fill in the gaps. Did you ever watch M.A.S.H growing up ? Caleb is my Radar. If you don't know what I'm talking about, google it.


Kenzie dropped us off at the hospital, where the lab is located - in the basement, where all torture chambers are located, of course. It's been there for the fifteen years we've lived here. So Caleb and I headed confidently to the torture chamber, my stomach churning and my teeth gritted, ready to face Nurse Nancy and her dreaded needles.

Have I mentioned how much I hate needles? Let me push a seven pound baby out of a place nothing weighing that much should come out of ANY day...but do not show me a needle. The mere sight of them causes waves of nausea to course through me while gallons of sweat drip profusely from my brow.


I hate needles.



The kind gentleman at the front desk asked us where we were going as we were confidently whizzing by... I muttered "the torture cha - umm... lab" and he held up his hand. "They moved it," he apologized. "Are you kidding me?" I asked him. Maybe my voice sounded a bit desperate. After all, I was just deprived of my morning tea and beloved Special K. "Oh, it's not far," he smiled, then glanced at my protruding belly. "Well, not too far," he mumbled, and pointed across the street to a brick building.


Poor Caleb was the subject of my tirade against needles, doctors, thick disgusting syrupy orange flavored liquid, and all of humanity, as we lugged ourselves across the street and into the new and improved torture chamber/lab.

"WHO THINKS UP THESE TESTS ANYWAY???!" I whispered hideously. Have you ever heard a hideous whisper ? Listen to the pale faced guard in the torture chamber from Princess Bride and you'll get a clue. It's not a pretty sound.


*Side note...we don't have a tv. But you might think that we do from reading this post. I watched a lot of tv growing up. Obviously.

I swear my legs weighed a hundred pounds each as I forced myself to the registration desk.

"I'm here for my glucose test," I whispered pathetically. (Not to be confused with hideously. Those kind of whispers are reserved for friends and family.)


"Orders ?" the stone faced man behind the window barked at me.


"I...order you...to give me a glucose test?" I whimpered.


Okay, I didn't whimper that. But I wanted to.


"What orders ?" I asked.


"Orders. From your doctor. We have to have them or we can't do lab work."


"The lady on the phone told me you had my orders," I said.


Stone Face turned to rifle half-heartedly through a stack of papers.


"What's your name?" he spat over his shoulder. Clearly he loves his job.


"Patti Rice," I yelped back. I wasn't in a barking mood...yet. But his lack of compassion for pregnant mothers about to undergo torture treatments was irking me.


"Nothing here," he said over his shoulder. "Sorry."


And then he just stared at me.


"What does that mean?" I asked him.


"It means you need to go to your doctor and get your orders," said Stone Face.


"They don't open til eight," said a very large nurse from behind the window, licking her sticky fingers and continuing to munch on an equally large donut.


"Whatcha got there?" smiled Stone Face at Nurse Nancy, suddenly looking more like Marshmallow Man.


"A yummy donut from the cafe...the last one," grinned Nurse Nancy, and polished off her last sticky bite.


"Excuse me," I interrupted, "but I'm confused. Do I have to...reschedule ? Or...??"  Mackenzie was at work by now, and Sam was on his way out of town to a meeting. My tummy was rumbling, and the smell of donuts was wafting through the air.


"Apparently," Stone Face glared at me. (Marshmallow Man was nowhere to be seen now.) "Call your doctor today and get some orders and we'll see you when you reschedule."


"I'm SO GLAD I fasted for this!" I barked, and threw my book on the counter as I frantically dialed my son Josiah. Suddenly I didn't care what Stone Face or Nurse Nancy thought. Or anyone in that stupid torture chamber.


"Get me the President of this hospital STAT!" I barked into my cell phone.


Okay, not really.


"Josiah ??" I cried into the phone. "Can you come pick me up from the hospital?" Poor Josiah had just woken up and he said he would be there in five minutes.


A nice nurse from the back of the torture chamber came out to apologize and told me we could reschedule for tomorrow morning. She said this kind of thing happens all the time with doctors - they forget to give their patients their lab orders and they have to reschedule. She wrote me down for seven a.m. tomorrow and assured me they would poke me gently.


Josiah picked us up, and I breathed a sigh of relief, knowing my Special K and English Breakfast tea were waiting for me at home, just minutes away.


And suddenly my Venting Novel has become so long that I don't have time to tell you about the rest of my crappy morning...the one where I bent over to pick up a crushed ball point pen in the driveway after Josiah drove off...and promptly covered my hands and only pair of maternity jeans that fit with dark blue ink...and how someone locked the garage door when they left this morning, and Caleb and I didn't have a house key...and how I stood drooling at the front door and ringing the doorbell for ten minutes, praying one of my older kids would wake up and hear it while ball point pen ink dried quickly on my hands and jeans... and a coughing fit triggered by the cold Oregon morning triggered another episode of weak-bladdered-pregnant-woman-syndrome.


So here I sit at the computer, typing away, wearing a fresh pair of maternity yoga pants, an empty cereal bowl on one side of the keyboard, and my second cup of tea steaming beautifully on the other. My jeans are soaking in the washing machine with oxyclean, and The Rice Ranch is just now coming to life.






And it just gets better from here.









Tuesday, February 26, 2013

real life

Saturday night I wrote a post that was a little bit difficult to write. Actually it wasn't difficult at all- because the words were flowing out of my brain almost faster than my fingers could type. What was difficult was hitting publish. Because I don't like sounding like I'm complaining or venting when there are so many people who have it harder than I do in life. And I also don't want anyone coming here to read about life with special needs to form their opinion based on one post.

But really, that's what all of life is about, isn't it? Ups and downs, hills and valleys...not every day is a bed of roses. And that's okay. Writing about our struggles and gaining feedback from other moms going through the same things can be extremely therapeutic - and beneficial for others as well...it helps to know we're not alone. And it doesn't mean we're any less real as bloggers when we focus on the good, because that is therapy in itself as well - choosing to aim our lens on the beautiful and ignoring the mundane or the painful, and in the process maybe we gain perspective ourselves.





So I guess you could say this is an easy post for me to write. Funny pictures from a sunny afternoon... and if this were the only post you read on A Perfect Lily, you might get the idea that life with Down syndrome is a stroll in the park.



 No struggles recorded here, no tears or fears...





...Daddy is ticked that I'm posting this picture. He says he looks horrible, but I can't resist - I mean, just look at that little pixie grinning and saying "cheese' in the background. Plus, I think he looks fabulous in blue. I don't care if he has a chunk of tuna cheese melt in his cheek...he's sexy.

(See why we have ten-going-on-eleven kids?)

 



And some might say- so which is the real picture ? The posts that depict the struggles and sometimes very real heartache involved in raising kids with special needs ? Or the ones that are all rainbows and unicorns, where we proudly proclaim that "everyone should know the blessing of Down syndrome."


Abigail was sick. And grumpy. But look at Lily with that chubby leg slung over her other one, and the grin on her face.
CUTEST THING EVER.



Here's a revelation.... both are.

Just like the photos above - the mundane mixed with the adorable, the frowns mixed with the grins - so are our lives. So is my life. 





I remember some very wise words one of my best friends spoke into my life the night after Lily was born. I was very much in need of perspective that night, and my friend told me words I'll never forget. I was telling her about my fears for Lily's future, and in the middle of that long night, the list was endless.

My sweet friend told me that as a mother of a child with special needs she had indeed shed many tears over the years. And the same held true with her other daughters. And just as with her other children, there were moments of laughter and intense struggles and joy and fear and beauty.

It's called parenting.

We cannot escape the broad range of emotions and experiences that accompany that title of mother, once we've decided to take on this job. It comes with the territory, and we can't avoid those ups and downs no matter how hard we try.








This is life as a mom. Messy, changing, difficult, sometimes painful... but also rewarding, hilarious, joy-filled, and most of all blessed.



 


And you know what? I wouldn't change a thing. I'll take the mountains with the valleys, and I'll try hard to learn from both. 

It may not be a perfect life...but it's our life :)



 




1The Lord is my shepherd;
    I have everything I need.
He lets me rest in fields of green grass
    and leads me to quiet pools of fresh water.
He gives me new strength.
He guides me in the right paths,
    as he has promised.
Even if I go through the deepest darkness,
    I will not be afraid, Lord,
    for you are with me.
Your shepherd's rod and staff protect me.
You prepare a banquet for me,
    where all my enemies can see me;
you welcome me as an honored guest
    and fill my cup to the brim.
I know that your goodness and love will be with me all my life;
    and your house will be my home as long as I live.

Psalms 23


Saturday, February 23, 2013

stopping the bus

Dearest Lily,


It's Saturday night and we just returned from a wonderful marriage retreat. I had no intentions of blogging tonight- I don't have any new pictures of you to share, except a few random cell phone ones from the past few days.




For the past two years blogging has been more of a way to advocate for Down syndrome, rather than process my emotions. When I began this blog, the latter was the norm...I wasn't writing for anybody but for me, and most of my posts were letters to you. Things changed over time, as I got past the processing stage. In fact just a few days ago I wrote about the gift of special needs, and how I am very much at home here in "Holland." And I meant it.


But tonight I'm writing to you again...



Because out of nowhere, it hit.



The comparison bus.



And I didn't see it coming, which is probably why it hurt so much.



I'll backtrack for a moment...we came home earlier this evening after being gone for a few days. After hugging all of the kids and spending some time with them, I brought you upstairs to our bathroom. I took your diaper off and sat you on the potty. I didn't devote much time to potty training yesterday and today (because of the marriage retreat) so I didn't anticipate success. But to my surprise, your diaper was completely dry - and you had been in it for five hours. Two of those hours were spent in the car, and you'd had quite a bit to drink. I told you what a big girl you were for staying dry, and you beamed up at me with your million watt smile- and promptly filled your little dinosaur potty up with five hours worth of pee. I could not believe you did that in less than a minute, and that you knew what you were doing- you clapped for yourself and pointed to the toilet paper and said "please" as clear as could be. I put brand new big girl chonies on you (with birds on them, for my Lilybird) and called Daddy in for a potty party. I was elated- my little girl was far exceeding what my original expectations were, and I was so high on that feeling.


I took you downstairs to help you show all the kids your new chonies and tell them about your big girl accomplishment. Everybody cheered for you and high-fived you, and all the while I was thinking- take that, Down syndrome. Our kids are more alike than different, and look what happens when you expect instead of accept - you kick the typical Ds expectations to the curb.




I left all of you in the living room and went into the kitchen to open the mail from the past few days. There were four envelopes from the Down syndrome clinic in Portland, where you spent half a day a few weeks ago being evaluated. I opened each envelope, fully knowing what each one would tell me...after all, much of the information they gathered came from my own description of what you can and can't do. We took you to be evaluated so that we can have a record of how you're developing over the years, and we get excellent feedback from the team there on how we can better help you to achieve our goals. So I knew what to expect....


But out of nowhere that hideous bus hit me full force.


Auditory Comprehension.. 

Standard Score - 64 
Percentile Rank - 1
Test Age Equivalent - 1 year 9 months

Expressive Communication..

Standard Score - 74
Percentile Rank - 4
Test Age Equivalent - 1 year, 11 months

Total Language Score...

Standard Score  - 66
Percentile Rank  - 1
Test Age - 1 year, 9 months

Impressions:
Based on formal and informal observations, medical record review, caregiver report, and clinical assessment, Lily presents with mixed receptive-expressive language disorder and a phonological disorder.


I already knew this. I already knew you were not talking like a typical three year old, that compared to typical children your age, you are severely delayed. We have children your age and younger at church who I see on a regular basis - who are talking in full sentences, communicating wonderfully, stringing words together...our own grandson is a year and a half old and has a vocabulary twenty times what you do.


I knew this.


So I have no idea why seeing that data on paper hit me like a ton of bricks, but it did. Daddy came in the room and asked what I was reading- suddenly I couldn't see the words on the paper, couldn't get the words out of my mouth to tell him what I was reading. "What is it?!" he asked, his voice tender and full of concern.


"I knew this," I choked out. "I don't know why it's affecting me like this. I know she has Down syndrome - I know she has these delays."  


My hands were shaking as I read the other reports, detailing your other delays...Visual Motor Integration, age equivalent 15 months....Grasping, age equivalent 7 months...


My three year old is grasping like a 7 month old.


My beautiful, bright, charming little girl is an infant.


You didn't somehow defy your diagnosis, you didn't prove all the statistics wrong and exceed everybody's wildest imaginations, you are doing exactly what any other child with Down syndrome your age is doing.... you have profound delays.



They didn't tell me anything I didn't know. I live with this every day, I know you better than anyone else.


So don't ask me why seeing that information printed out on a piece of paper hit me like it did, but it did.


I hope nobody tries to tell me to "accept Lily for who she is", because I have. Or to "celebrate what she is doing", because I am. Or to know that "God made her who she is", because I absolutely believe that with all my heart. I love you more than anybody else does, and I treasure you as one of my greatest gifts. You are everything to me- everything.


And that's why this hurts so much.


I don't want my little girl to struggle. What mother would? I want the best for you, just like all of my children. I don't look at you any differently, and think "well that's okay that she can't tell me that she is afraid of the dark right now, or that her throat hurts right now- after all she has Down syndrome." I want so much more for you.



And this is where I go back to the beginning, back to that place where I sort through the mountain of emotions pressing in on me, threatening to overwhelm me...



...and I stop the bus.





Deliberately, immediately, stop the downward spiral of pain that will inevitably continue without a conscious effort to end it.


Because you know what I've found, dearest Lily? It's just an illusion. That dark phantom, barreling down the highway of my mind, ready to knock me off guard again, sending me careening wildly to the place of grief I thought I recovered from long ago? It's just a mirage. It has no more hold over me than I will let it, and with the flick of a little switch in my brain called will, combined with a sucker punch of faith - it's gone.



I wrote those words in June of 2011. And they're just as true today.


These emotions, this downward spiral, does not have to own me. Those envelopes, those honest and accurate assessments of what you are doing right now, did not change who you are. Maybe they spelled it out in black and white for me, and maybe they made things a little bit more real because they were someone else's observations and not just mine.

But you are still Lily, and Down syndrome doesn't define you. You have strengths that can't be measured by a set of standards in a book, you have value that is so far beyond what anyone could record by checks and percentages.

So what if you grasp like a 7 month old at age three? We observe that, we look for ways to teach you how to grasp things better, we find things to work on to increase your finger strength, and we roll with it. I'm not going to see these comparisons as anything other than a framework for how we can help you better, and at the end of the day you are loved, and you know you are loved, and if I have to hold your hand to draw a circle when you're fifty-five, what will it matter?






You're Lily.


You're not a "typical" three year old, may never be a "typical" anything.


You're my Lily.

And right now, my spunky little girl is chattering on your sissy's cell phone in the other room, laughing hysterically with that imaginary friend you just called, and you are loving life.






And in a year or two, or maybe even three or four, you'll tell me when you're afraid of the dark, or that your throat hurts, and I bet you'll even get that pincer grasp down too. But even if you don't, I'm going to stop that freaking bus every time it tries to hit me.



Because in the end, you are happy and you are loved and you are my Lily, and I don't want to miss one single beautiful moment of who you are today by grasping at who I hope you become.




Finally brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:8







Loving my perfect Lily,

Mama oxoxo

Thursday, February 21, 2013

potty diaries continued

Thank you for ALL of your potty training advice the other day...if you missed that post, be sure to read the comment section there- lots of wisdom there for mamas of kiddos with special needs !!

We're making progress....




...and we also have mixed emotions about this process...



The plan has been to keep Lily confined to the kitchen area all day (avoiding accidents on the carpet) and give her loooots of liquids and salty snacks, thus encouraging lots of potty trips. We bought a hideous looking pink and purple dinosaur potty to help us with the process, and we do a potty dance when she makes it to the potty. All the kids gather around her and clap and cheer wildly for this event...we may break out party hats and confetti to rev things up if needed.

Meanwhile, Lily is becoming proficient at singing along with Rachel Coleman in the buff, to keep her happy in the kitchen. (Lily...not Rachel.)






It might be hard to catch, but she is getting tons of these signs right - elevator and fright !! stand out. (You can see her thrust her little arms out and gasp for "fright").

Here's another one, and you might notice her signing hug and kiss in this one :)





Lots to do today...Winners of the caption contest announced this weekend:)

Tuesday, February 19, 2013

the gift of special needs

It's hard to believe, but in just two weeks I'll be entering my third trimester of pregnancy. Although those first three months seemed to last an eternity, thanks to the most intense morning sickness I've experienced to date, this second leg of pregnancy has flown by.

Today I went to my OB for my regular monthly check-up and saw a familiar face in the waiting room. This woman has known our family for years, and she's seen Lily many times. She asked me how my pregnancy was going, and I smiled and told her it's going great. She asked specifically about this baby- if everything looked good, ultrasounds, etc. I replied the same - everything looks great.

That's the third time this week I've been asked about my baby's health. And each time the questions are asked, I see the concern etched on the faces of friends or acquaintances. Although I am sure there is absolutely no malice or judgment behind their inquiry, the unspoken question remains lingering in the air between us.... "do you know if this baby has Down syndrome?"




I completely understand their concern. I'll be forty-five when I deliver, and my odds of having a baby with chromosomal "problems" are greater than they've ever been. I'm sure people who love us don't want us to be overwhelmed...there's no denying that an extra chromosome carries with it a greater risk for health problems than a typical baby would have. I also think that people on the other side of Down syndrome - from the outside looking in - have no idea what an incredible blessing we've been given in Lily. They might have a glimpse of that truth by reading about our lives here, or seeing pictures of Lily...but it's like describing a wonderful vacation to a far-off country to someone who's never been there. Words and pictures just don't do it justice sometimes.

I think that's why the poem Welcome to Holland meant so much to me in the first days after Lily's arrival. I felt as if I'd been dropped in a foreign land, and I was having trouble finding my way around. I didn't know if I would ever feel at home there, and most of all I felt... alone.




I've heard it said the one of the most difficult things people experience after moving to a different country is the feeling of culture shock...Wikipedia describes this as the personal disorientation a person may feel when experiencing an unfamiliar way of life due to immigration or a visit to a new country, or to a move between social environments, also a simple travel to another type of life.


Culture shock is a perfect description of those first few weeks...months...following Lily's birth and diagnosis. I was suddenly immersed in a new culture, one where new medical terms and procedures and conditions were thrown at me on a weekly basis, and if I had let myself, I could have drowned in the fear of what the future might hold. It seemed seasoned travelers had the language down as well - IFSPs, IEPs, OT, PT, SLP - but it was all Greek to me.


I struggled some days to see my baby instead of a syndrome. I searched her features daily for familiarity, and although she bore such a strong resemblance to her siblings in so many ways, there were still the unmistakable signs of Down syndrome etched in her tiny palm, and shining back at me from her almond shaped eyes. I didn't think there would ever come a day when I would "forget" Lily had Down syndrome. I tried hard to remember that a diagnosis didn't define her, but in those first months of discovering who Lily was, the two seemed hopelessly intertwined.



But there's a glorious transformation that takes place as you settle into a new way of life. Again, Wikipedia nailed my experience of culture shock with its description of the different phases commonly experienced therein: Honeymoon, Negotiation, Adjustment, and Mastery.

There were so many elements involved in that transformation from disorientation to "mastery" for me...from one side of grief to the other, if you will...but if I were to help a newcomer to Holland, there would be three things I would be sure to mention :



* Trust the Travel Agent

It wasn't an accident that you ended up in this place. Although you won't find it in scripture, I truly believe that quote at the top of my blog: "Our children arrived exactly as they were designed. There was no mistake here. They are a direct and unmistakable gift from God."


For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom is no variableness, neither shadow of turning. James 1:17

Before I formed you in the womb I knew you; and before you came forth out of the womb I sanctified you. Jeremiah 1:5

For you created my inmost being; you knit me together in my mother's womb. Psalms 139:13






* Seek out fellow travelers

There is a whole community of people who have walked this way before you. Whether you find that network of friends in a local support group, within your church, or in multiple online resources such as Not AloneDown Syndrome Pregnancy, IDSC for Life, the Down syndrome boards on babycenter.com, or by following the hundreds of special needs blogs available online  - make a connection. The friendships I've made in the past three years are beyond value to me, and without them I'm not sure I would be where I am today.




* Look beyond your own surroundings...broaden your horizons

One of the key turning points for me as far as coming to terms with Lily's diagnosis, was recognizing that there was true suffering in the world, and having a child with special needs did not come close to what others were experiencing. God used Lily to open my eyes to children in the world with Down syndrome, who are discarded in orphanages and mental institutions, simply because they arrived in life with one too may chromosomes. These children aren't worried about classroom inclusion, or which vitamin supplement is most beneficial for brain development, or being called "retarded" on the playground. These children aren't even given a shot at life. I'm not downplaying the fact that raising a child with special needs can be difficult...but in comparison to these abandoned children, my grief, my suffering, is minimal.

Investing myself in the rescue of orphans through raising awareness, fundraising, and crying out to God on their behalf was a pivotal point in my acceptance of life with special needs. Had I not been given Lily I might never have known of their plight.



So have I completely mastered this journey called Special Needs ? I'm sure I haven't. I'm sure there are bends in the road I haven't seen yet, cities within Holland I haven't yet discovered. But I do know that I'm at home here now, and I wouldn't trade this experience for any other if you paid me.

From this side of things, I am above all a blessed, blessed mama, and I am grateful - yes, grateful - for the gift of special needs.




Monday, February 18, 2013

pouting, pregnancy, and potty training, OH MY

I forgot I was going to do another caption contest over the weekend. Chalk it up to pregnancy brain.


 Here it is...






Leave a caption in the comment section to be entered to win...winner gets their child and/or blog featured on A Perfect Lily.

Here was a winner from last week who was able to send me a photo a little later than the others. That's okay, because I think this little lovely deserves a spotlight all by herself....






...this is Nora. Isn't she adorable ?? I met her mama, Kelly, on Instagram. Some day we ARE going to get our girls together :)


Next order of business, Baby Number Eleven. I've had a request to display my baby bump here, so I pieced together a little collage of the growing Ricelet for your viewing pleasure. On one condition : no fat jokes. I'm fully aware that I'm expanding in all areas, and anyone who tells me I'm "all baby" is a great liar and also a wonderful friend. (hint hint).

Behold, the bump.







And finally, a request for help on two issues.

The first is potty training.

I've done this nine times successfully, and some kids took longer than others...One of mine, (who incidentally also delivered himself when he was born...just popped out under the covers with no help from me) also potty trained himself. Just took off his diaper when he was 22 months old, got himself up on the toilet, and has been peeing and pooping like a champ every since. Others had to be bribed, coerced, etc. to get the process down by age three.

The one lesson I learned over the course of 24 years of potty training is this: don't do it until they're ready. I don't care what they do in China, or how many books tell you it can be done in two days, if your child ain't ready, they ain't ready. You can talk to your doctor about this if you don't believe me. I talked to mine about one of my children, because they had a bed-wetting problem for years. I mean years.

Here is a piece of what I'm talking about...

A hormone called vasopressin, which is produced by the pituitary gland, reduces urine production by the kidneys. An increased amount of this hormone is normally secreted during the night, cutting the rate of urine production in half. 

So in some kids, this gland decides it doesn't want to mature right away, like with other kids. It takes it's sweet time releasing that magical hormone, and no amount of limiting drinks at bedtime or bribing a child to stay dry so they can get stickers on a chart is going to speed things up if this is the problem.

Soooo...I am asking mamas of children with Down syndrome to tell me their thoughts on potty training. Specifically the ones who have older children...when did you do it? How successful were you? And most importantly - am I wasting my time trying this with Lily at age three?






Lately Lily has been showing extreme interest in the potty process. She takes her diaper off regularly, she puts on her siblings' underwear (as demonstrated above), she wants me to put her on the potty and pretend to wipe and flush, etc. And she yells POOOOOOOP when she is about to...do so. The other day she was turning red and screaming that awesome word at the top of her lungs, so I rushed her over to the toilet. It took five minutes of hugging me, while she groaned, sweat, yelled OWWWIE POOOOPOOO (sorry TMI), but eventually the cow pie sized bomb was dropped, and a potty party was thrown in Lily's honor. She promptly ran down the hall to tell her brothers, and led them back to the golden throne, where she proudly pointed to its contents and clapped her hands in glee.

Today she's been in chonies all day, and aside from soaking through them at nap time (she fell asleep before I could switch to a diaper) she has stayed dry.

So Ds mamas ... your advice? I am not, NOT, NOT a fan of being mommy-trained. I refuse to run my child to the potty every twenty minutes for the next 6 months, or stop the car on road trips every half an hour to tell my child to go. That is not potty training, in my humble opinion, that is mommy training. When my other nine were ready to be potty trained it took about a week of on and off accidents, but THEY told ME when they had to go by the end of the week. And that is potty trained. Your child is aware that they have to go potty, they are aware they went potty, and they are able to tell you they have to go.

Since Lily is still just learning to talk, is this an effort in futility ?? She can sign potty, and she tells me ALL the time when she has pooped- comes up to me and signs "change me".

And really, with Down syndrome, I don't know how much she understands. I don't know if she is even able to make the connection that she is peeing, you know?

So maybe trial and error is (unfortunately) the only way to find this out with her?

I would love to hear from you about your experience with potty training your child with special needs. I don't want to frustrate Lily, and I don't want to set my expectations too high, but I also don't want to underestimate her.


One more area of help needed....we're taking our family to Disneyland in two weeks. Seven of us have birthdays next month, so in lieu of gifts, we're going to the happiest place on earth. (Thank you, Sammy, for earning a huge bonus in the month of January by working your butt off so that we can do this. You're my hero.)





Since this trip was planned last minute, I am frantically scouring Craigslist and Ebay for Disney princess costumes for Lily...she is a size 18 month - 24 month. I'm having a hard time finding costumes that small...if any of my readers have one you would like to SELL me (not looking for gifts!!!) I would more than happy to buy your used costume and pay for shipping as well.





Those are the ones I'm looking for, but if you had Snow White or Mary Poppins or Sleeping Beauty, those would be great as well.


Okay, lots I covered here...don't forget the caption contest, and if you have any potty training advice related to Down syndrome, please leave a comment or email me.

Peace out !!

Saturday, February 16, 2013

the gift of motherhood

 It's Saturday afternoon, and I have umpteen million things calling for my attention. Not the least of which is a post-Valentine's banquet at our church tonight to cook for...we decorated last night with lights and banners and streamers and centerpieces, and I am just a wee bit excited for the event. I overheard Mackenzie telling my daughter-in-love that "my mom gets into party planning" as we were preparing the church sanctuary. She's right. I love making special occasions happen, especially for the people I love the most.


 But I also love the little, seemingly obscure moments that fill our days, because if life was just one big holiday, I don't think I'd enjoy it as much, you know? Every day can't be Disneyland. We'd get tired of it, and probably wouldn't appreciate it as much. I've heard this fluctuation between the ordinary and the extraordinary called a  lot of things...ying and yang, ebb and flow, etc... I think the ancient scribe nailed when he said "to every thing there is a season..."



 A season to celebrate and turn up the excitement level and yes, party plan...and a season to just relax and revel in the small things. And while sorting through pictures of the week just now, and smiling at the sweet little moments that were sandwiched in between the big ones, I realized again what a blessed mama I am.

Lily, pre-speech therapy



she's rockin' it big time. so proud of my girl


as always, she practices on her babies afterwards...and writes notes on their progress to give to their mama

 When I was little I watched Sesame Street a lot. There was a little segment once where a beautiful African-American mama was bathing her equally beautiful bronze baby in a galvanized tub. She had a little sponge that was oozing with baby bubbles, and she lovingly stroked her baby's shoulders and back as she sang a lullaby to him. He smiled up at her with water streaming down his chubby face, and she leaned over and kissed the top of his curly head. Even as a little girl I felt that instinctive mama-urge...the one that kind of squeezes your heart when you see that kind of unconditional love shared between a mother and her baby, and you want it for yourself. I couldn't wait for the day to have my own little chubby baby, to give baths to, and sing to, and swaddle in a soft baby towel...





 I'm living out my childhood dreams. I truly am.

 I had other dreams when I was younger...I wanted to be a teacher, an artist, a writer...

And it dawned on me today while I was sifting through photos and soaking it all up...I get to be all of those things too. Somehow God took all those desires, wrapped them all up in a beautiful package called motherhood, and gave it to me as a gift.

And every day I have the privilege of opening up that package again and again.



The contents may be different each day...silly antics or crazy laughing or intimate heart-to-heart discussions with my children...or just the simple, peaceful pleasure of bath-times in the sink.

They're mine to unwrap and enjoy and treasure, and nothing could replace the joy and fulfillment I feel because of this gift I've been given.


holding her baby up to say "cheese"




I'm a blessed woman. We may not have a mansion or drive the nicest car or dine at the finest restaurants. But we are the richest people on earth because of the blessings we've been given that are beyond measure.






An excerpt from my favorite book...



"Fancy you being contented there," smiled Christine. "Do you really never feel thatyou want a broader life? You used to be quite ambitious, if Iremember aright. Didn't you write some rather clever littlethings when you were at Redmond? A bit fantastic and whimsical,of course, but still . . ."

"I wrote them for the people who still believe in fairyland.There is a surprising lot of them, you know, and they like to getnews from that country."

"And you've quite given it up?"

"Not altogether . . . but I'm writing living epistles now,"said Anne.
~ Anne of Ingleside, L.M. Montgomery









Happy, happy weekend.