Tuesday, September 28, 2010

Strengthening our Core

Dearest Lily,

Hello baby girl!!

We've been so busy homeschooling lately, that my letters to you have been few and far between. But my days are still filled with YOU, even if my writing isn't:)

Karen came last week, and we assessed where you are at, and how far you've come. She does this every six months (she started coming to do therapy when you were 2 months old) to document your progress. And you HAVE come so far, Lily Anne!
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A lot of the therapy we do with you has to do with strengthening your core...the muscles in your abdomen, back and neck. As you gain strength in these muscles, you are better able to support yourself sitting up, and to begin crawling. Because babies with ds tend to have lower muscle tone, or hypotonia, it is important to "help" these muscles develop through exercise.



This involves lots of different activities...placing you on top of the exercise ball on your tummy and rolling the ball backwards and forward, side to side...this encourages you to use your arms to balance and support yourself, and it forces you to react to the movement by using your muscles. We also roll you onto your back on the ball and roll the ball in different directions. Sometimes we roll the ball towards us, and wait for you to "pop up" off the ball- a movement that requires (and encourages) good core strength.

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We have watched you improve so much over the past 6 months- from barely being able to lift your head up off the floor, or hold your upper torso off the floor with your arms...to completely
supporting your upper body with your arms and turning your head sideways to watch people behind you while you are on the floor or ball.

You are sitting now, as well! Mama took some pictures of you on her phone last week, at a hotel we were staying at..

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I am so proud of my Lilybird!! You get so excited when you're sitting and we're all clapping for you. Some of your siblings just began to sit unsupported when they were 7-8 months...I am so amazed that you are doing so much given your diagnosis.

And all of this therapy has gotten me thinking about my need for core strength.

I've never considered myself a very "strong" person. I sometimes have trouble confronting people, even when they've done me wrong. I never like to step on people's toes, and I sometimes worry too much about what people think about me. I worry too much about offending people.


So maybe part of why God gave me you, dearest Lily, is to help strengthen my "core". To give me a little backbone and force me to verbally make a stand when it is needed.

This week on another Mama's blog, I read about an ugly discussion that took place on a forum online about Down syndrome. People were debating whether or not babies like you should be terminated during pregnancy.

Here are some quotes from that......discussion...

"It is strange and selfish to bring a child into this world knowing they are doomed for a life with such a condition, that they will never live a full independent healthy life."

"You have a right to keep a Downs baby, go ahead, more power to you, I have the same right to terminate it."

"The bottom line is Down syndrome children are a burden to society"


"Only a deeply destructive society dumps all its resources into a population that, frankly, isn't going to show a return on the investment."


" Its bizarre to me to see statements that these children enrich their parents lives or bring joy, luckily we all get to choose."

"I would not want a baby like that"

So Lily, what's a mama to do when she reads something like that? I don't know who these people are, who would post comments online about babies, children, adults with Down syndrome. I've never met someone in person who has voiced these opinions before. Well, perhaps I have met them- but I've never had someone say these things to my face.

So what's a mama to do??

I'll tell you what your mama is going to do.

Strengthen my core.

I'm going to take every single opportunity I have in this one precious life I've been granted, to educate, to inform, to advocate, to bring awareness to the FACT that people with Down syndrome DESERVE LIFE, every bit as much as the small minded, ignorant, foolish and bigoted people who would leave those kinds of comments do.

And while I'm praying for them- because a change of heart from God Himself is about the only thing that will bring people like that to the truth- I'm socking away a list, an arsenal if you will, of replies to those foolish souls.

And it goes something like this.

Dear People of Ignorance,

You may wonder why I address you as such- People of Ignorance- rather than Ignorant People. It's called People First language, and since you are such pursuers of the truth, with such a burden for the improvement of "society", let me help you become enlightened. People are people FIRST and in this modern age, we address them this way.

Our children are not "Down syndrome children" - they are children who have Down syndrome. They are not Downs babies- they are babies with Down syndrome. Whereas YOU...are truly ...an ignorant person. However, in the spirit of enlightenment, I will refer to you as "People of Ignorance."

I'm curious about your insistance that babies like my Lily are unfit for society, are a burden, and that they are better off being terminated...a sterile term for killed...in-utero.

Where would you have "society" draw the line? Should it be drawn along the lines of intellect? Physical strength or beauty? Should we decide who lives based on appearance only? Blond hair, blue eyes, or brunettes only pass the test? Or should mental capacity be the standard? Just how impaired could someone be and still make it out of the womb alive? Perhaps we can develop some sort of prenatal screening that tests this sort of thing. And just how many chromosomes are permissible in this perfect society you are trying to establish? If autism were screenable, would those babies be deemed unacceptable as well? How about babies with club feet, missing limbs, a cleft palate? Shall we include these as well?

And what would you have us do with those unfortunate babies who do make it out of the womb alive? Those who somehow missed their appointments with death, slipped through all the prenatal screenings, took their mommies by surprise? Should we go back to the days of placing them in institutions? Or perhaps we could ship them to impoverished European nations, where even today this is the standard practice? Perhaps then we could get past this "deeply destructive society" stigma that is so plaguing us around the world.

Dear People of Ignorance...

How dare you judge.

How dare you put yourself in the place of God and decide who is fit or unfit for life.

How dare you state that it is bizarre that I would say my Lily brings me joy, enriches my life.

What a shallow, unenriched life you must lead, that you would not be able to look past appearances, see the beauty, the sweetness, the RICHNESS of a life lived with Down syndrome. I pity you for your impoverished, shriveled soul. What joy you are missing.

I pity you.


I see your ignorance- and I'll raise you one Lily.



One sweet and perfect Lily, who will make this world a better place, ignorant people notwithstanding.

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You see, Lily, God knew about my weakness. And He knew about my Mama's heart too. He knew that when those two met, the Mama bear in me would win out every time, hands down.

There is a time to be gracious, a time to speak the truth softly.

But when it comes to defending "one of these little ones", I am a Mama with a Mission, and God help the narrow-minded person who ever voices those ugly words of hate and cruelty to me.

I will speak the truth in love, dearest Lily, but I will speak it boldly and with confidence, that you are a blessing and not a burden.


I wonder, was it for children like you, sweet Lily, that Jesus said:


"Beware that you don't look down on any of these little ones. For I tell you that in heaven their angels are always in the presence of my heavenly Father." ?

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So tonight as I tuck you into bed, and breathe in your sweetness, and kiss your baby-soft cheeks, I will pray for those who would do you harm, darling Lily. And I will resolve to strengthen my core, and to defend those little ones who share your magical extra chromosome.



Sweet dreams, baby girl.



Love always,



Mama oxox

Wednesday, September 22, 2010

Lily Videos

Dear Lils,

We are going out of town for a few days...I know a lot of your friends out in bloggy land will be missing "seeing" you here for those few days. SO I thought I'd give them a Lilybird fix and post a few videos:) What do you think about that? I agree, I'll post 'em...




Here you are with Karen, your therapist...you LOVE Karen!! So do we!!
(Poor Abbi and Noah fell asleep during your therapy...we have been getting up early for home schooling!)




We're so proud of you, Lily!!

Love always,

Mama oxox

Monday, September 20, 2010

Sweet Dreams

Dearest Lily,

Hello, little princess! It is late Monday night, and you are tucked in your co-sleeper, dreaming away. You are such a good sleeper...You might wake once or twice to nurse briefly each night- but if you do, you go right back to sleep. More often you sleep until Daddy's alarm goes off. You seem to have an internal alarm that goes off right before his does. You wake me with your little fussing noises, and as we nurse I hear Daddy's noisy phone alarm.

You know what is so sweet about our night time nursing trysts, Lily? I don't even mind waking up for them. When you were a newborn, and sooo sleepy, I used to have to wake you up to nurse. We were so concerned about getting you to gain weight. I couldn't believe I finally had a baby who would sleep through the night from birth- and I had to wake her up! But I wanted you to do this on your own- to wake up and have that desire to nurse and not have to be coerced into it...so now, 8 months later, I am overjoyed at how far you've come.

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Night time feedings are the times I feel closest to you. I love feeling your tiny form snuggled up against me..you burrow into me and stretch one arm up to squeeze my hair or touch my lips. You sigh and nestle into my side as close as you can..I stroke your downy soft hair and whisper how much I love you, baby girl, and sometimes I breathe a prayer of thankfulness that you were able to learn to nurse.

I use that little triumph of ours as a reference point now. When I wonder about hurdles we will need to overcome in the future, I remind myself that with time and perseverance we hurdled the feeding issues of your early days. We pushed it through, you and I- we worked together at our little duet and it was worth all the late nights I spent crying and praying over you. Daddy used to encourage me, faithfully, "She'll get it, babe- just give her time." He had confidence in his little girl...he knew you were a fighter.

It hardly seems possible that you've only been in our lives for 8 months. My days are so consumed with loving you and soaking up your deliciousness every moment, that it's hard to believe you haven't always been here.


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Thinking about how much I love you has reminded me of something...

One of Mama's favorite books in the world is Jane Eyre. And one of my favorite parts in that classic love story is when Mr. Rochester tenderly describes his feelings for the novel's heroine, Jane. Up until this point in the book, the young nanny, Jane, has wondered if her feelings for her master are mutual..but she fears he is going to marry a wealthy older socialite, and she is heartbroken.

I'm going to read this book to you some day, Lily. But for now, I will tell you of that passage that is so moving and meaningful to me...

It takes place in a garden on a midsummer evening..Jane has just voiced her fears to Mr.Rochester. She is afraid that she will have to leave her position as nanny for Mr.Rochester's young ward, Adele, should he marry the conniving Blanche Ingram. Mr.Rochester takes Jane's hand in his and looking down upon it says,

I sometimes have a queer feeling with regard to you--especially when you are near me, as now: it is as if I had a string somewhere under my left ribs, tightly and inextricably knotted to a similar string situated in the corresponding quarter of your little frame. And if that boisterous channel, and two hundred miles or so of land come broad between us, I am afraid that cord of communion will be snapt; and then I've a nervous notion I should take to bleeding inwardly.

And that, my dear Lily, is exactly how I feel about you. We're connected, intricately and completely, and my heart is so filled with love for you that I don't know what I'd do without you. Sometimes that can even make me a little scared. I worry sometimes about your health and your future- I read too much about things associated with your diagnosis, things I have to just stop thinking about it, or I will never be able to enjoy right now. So many of your little friends whom we have met through the fabulous world of blogging, have intense health issues that they have gone through or are going through. Heart surgeries and thyroid issues...respiratory problems and hearing problems...blood disorders..leukemia...It's too much for one little Mommy to take, Lily. I can only handle today's worries- I have to leave the future to God.

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I am putting our lives in His hands, just like I did when a year ago the doctors told me you might have a heart defect..and kidney problems..and Down syndrome. I can't control the future through worrying anyway- it's better left in God's hands than mine.

I remember when you were just a week old, and I was really grieving the loss of my dream for you, and who you would be. One of the silly little things I grieved about was the thought that you might never read Mama's favorite novels- like Jane Eyre. And now 8 months later, I cannot imagine being more in love with a baby than I am with you. And even if you can't read those novels some day- though I hope you will- we will read them together, you and Mama. And I will take your tiny hand in mine, your sweet, soft little hand with the adorable crooked little pinky...and tell you how inextricably bound to you I am, my princess, my angel, my sweet and perfect Lily.

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Sweet Dreams, baby girl.

Always yours,

Mama oxox

Thursday, September 16, 2010

Eight months of love

Dearest Lily,

Having you has opened our lives up to so many wonderful people. People we never would have had the chance to meet had you been born without that magical extra chromosome.

People like Ashley, who is your big sissy Mackenzie's age. Ashley has a blog for her baby sister Laura, and we met through blogging. You and Laura are going to meet each other some day soon!! Ashley put together a video with your picture in it, and many other pictures of babies we know. She sent it to Mommy today, and I couldn't stop crying watching it. I am so proud of Ashley, and so honored to know her.



We have so many "friends" in this video, Lily. I think that's what made me cry so hard. Each one of them is so beautiful...Abbie and Grady and Nella and Ella and Sutter and Addison and Verity and Grace and Ragen and Claire and Josie...and of course Laura. Every one of these children has touched our hearts with their stories and lives. Their families have been a lifeline to me...I am SO proud to be one of "those families".

If I could go back in time and talk to myself...give "Patti" a little speech on how her life was about to change with your birth...I would show her this video. I'd say, "Look at these faces...don't you wish you had a baby like one of these? Don't you want to be a part of this special club? "

Once upon a time I thought I couldn't handle having a baby with Down syndrome. Once upon a time I thought special needs were scary.

Eight months ago you proved otherwise.

You know what, Lily? Who really cares about how quickly you can reach every milestone? Who really cares if you can read novels some day? Who really cares if you can drive a car or live independently some day? I mean- I'm going to shoot for the moon, baby. I'm going to help you reach every goal you can, chase every dream and do anything you want to. But at the end of the day, I just want you to know you're loved. I just want to spend my life loving you and being loved by you. You're my baby sent from Heaven, little girl.

Thank you for eight of the BEST months of my life, dearest Lily.

Love always and forever,

Mama oxox

Wednesday, September 15, 2010

Not So Wordless Wednesday

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I read a ton of blogs about families with children with ds...it's my favorite addiction next to Starbucks Irish Breakfast Tea. So this morning, while sipping said tea, I read this beautiful post. I could relate to so much of what Wren was saying...I didn't go through all the emotions of anger she did in the first weeks after having Lily (I'm not sure why, I just didn't- everybody "grieves" differently). However, she nailed it when she described her fears about being "that family"....the one with the child with Down syndrome. If you have time, click on the link above. Warning though: you will fall in love with her incredibly gorgeous little guy Sutter!!! I've added him to the list of prospects for Lily to marry some day:)

Monday, September 13, 2010

Sitting pretty

Dearest Lily,

Mama has been so busy home schooling, I have hardly had time to journal here. You are doing SO MUCH lately, it is hard to keep up!

Last week when Karen came, your therapy went so well- you did an amazing job, little girl! Karen was so impressed with how strong you are getting...here are the notes she wrote on your progress report...

Lily was able to push up on her forearms and hold a 4 point position w/ support on her hips.

She did some nice reaching and turned to look over her shoulders.

Lily is now grasping and reaching and mouthing toys!

Lily's sit up is much more organized and she will be sitting soon!

Lily is a champ at rolling.


Karen left a huge exercise ball here for us to practice therapy with you. You LOVE the ball. We roll you on it on your tummy, and it helps improve your arm strength. We turn you over on your back and roll the ball towards us, and you "pop up" into a sitting position all by yourself!

Every day you get a little bit closer to sitting on your own. You have done it a few times for a few seconds...you have the core strength to do it, but you don't quite have the balance thing down yet:) We are working on strengthening your arm muscles so you can support yourself when you do fall forward. Work on the ball helps with this as well- as we roll the ball forward with you lying across it on your tummy, you use your arms to protect and support yourself. We also lay you across our legs and have you support yourself doing "push-ups".

We are so proud of you, Lily..

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You're working so hard, and when you do hit that "sitting milestone" we are going to be so happy, we'll probably throw a party!

Your big sissy Naomi said it best in one of her comments here...

Lily will soar in life and you will be so proud whatever she does because we both know that each milestone is really something so much more.. We sometimes take for granted what babies do and each thing Lily does I want to proclaim it to the world!!! I love her so much... and your family. I am so lucky to be a part of you guys and so lucky to know Lily. She has changed my life.
Love, Naomi

Loving watching you soar,

Mama oxox

Sunday, September 5, 2010

Always your Daddy's girl

Dearest Lily,

Daddy was gone for two weeks training for a new job. Last Friday we went to pick him up from the airport. I couldn't wait to see the two of you together again...you have always been such a Daddy's girl:)
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I dressed you in a pretty new dress and matching headband...you slept the whole way up to Portland. We picked up Daddy and drove to Red Robin for lunch. Photobucket

When Daddy picked you up out of your carseat, you looked sleepily at him like you weren't quite sure where you were..
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He held you close and kissed you, and still you kept examining him and looking all around sleepily...
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He kept saying "Hi, sweetie girl! It's me, Daddy!"

You touched his face and stared at him quizzically..

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Finally your face lit up in recognition! Your eyes crinkled and you grinned your happiest grin- the one where your tongue sticks out as far as it can go:)

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You looked over at me as if to say "What a nice surprise, Mommy! Thanks for bringing Daddy back to me!"
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And as happy as I am to have Daddy home.... I think YOU are even happier:)

Loving my Daddy's girl,

Mama oxox


Saturday, September 4, 2010

Thursday, September 2, 2010

Reading!!!

Dearest Lily,

Today we are going to teach you to read...

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"Uh...read? Like...books?"

Yes, books. Mommy's been thinking a lot about expecting not accepting, so why not shoot for the moon?


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"That's a good one, Mom."


No, I'm serious, Lily. I think we can do this.

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"Uhhhh...okaaaayyyy...."

So here is your first book...

Remember- expect- don't accept...

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"Ha. haha. Um, you're really freakin' me out, Mom."

No, really...just look at how cool this book is..don't you just wanna try? For me?

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"Um...well,it looks a little juvenile for my taste...."


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"But I guess I'll take a peek...."

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That's my girl...just see how you like it...reading is so good for everything- your cognitive development, it improves your vocabulary, it stimulates your brain...

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"Mommy, you are so right- this book is AMAZING!! I just want to DEVOUR IT!!"


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"I love reading! I just can't put this book down!! I'm going to bury my face in a book every day from now on!!"


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We are SO proud of you, Lily!! We knew you could do it !!

Love always,

Mama oxox