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!
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.


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..


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.


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." ?


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


Elissa said...

Amazing post Patti. I thought these very thoughts when I read all of those comments that you are referring to from that article. I dare them to take one look at Abbie and then look me in the eye and tell me she shouldn't be here. It hurts my heart so much to know people feel this way. Can I link this post up or copy it to my blog? It is so well said(as always).

JC said...

I cant even tell you how much I loved this! I have read it through many times...
I loved how you described this journey as "strengthening your core" That sums it up beautifuly, thats what I feel I am doing with Russell too, but I never found the right words to describe it before...and you're so right, the best thing we can do to change people's ignorant misconceptions on Down syndrome is educate...and we do that by talking about our kids and talking about Ds...By focusing on Down syndrome we can help change the world for our children!!
Loved this post!!

Patti said...

Elissa- just bedfore I fell asleep last night I thought- I never emailed Elissa back!! Things have been so busy around here, I hope you understand. I thought that was so sweet about your mom, and I am going to make sure to go catch up on your new blog today! Thank you for you kind words:)

Jenny- thanks for inspiring this post;) Your post triggered that Mama bear instinct, and my thoughts have been brewing for days
on this subject.

Wish we lived closer to get Abbie and Russell and Lily together!

Janet said...

That was FABULOUS !!!! Thank you ! You GO girl! I'm right behind you! I want to send it around the world and back again. Love you Patti.

Melissa said...

Great post!! And I LOVE the picture of Lily sitting. :)

Ashley said...

Way to go, Lily! <3 Laura will be sitting up soon I'm sure :) Lily is so beautiful.
I read those comments on Jenny's blog and they made me so sad and mad.

Mrs. K said...

My Dear Patti, you are absolutely right...these people are people of ignorance. We must pray for them. Luke tells us in 6:27 Stop judging and you will not be judged. Stop condemning and you will not be condemned. Who are they to judge who should live and who should die? God does not make junk nor mistakes. We are ALL made for a purpose, God's purpose and who are we to question His Divine reasoning. ARGH!! Must we turn the other cheek, we must be patient as Jesus was when He was in front of Pilate. We must say "Father forgive them because they do not know (ignorant)" Even these ignorant people were created for a purpose....only God knows.

Tara said...

Well, this post is a tear-jerker and should come with a warning! :) Sniff, sniff. You go, mama bear!

Han Solo said...

Luke tells us, "My name is Luke Skywalker, I'm here to rescue you!"

...for those others, there will be no rescue. It is not safe for you, it is not too late, should we choose to terminate.

Ashley said...

I felt the need to comment again because I just fully read through this entry. I was doing something earlier so I just kinda skimmed through it and looked at the pics :) But now I had time to fully read it. Such a beaitfil post. You have such a way with words. You should be a writer :) I can not believe that someone would say that kids like Laura, Lily, Russel, Abbie and all the over beautiful indiviuals with DS do not deserve to live. I just can't believe it. I would never ever trade Laura for ANYTHING else! If God told me that if I wanted to trade her for Laura without Down Syndrome I would refuse. The only reason I wouldn't want her to have Down Syndrome is beause of the possible health issues that comes with it. Otherwise, she is P.E.R.F.E.C.T! to me :) And so is Lily! It is our job to be their advocates so I will continue to in any way that I can! I love you and Lily <3

Anne said...

God obviously has a plan and a purpose for these little ones - I know I have learned many lessons in the last few months from my beautiful girl. Core training is a great way to think of it - sign me up!

Race Bannon said...

Han Solo, you are tooooo funny!

...anywho, I can't believe Lily's hair! Elli is bald. B A L D. But it really looks like a short version of Lily's, so if you cover up the face, those pics could be Elli. If Elli stopped eating for the next month. Not that she's fat. She's just big skinned. Her doctor commented that her fat folds were not symmetrical, which funny enough was an indication of hip displasia. I wasn't there, but if I were, I would have covered Elli's ears, looked at the doctor and said, "we're gonna pretend we didn't hear that..."

I'd rather go to veterinarian anyway, doctors are a bunch of lackeys and yes-men. I'll take a vet over an M.D. any day. They gotta be able to cure a lizard, a chicken, a pig, a frog...all on the same day. (Seinfeld)

patsy said...

patti..what a beautiful post. you had tears streaming down my face. i feel i have been very blessed to have been sent so many wonderful, positive blogs that have shown me since the day maggie was born how wonderful life with a child with ds can be...and i know about the negativity that some people in our world still have about our sweet babies, but i feel sorry for them. they are the ones with the disability...anyone who thinks they should get to determine life. what life is worthy and what life is not. GOD does not make mistakes, and i know i feel so blessed that HE picked us to go on this journey.

CameoLeigh said...

What a beautiful post in response to such a sad article. I had to read it several times to really let what they were talking about. Don't people realize that we are ALL different? So if they "get rid of" Ds, what's next depression? or how about curly hair, we all hate curly hair? It just doesn't make any sense and so disheartening. Thanks for the great words. Lily and all the other beauties that I read about, deserve the entire world!!