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
