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Monthly Archives: February 2012

My Place In This World

When you are in the midst of having a baby you are submerged in it, surrounded by it, you eat breathe and sleep all things baby.  You dream about the little girl inside you and you think about all of the things you are going to do with her, all the pretty clothes you will dress her in.  When you awake from that dream into what you believe is your life’s biggest nightmare at the time, “Your daughter has Down Syndrome and will need open heart surgery.”  This was certainly not the dream, not the hopes, not the wishes that were had and made upon shooting stars in the night sky.  This was happening to someone else, certainly not me, how could it, I am young, I did everything I was supposed to do, I did everything right.  How did this happen to my little girl, how did this happen to me? Then someone sent me something, a beautiful poem.  I read it and at the time didn’t really think much of it, just thought it was some other way that people were trying to make me feel better, people who didn’t understand.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a disabled child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a disabled child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word'”. She will never consider a “step” ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her Patron saint?” asks the angel, his pen poised in mid-air.

God smiles, “A mirror will suffice.”

I read this again today and I cried harder than I have cried in months, I understand it now, I understand my purpose in this world, to be the best mom that I can be to both of my wonderful kids.

I THINK I CAN, I KNOW I CAN

It is hard to believe where we have been and what we have accomplished in the past few months.  My little cookie will be 7 months old next week.  In her 7 short months of life she has overcome more hardships and obstacles than most people do in a lifetime and she has done it all with no complaints and a gummy grin on her little face.  This morning I realized during her weekly physical therapy sessions just how far she has truly come and I could have just burst in to happy tears.  She is doing all of the things I questioned that first night in the hospital after giving birth to her, would she do the things baby’s did?  The answer is a triumphant YES.  She is doing things that other baby’s do and then some, only she is doing them at her own pace, the pace she sees fit for the moment, maybe she will stay at this slow and steady pace, maybe she will speed things up, we may never know, for it is all up to her.  As for now I am at peace and so proud of my baby girl and the progress she is making, can’t wait to see what she will do next.

At Her Own Pace

Babies with Down Syndrome are often signifigantly delayed when it comes to meeting all of those baby milestones.  It is hard as a mom to see other babies around my daughter’s age and not say “oh she/he’s crawling, talking, standing etc.” 
Little Miss will be 7 months old and has just mastered the art of holding her head up while on her belly and rolling over from back to tummy and tummy to back.  She is doing really well for a baby with down syndrome according to the Physical Therapist, but it is still really hard.  I sit and think when will she crawl, when will she stand, when she will walk.  I know that she is doing the best that she can for a little baby who has been through all that she has been through.  She will do all the things that other babies do, just in her own time.  A friend sent me this creed that put it all in perspective for me.

Down Syndrome Creed
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I’m no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace
I think this pretty much says it all.

Able Not Disabled

People with Down Syndrome have their own unique talents and abilities just like everybody else.

I worry a lot lately, I worry about her, I worry about me, I worry about my little family, all the what if’s go streaming through my head while I lay awake at night. I am a worrier, it’s just what I do.  But I look to other people’s success stories and triumphs to get me through the tough times.  I hope that my blog does that for at least 1 person.  Hope everyone had a wonderful day.

More Alike than Different

Children with Down Syndrome are often fully included in social and educational settings and often go onto graduate High School and attend post secondary education programs. Celebrate these achivements on March 21, National Down Syndrome Day.

When I first had my daughter I worried and still worry about so many things, will she be accepted, will other kids be friends with her, will she talk, will she walk, will she learn, will she know things, will she fit in, what kind of person will she be, what kind of relationship will I have with her, will she want to do things that other little girls like to do with their moms.  It helps me so much to see all the stories about kids with Down Syndrome who go on to live wonderful, fullfilling lives.  Won’t you help me spread awareness about Down Syndrome, follow and share my blog.
Visit http://ndss.org/ to learn more about Down Syndrome.

RAISING AWARENESS

World Down Syndrome Day takes place March 21st every year. The date 3/21 represents the 3 copies of chromosome 21, which is unique to people with Down syndrome.

I thought I would use the next month leading up to March 21, 2012 to talk about Down Syndrome and give you all a look inside what this disorder is and the impact it has had on my life and the lives of so many others.
So read my blog and spread the word about Down Syndrome.

* Did you know that 1 in every 691 babies are born with Down Syndrome and 80% of these babies are born to mothers who are under the age of 35.

When I had my daughter I was under the assumption that only women who had babies past 40 had babies with Down Syndrome, I never knew it was even a possiblitly for me. But she certainly proved me wrong and has enlightened me and taught me so much so far.

Help me raise awareness about Down Syndrome and celebrate my daughter and people with Down Syndrome this March 21.

Busy Weekend

So I spent the day out with my son yesterday and met with a friend I have not seen in a while, it was great fun and very much needed. We are also in full baptism planning mode, invitations are made by yours truly and addressed and ready to send.  Dress is purchased, decorations purchased (some, most I am making myself)  I can’t wait for everyone to be able to meet my little princess. Hope everyone had a fabulous weekend, mine was busy just like I like them to be.

Dolce Far Niente

“Dolce far niente” – the sweetness of doing nothing. Eat Pray Love

I like to repeat this to myself, it sounds so much sweeter, so much more intense in Italian than it does in English.  Say it to yourself, go ahead, you know you want to.  Now wait for it, don’t you just feel relaxed, don’t you feel like you should go eat an italian pastry, sip a cappucino while overlooking  Il Po.   Sometimes I like to indulge in this idea of nothingness, this tale of oblivion.  I long for this sweetness, I can smell it’s sugary enticement, I can feel it’s syrupy goodness embracing me, I can hear it’s melodius call, “Dolce far niente.” Can you hear it? 
This kind of idelness does not exist in a field of flowers, in a deep blue sea, or in a forest full of redwoods, it exists within you, and me.   It is taking pleasure in a moment, the present moment, wherever it may be.
What does doing nothing mean?  Do you just lay on the couch, sit in a chair, listen to music, relax???  Although the thought of doing absoulutely nothing for just moments at a time sounds so inviting, I wouldn’t know how to do it.  I don’t know how to do nothing, I don’t know how to relax.  I am always doing something, thinking about something, I cannot just empty my brain and just rest.  So I would love to get in touch with this part of myself, learn to clear my mind, learn to enjoy my own prescence, learn to just be and have that be enough.  I am learning that to do nothing can mean just being with myself in my own prescence, drinking a cup of coffee, tuning out the world for just a few minutes, just a moment each day to listen to what your heart is telling you.
How do you relax, how do you like to experience “Dolce far niente?”

Weight Loss Wednesday!

So weight loss Wednesday was rudely interrupted by Valentine’s Day, I couldn’t back down from the Godiva truffles, I just couldn’t do it.  Although I did not gain any weight this week, I didn’t lose either sadly I stayed the same.  Still haven’t found the umph to exercise, I have been running back and forth to doctors and specialists with my daughter and having to be home for her Early Intervention twice a week, and working with her to get her muscles stronger.  I am just so tired all the time, by the time 9 pm rolls around I am ready for bed.
I know that if I did exercise a lot more I would have more energy and maybe I would not be so tired at night, I know people say I have to make time for myself, but how do I do that when there is so much that has to be done?  Maybe next week I will have better weight loss news.

HAPPY VALENTINE’S DAY

I hated Valentine’s Day when I was a teenager.  I never had a boyfriend, and was often reminded by family members that I would never have a boyfriend unless I lost weight first, but that’s a whole other blog post.  Anyway I remember being in High School and someone making me believe that a boy actually liked me, ME? REALLY? I remember her giving me chocolate and a flower from this said “boy,” and telling me that he was going to ask me out, blah, blah, blah.  Anyway I was always very leary of people and was always waiting for the other shoe to drop because I had been hurt many times before.  Anyway, I started to actually believe it, she was very convincing I must say, she even got other people in on it.  On Valentine’s Day of Freshman year I found out it was a big ol lie, I was crushed, crushed because someone who was supposed to be my friend lied to me and hurt because of course he didn’t like me, boys didn’t like girls like me.
When I was 21 I met my husband and he started doing the most wonderful things for me on Valentine’s Day.  He always makes me feel so loved.  So I guess as a young girl I didn’t know how nice Valentine’s Day could be when you share it with someone you love. As a mom I also love sharing Valentine’s Day with my kid, giving them valentines and extra hugs and kisses.