Saturday, June 23, 2007

Come share my joy?

a little montage tribute to some very special angels in our lives. And theres a real nice shot of Ciarra hitting a BIG ball a few nights ago in the playoffs. I hope you will take heart and hope from this. And please make sure you catch what happens AFTER she comes around home plate...when the kids meet her at the dugout door. This video has been a real joy to make, it is emotional and sentimental and just JOYFUL for me. I was so afraid to try letting her move up to pitch baseball. And once again, my precious and beautiful little girl has proved she is in FULL control.

See the guy in the pic with her? His name is Corey. I never knew him till baseball started. He is the dad of a little boy named Devin on the team. NICE little guy, sweet as can be, and a REAL good player. Anyway, Corey was at the early practices, and I was trying to make sure Ciarra was paying attention enough, worrying way too much cause she was fine. He asked me if I felt comfortable with him being the extra pair of hands IF needed for her. Of course, then I could take PICS
I didnt expect him to do it all season. But he and Ciarra took a real liking to each other. He called her his batting buddy, and she was smitten. Wasnt long before Corey was out there whenever she was, coaching her on, with NO ONE asking him to, praising her at every step, reminding her the few times she needed it, and being her own personal coach in a way. They have made this bond that is so cool, when she heads out to the field now she looks to see where Corey is. He gives her just enough space, but is quick to remind her "throw to that base, run to third" etc. She was the Pitcher for a few weeks in the beginning (they trade off) and he stood guard near her in case a line drive came too fast for her to stop. The one time one did, by the way, she stopped it and kept two runs from scoring. He was as proud as *I* was. The games are usually at night, when Jim is still at work. It seems like Corey realized that I wanted to just be mom, but was too worried and trying to make things go smoothly for everyone, and he just stepped in. He is gentle, sweet, and so kind to both of us. He has made this whole thing go like clockwork. He reminds me every game how WELL she is doing, and just takes it for granted that he will be out there if she needs him. It lets me be MOM, and relax a bit. Sometimes you forget just how kind people can be. I feel like Ciarra has an ally in the world now, and I kinda do too. I hope he coaches next year.

Tuesday, June 19, 2007

The least of these video
2 dozen Iraqi boys with special needs were rescued from an orphanage that had left them tied to their beds, unfed, unwashed, untouched. The story is breathtaking in its beauty, even in the horror of it there is so much hope. Jim woke me up this morning telling me about it, his voice was choked with emotion. I searched online until I found it. And then I knew why he couldnt tell the story without crying.

On a daytime patrol in central Baghdad just over than a week ago, a U.S. military advisory team and Iraqi soldiers happened to look over a wall and found something horrific.

"They saw multiple bodies laying on the floor of the facility," Staff Sgt. Mitchell Gibson of the 82nd Airborne Division told CBS News chief foreign correspondent Lara Logan. "They thought they were all dead, so they threw a basketball (to) try and get some attention, and actually one of the kids lifted up their head, tilted it over and just looked and then went back down. And they said, 'oh, they're alive' and so they went into the building."

Inside the building, a government-run orphanage for special needs children, the soldiers found more emaciated little bodies tied to the cribs. They had been kept this way for more than a month, according to the soldiers called in to rescue the 24 boys.

"I saw children that you could see literally every bone in their body that were so skinny, they had no energy to move whatsoever, no expression on their face," Staff Sgt. Michael Beale said.

"The kids were tied up, naked, covered in their own waste — feces — and there were three people that were cooking themselves food, but nothing for the kids," Lt. Stephen Duperre said.

Logan asked: So there were three people cooking their own food?

"They were in the kitchen, yes ma'am," Duperre said.

With all these kids starving around them?

"Yes ma'am," Duperre said.

It didn't stop there. The soldiers found kitchen shelves packed with food and in the stockroom, rows of brand-new clothing still in their plastic wrapping.

Instead of giving it to the boys, the soldiers believe it was being sold to local markets.

The man in charge, the orphanage caretaker, had a well-kept office — a stark contrast to the terrible conditions just outside that room.

"I got extremely angry with the caretaker when I got there," Capt. Benjamin Morales said. "It took every muscle in my body to restrain myself from not going after that guy."

Before the soldiers left the base, he said he had to prepare them for what they were about to see. And most important of all, he had to remind them of their training and discipline, so they did not bring the name of their unit into disrepute by taking out their anger at those responsible for hurting these boys so badly.

Captain Morales knew the rage they were feeling because he felt it himself. But they did the right thing, he assured me, and handed this over to the Iraqi authorities to deal with as they saw fit.

He also told me about one soldier in particular that had been especially good with the children.

"Lieutenant Smith was amazing," he said, as we poured over photographs that showed Jason Smith brushing some of the children's teeth. He really was very good with the children.

When I interviewed Lt. Smith, I found out why: he is trained as a special education teacher. His wife is a special education teacher and her brother is a special needs boy.

So when faced with this terrible situation, Lt. Smith was happy to do the things for these boys that he already does at home for his brother-in-law. This quietly strong and gentle young man knew exactly what these boys needed – a human touch.

And that is what struck me as I watched the soldiers interacting with the boys at the orphanage. They were desperate for that human touch, just a moment of love and attention.

As I was standing there in the crowded room, soldiers and boys and Iraqi social workers all around us, one of the boys came up to me and reached out with both his arms. I leaned over and met his embrace and before I knew it he had lifted his legs off the ground and wrapped them around my waist. As suddenly as he had presented himself before me, he was wrapped in my arms, and I just surrendered. I let him snuggle into my neck, and breathe in the smell of my perfume which he really seemed to like.

As I stood there holding him, watching these boys with various levels of disability, some of their wrists scarred by the marks of the ropes that held them, I was overcome by how forgiving they were. I had the feeling that anyone could have beaten them with one hand, embraced them with the other, and they would have welcomed the embrace.

They must have seen them as non-human to treat them this way: to see them growing weaker and sicker every day and do nothing to help them; to stand by while their lives slipped away into the filth and heat and misery of neglect. They had to be non-human in their eyes, for who would treat a human that badly?

I am just stunned, reading and seeing all of this. As Ciarrasmom, my heart aches. As an American, I am proud of our young men and women over there who put down their guns and came to the aid of the most fragile. As a special needs parent, I am angry, shocked, hurt, and determined. I want to help. HOW can we help? These boys have been moved to another orphanage with better care, for now. But they cannot stay there long. Then what? Who will hold them then? Your suggestions are welcome.

Tuesday, June 12, 2007

Saturday, June 09, 2007

Assorted Poems

I Hear You Have An Angel

I hear you have an angel
a baby boy like mine
and though it's really scary
you will celebrate in time
the things that you believe now
will change and will become
the extra special parts that make
your extra special son.
I just started this same journey
Though I'm ahead of you on the path
there are a few things I've learned,
and I DO know you will laugh.
You see, an extra chromosome
is not what I once thought
it seems to be the one on which
purity is brought.
And though people will say they're sorry
(and some wont know what to say)
I will be here for you
when you're ready,
and I can't wait!
There is a special bond you see,
between families like ours,
a joy found in the living
and a peace that fills our hearts.
Your son is more than just a child,
he's a tiny teacher, too.
And scary as it is right now,
you will soon feel as I do.

My Child My Love My Life
I wish the world could see you as I see you
Wish they knew the joys you've brought to me
So many people quick to judge us
and see you as someone who shouldnt be

They tell me that your life is not worth living
if they were I, they would have never let you live
They cannot know the thing it is that we know
They will never know how much you have to give

They talk a lot of sacrifice and burden
They imagine that your being is our loss
How can they know you saved me when you found me
when I never even knew that I was lost.

True enough, my world has changed forever
nothing in it is as it was so long ago
Your entry in our world has changed so many things
but none so much as they have changed my soul.

Why do we live our lives at all then
if there is some race that we must finish first
Why do we deny ourselves it all then
we drown so that we may quench our thirst

You taught me to stop and smell the tulips
they are different than the roses, this is true
their scent is in my every pore now
I never would have known them without you

To all the many people who would not choose you
who think your life is somehow tragedy
I say you have outlived them and outloved them
I am grateful God chose you just for me

You love your life and everyone thats in it
you shine your light without knowing that you do
Illuminate the darkness with your sparkle
my child, my love, my life, thank God for you.

Danny's Poem
through the long and winding road
over seasons and through the years
you alone, the distance walked
no other sound but your own tears
silent footsteps in the dark
searching for the path to tread
carrying a load no one could match
never begging that the weight be shed
a mother's heart, lion strong
a mothers fears to keep
anger gnawing at your insides
best left buried way down deep
some have walked beside you
their footsteps fell off of the path
and though they sought to comfort you
their devotion could not last
some have walked before you
and though they try to shed some light
no one can ever fully
prepare you for this fight
many will walk behind you
whispering words you cannot heed
that your son is better off
where God can tend his needs
cause love is never selfish
it wants naught but to give
and a mother is not a mother
were she not to will her boy to live.
I cannot walk in front of you
I will not walk behind
but I will walk beside you
through this dark and lonely time
I wont offer words to cheer you
or sympathies or lies
I will simply be here for you
and hope you realise
that in your darkest moments
when your feet cant find the way
your friends here will carry you
and help you get through today.

Ciarra Nichole
She kisses the angels
she touches the skies
God gave her stars
to wear in her eyes.
How could "imperfect"
be used to describe
this child I've been given,
the light of our lives?
She smiles with a sweetness
reserved for so few.
How dare mankind judge her
on what she CAN'T do?
She reaches out a tiny hand
And touches total strangers
as very few can.
Some have made comments
that were truly unkind,
But once they know her,
they leave that behind.
For this is, for sure,
an angel, on earth
God wanted a messenger,
and so He sent her.
If you are given
an angel to hold
You'll see there's no worth
in diamonds or gold.
Be glad you are worthy
of such honor as this,
and thank the Lord,
that you were picked

dandy lions

I dropped Ciarra off at summer school this morning, she loves it. As we were going in the door, we passed 2 beautiful huge planters full of vibrant color. Ciarra seemed to be reminded of something, she turned to me and said "I have a surprise for you!"
We got in, and she tore off running, grabbed one of the aides and excitedly said FLOWERS..MOM...PICKED...SURPRISE. The aide wasn't sure what she meant at first, but then she figured it out. They walked into another classroom and Ciarra grabbed something off the shelf. She came running to me, hands behind her back, saying "No peeking!" I closed my eyes and crouched down, and she proudly placed a handful of brown, dead dandelions in my waiting hand. The smile on her face melted me, she was so excited. She said "you love them?" and what could I say? Of COURSE I love them. I loved them more than you might think one could love dead day old weeds. I love them because they are a gift from her, a child who finds the beauty in everything around her. I love them because, like her, what's on the outside doesn't even cross my mind anymore. To the unguided eye, what I held was a handful of weeds. As Ciarra's mom, I recognize that they are special weeds. They were picked with love. They were lovingly laid aside to be given as a gift to the mom she worships, they were forgotten temporarily, and they were remembered gleefully and given over as though they were the finest gift ever bestowed. They may be. Because, under the brown, they are still beautiful. Beneath the wilt, there is a tender heart bursting with strength and color, brightness and glory. Just like the daughter who saved them for me, they are a gift I might have passed by had I not been taught to slow down and see the beauty in the world.

Slow Down
I wanted to take a minute to share a few thoughts with you, because they are heavy on my mind right now, and because if I don’t share them they will come out in ways I don’t mean them to. Before I say anything, though, let me thank you for the multitude of hugs and the love you share with my child every day. When I see you drop to your knees to hug her in the hall, my heart goes soft. I know that it takes very special people to give their lives to this kind of work. It surely isnt easy to work with a child everyday who can be stubborn beyond words or whose speech and mind are hard to decipher.
I am writing to say that sometimes reading the words you write about her, I want to grab her up and run away with her, or somehow squish her up and keep her little so she doesn’t have to be a “big girl” anymore. I want to scream at the world, “do you see her?” do you really, really see her? Do you know what tenacity she has to even be here? Do you know more than 70% of babies with Down syndrome die before they ever see the light of the world? It takes immense fortitude for them to ever get here. Did you know that as a newborn, a heart defect nearly took her from us, and that we were even told it would be “ok” if we “let her go”? The world is tough on these kids, right from the start.
Ciarra has been a lesson in so many things for us. We have learned that slowing down and taking the time to savor every step along the way is important. Rushing through life, we missed a lot. Then came her. We have learned so many things. Like her, we have learned to slow down and really take in everything in life that God has chosen to share with us. Leaves, puddles, “paterpillars”, footprints…everything has a story and we arent so busy rushing around now that we cannot stop to find it out. Probably in your world, this is called “dawdling” or “being pokey”. To Ciarra it is all about the walk, not the destination. And we, the grownups who were graced with her presence in out home and our hearts, are learning to slow down and walk it with her. Maybe you can remember this as you rush through the days with her. Rather than seeing only the end of the tunnel, if you take your time, you might see all of the beautiful things that make getting to the end of the tunnel less important.

Another poem:

Slow Down Mommy

crazy days,
busy, full,
wall to wall days.
basketball nights
tourneys, coaches
too late nights.
Big boy, little girl
fighting in the car
muddy boots on my seat
scolding, cajoling,
and here we are.
crazy, crazy days.
Hurry up,
bus is coming
rush and run
toast is burning
drink your juice,
grab your boots
crazy crazy days.
Slip sliding running
bus is coming
we made it
there they go
time to rush to work
I see footprints in the snow.
Tiny footprints, bigger ones
side by side
my heart swells
rushing rushing
through my life
then stopping,
the tears well
Slow down Mommy,
wait for me
my steps are tiny yet
pretty soon
they'll be gone away
there'll be no bus to catch.

Paris Hilton is scared?

Some of you may know this, and some dont, but anyway....when I was 17 years old, I went to the state Jr. Exhibition contest. I took 2nd place. My mom and stepdad had recently divorced, and my brother had moved away to join the Air Force. Just my mom and me at home. And our relationship was NOT good. I dont remember why now, but she didnt even bother going to the Jr Ex (speech) contest, she wasnt very involved with that stuff anyway. I was so proud, I won on a story I wrote myself. I walked home thinking maybe she would be proud of me for once. Instead, I found her sitting in the dark at the kitchen table. I knew when I opened the door I was in trouble. Keep in mind, I was straight A, high honors, NEVER smoked, drank, used drugs etc. I did have boyfriends and she called me all kinds of names over them. But I had been dating Jim for a year and then some by then, I was 17. Anyway, she had been snooping through my room, which she ALWAYS did. She would tape up notes I had shredded, read diaries, every little thing I did was scrutinized. Apparently she had found a note I had written several YEARS before, about a boy i liked a lot. It was full of nonsense and teenaged bs and stupidity, asking my friend if I could get pregnant doing this or that or whatever...I was 14 when it had been written. I remember thinking "I was just being stupid, it wasnt stuff I had DONE!" But anyway, she accused me of all of it. The first words she said when I came in, in this sickening heavy voice was "Sit down". My life changed forever that night. By the end of it, I fought back. I was tired of being seen as BAD, I was a good kid, I had just won this big fancy award, if she would have bothered looking she would have seen my name on the news.
An hour later, I was being handcuffed and stuffed into the back seat of a patrol car. I had made the mistake of not leaving when she shoved me out the door and locked it. I kicked it in and went to my room to get my stuff, my puppy and a few other things. I was halfway down the stairs with my hope chest stuffed with clothes and papaers etc when the cops came in. I tried to explain, but there was no explaining. She wanted me arrested for criminal trespass. When the cop grabbed me off the stairs, I kicked the hope chest down the rest of the way where it went through a wall. So they added vandalizing to the charges. I was booked into our local jail, then transported to the city jail in the next town. I went to a school with a zero tolerance policy, my arrest got me kicked out...21/2 weeks before graduation. I lost my scholarship and my diploma. I wasnt allowed to march with my friends. I didnt graduate. I was SEVENTEEN. Instead, I got fingerprinted, tossed in a cell with a sneer "You ought to feel right at home here, your daddy likes this cell real well." I had done everything in my power to beat the odds, and to be someone. And it didnt change a thing.

I sat in that cell for days, until Jim bailed me out. He picked me up in his truck and drove me 300 miles south, to where he had just moved for work. And that was that. And I didnt graduate, and I know all about jail, and being scared. And I didnt have what that little twit has, a family fighting for me. Or a drinking problem. I didnt speak to my mother again for years. Then we did for awhile, then we stopped again about 7 years ago. Then we started again about 2 years ago. I forgive her, but I will never forget what she cost me in my life. I never trust her or anybody else completely. Paris Hilton doesnt have a lock on being scared, or sick, or lonely. She had EVERY reason to stay straight and be grateful for the life she had, priveleged and spoiled. And she has NO right to any better treatment than the 17 yr old *I* was, scared and shivering in a cold cell watching my entire future fly away for NOTHING.

Friday, June 01, 2007

Heartbreaking. Irritating. Mostly heartbreaking.

took Ciarra in to school today, she has her spring concert, and it is a BIG deal to her. All dressed up, hair looking pretty. :) She got to her reg classroom, and she usually has time to be there for a bit, but we were late, so she was expected in SPec Ed room. She did NOT want to go. When she walked in the door, 2 little friends walked over and hugged her, told her she looked beautiful today. They were just starting to go sit and read a book together when the teacher said "Ciarra you HAVE to go". Her friend Renee tried to ask if she could walk with her, teacher said no.

Poor Ciarra, she is so sad. She wants so badly to stay there. She loves the kids there, and they her. So anyway, we walk down to SE, and she is greeted with smiles and hugs there too, but she wants to go back to her classroom. And she has to go to Special Ed instead. And I CANT change this right now, and it breaks my heart.

I know this is not going to sound right, but...she is SO high functioning. Kids who dont do half of what she does are included in other states...why not HER? It kills me to see it, she HATES it. Sigh...I could just cry, she is so capable, if they would just TRY.

Then I got home and got an email, Center for Community Inclusion will be observing her the week of the 9th. We had asked for Inclusion for her for next year at her IEP, and been turned down flat. The school "doesn't DO Inclusion". I had an advocate with me from Maine Disability Rights Center, she had suggested using The Maine Center for Community Inclusion. We didn't think they would have scheduling time enough to observe her this year. The school said we could wait till fall, when she would already be a 3rd grader, not Inluded. Then we could "address concerns". I wanted it done this year, and a plan for Inclusion to be in place BEFORE 3rd grade. At least the school agreed to have her assessed. It costs a LOT of money, $700 bucks per hour. I would give them my right arm if they could make this work for Ciarra. I assume the school will be paying for it. I just hope and pray I get some support to keep her included. I am sad for her today, and I feel powerless. All I can do now is hope and pray CCI helps make the school understand. This child CAN be in a regular classroom, SHOULD be in a regular classroom. She deserves the chance, and it is the LAW. If CCI cant help us work it out, I will have no choice but to go to court. I hope it doesn't get that far. I just want to not have to fight. But make no mistake. I WILL fight.