Friday, December 26, 2008

Christmas was saved!

I wanted to update anyone who is reading. The family below that we wanted to raise some funds for ended up with a HUGE turnout. Not only did Christmas get covered, but a few extra bucks for some bigtime bills did, too. THANK YOU to all who dug deep and managed to make it a priority to spare a little (or a lot) extra for someone else at this overwhelming but beautiful time of year. We raised almost a thousand dollars!! Thanks especially to Renee G, your generosity and kindness at the drop of a hat is amazing, and I am forever indebted.

Friday, December 19, 2008

Can you spare 5 dollars?

I have just discovered a fellow blogger is going to REALLY go without for Christmas. Young kids at home, dh just got laid off, the week before Christmas. He works in the auto industry, which we all know is taking a HUGE hit right now. I found out quite by accident, and she didnt ever say a word asking for help. She just let slip something that clued me in, and a few questions later I knew this was going to be a really really hard Christmas unless some elves jumped in. I know a lot of people are strapped this time of year. I know we are. But I can find $5 bucks. You will have to trust me on this one, I cannot and would not reveal names, and you likely wont ever know what came about in regards to their Christmas. I can blog a tiny bit, but there wont be much on details. If you trust me, if you have faith in me that I know real need when I see it, would you please consider making a small contribution to a VERY worthy cause? Good people, these folks. First in line to help anyone they ever hear is in need. Now they are struggling, quietly. And their babies are expecting Santa, too. Please help?

Renee, at Life With My Special K's is going to be the lead Elf here. She will handle any donations via paypal. She is good people, too. Go to and click on SEND MONEY. Put in an amount...ANY amount you can do...and enter her email addy as recipient:

She will take it from there, and do the shopping, then go Elf this very deserving family.

Please help. and please, spread the word. I know we can do this folks. I still believe in Christmas.

Thursday, December 18, 2008

a very sad goodbye

when I was a little girl, I longed for a Grandma. Not just any Grandma, she had to be funny, and playful. She had to smile a lot, and she had to love me very much. We would bake cookies and play games like Hide and Seek. She would be fun, witty, and beautiful. My Mom's mom was alive, but she was not very involved with us, she had 15 kids and by the time her youngest child's daughter came along, there wasnt much left. She gave me some neat memories, for sure. But she wasnt fun, funny, or particularly interested in me. My dad's mom was so wrapped up in her own family, my parents were divorced and we rarely saw them after about age 5. I remember being very proud when I went for a visit once and my picture was hanging in a frame in her kitchen. I felt really special, I mattered. But she never baked cookies or played games. I felt like I was missing out. My mom remarried, and his Mom was my Grandma. But she was never MY Grandma, really. Her husband was my Grandpa, he laughed and played with us, took us to amusement parks. But they lived far away, and she wasnt really Grandma material, baking cookies would have meant flour on her expensive pantsuits, and kids were messy and noisy. I loved them, those Grandmas of mine, but they werent like the Grandmas in the story books. I grew up not ever having that connection, and even as an adult, I craved it.
My Mom remarried when I was well into my own life. The man she married is gregarious, funny, charming, and so decent a man that I can barely believe my luck. I love him, and have told him many a time I wish he was my real Dad. I dont call him Dad, but I wish I was brave enough to. He tells me he loves me often, and we chat on the phone easily, with no self consciousness or discomfort. I love him dearly, and thank God I have him. I always wanted a Daddy too, and he is the best thing I could have gotten in that department.
A few weeks ago, we visited Florida, and spent Thanksgiving with them. My brother and his family drove down from Georgia, and we all crammed into their little retirement community home. It was very nice, MUCH bigger than expected, and full of good food, laughter, and family. Thanksgiving Day I finally met Vern's Mom. It was love at first sight. She was funny, charming, interested in everything I had to say, and a delightful lady all around. It sounds silly to say that I loved her. I know people say it all the time...." OH I LOVE her, shes so cool." But I felt a genuine love for this woman, she raised my Stepdad, after all. The connection between us was automatic. We sat and giggled and laughed and talked for an hour, she asking me questions and checking out my Ipod videos of the kids. The next day, she went shopping with us at a huge mall. We went into stores together, walked together, sat on benches outside together and laughed for no reason.She felt so real to me, so mine. It is hard to explain, but I felt like Finally, I got my Grandma. I like to think it was kind of mutual. I think she and I are a lot alike, same crazy sense of humor, same love of gadgets, and the same love for our families. We dropped her off at home that night, and we hugged goodbye. We would be leaving the next day, and I told her how nice it was to finally meet her, and how much fun I had had with her. I didnt tell her that she had already stolen my heart, that I felt a hole filled up with her. She isnt my blood, but she couldnt have felt more real to me if she was.
Vern was on his way to see his folks this afternoon when his Dad called, and said "Come now." He walked through the door to see EMTs doing CPR on his beloved mother. Massive heart attack, and she was gone. She didnt suffer, I guess. It happened very quickly. And just as fast as it happened, just as fast as her heart stopped beating, I lost the Grandma I had longed for for my whole life. And I am sad. Sadder than I would have ever imagined. I never really "knew" her. I never had the privelege of baking cookies, or watching her bustle around the kitchen. But we laughed, and we had a connection that was instantaneous and deep. My Step Dad told me she had mentioned me many times since that day, how much she liked me, how funny I was, and smart. Like a genuine Grandma, she was bragging about me to her friends.
I feel like I lost something too huge to name today. And yet, I feel deeply honored to have known her, to have known her kindness, enjoyed her laughter. I got my Grandma, it wasnt for very long at all. But I got her. And I will treasure that always. Rest in peace, Grandma Record. You were a treasure.

awwwwwwwwww! Thanks, Ruby's Mom!

I just got home and found I had been nominated for an award. someone thinks my blog is FABULOUS....why THANK YOU!!! I peeked at yours, too, and omg, that is one CAYUUUUTE baby. Ruby's Mommy, who is new to the DS world, nominated me. Very very sweet. Go check out her blog, give her a few words of encouragement...and by the way, did I mention how CUTE lil Miss Ruby is? Yep, THAT cute. :)

Now I have to pick 5 others to send it to:

Shea has a blog that I love to read. It is basically a love letter to her son, Oskar, whom she has never met...yet. Her words move me to tears. She hopes to bring him home soon. He is beautiful...see for yourself:

See, the thing is, Oskar is my child. Maybe he is not my birth child, but he is mine. So as more time passes and the more real to me he gets, the more I worry. Like every mother I want the best for my children, even if that means I go without. So I worry about whether he is loved, held, told he is handsome and smart. I worry if he has a tummy ache. I wonder of someone cuddles him when he is sick. In the midst of all this worry, I feel totallly helpless. It's the same as when someone else looks after your kids. You know that NO ONE is going to do it the way you have. That being said, I am utterly confident that they take good care of Oskar. So with every delay, I have to step back and trust that he is getting what he deserves and needs. My mind tells me he is and that he is very fortunate to live in the country he does, reside in the orphanage he does, and have such caring workers to look after him. However, my heart knows he needs his mommy. So each delay makes me feel like I am loosing control(not a good thing for a control freak). I think I deserve to feel a little bonkers at times. This whole hague thing is enough to make you loose your mind. It does not help that when I do anything I jump in with my whole heart and soul. If I love I do it passionately and with everything I have. I refuse to be afraid, but worry sneaks in when I least expect it. I'd rather do that afterward when I have something to be afraid of. I just want him home. I want him to know that I HAVE LOOKED ALL MY LIFE FOR HIM.

Beautiful, huh?

Ok, how bout number 2 is Charrissa? She is a funny, amazing, AWESOME Mommy of a handful of little ones...and she does it with STYLE. She adopted one of the apples of my eye not very long ago. You can read all about them over there, Miss Ava is just BLOSSOMING. Sigh...its a love story, Im a sap. ;)

Number 3-Shelley. Ok, ok, another adoption blog. Adoption might be why I found them, but it isnt why I keep reading. SOMEHOW she takes it all in stride, young kids, Army husband, several moves, medical stuff. Shes awesome, dont take my word for it...go read.

Number 4- Meredith

I had the absolute pleasure to meet she and her REALLY BEAUTIFUL family recently. Wow. 4 BABIES...little ones...and she makes it look easy. Her hubby is a sweetheart, her kids are angels..honest...and oh yeah...2 of them are adopted. But I knew her before the adoption, so this one doesnt count. :)

Number 5 is Adrienne. She doesnt really know me. But I can honestly say I think of her at least once a day. She is an AWESOME Mommy to a precious little guy named Owen. Her story will make you laugh and cry and everything in between. Seeing Owen grow and change over the last yr or so has touched me deeply. Lucky, lucky boy...and lucky parents too. If I could give one miracle for Christmas, it would be to Adrienne, and I bet she knows what it would be, You will too, go read....

And I have to list 5 Fab. things:

toradol-its a pain med. Im currently on it, spent the day in teh ER, kidney stones...yippee.

my family- I LOVE these people. I even like them. And it just keeps getting better.

Christmas-isnt Christmas FUN? I love this time of year. I just got back from sorting gifts for a Christmas is for Kids program we do through the school every year...some little ones are going to have a GREAT Christmas, and I get to be a part of that. How cool is that?

New friends- Jen & Billy. What would I have done if you guys hadnt wandered into my life? To say I am grateful is an understatement. Where have you been all my life, Jen? Love ya.

Down syndrome-the people this syndrome has brought into my life NEVER cease to amaze me, touch me, make me see things more deeply. I am so grateful to have had my eyes pried open.

Thursday, December 11, 2008

Wednesday, December 10, 2008

Tuesday, December 09, 2008


Ciarra is in 4th grade this year, and truth be told, it is hard. Hard on us, hard on her. Just hard. Academically, she is doing pretty well. She is not having any real behavior issues at all, and for all intents and purposes, she is doing "ok". But something is sliding away from us, from her, and it is worrying me. Her class size this year is MUCH bigger. The teacher really and genuinely likes her, but doesnt seem to come equipped with that THING that makes a kid like Ciarra fit into a classroom easily. She wants to, but she just seems not to have that magic that last years teacher had...and did I mention she has 10 more kids than last years teacher had?

Something about 4th grade is tough. We fought so hard for inclusion, and in many ways we still believe it is the best thing for our daughter. But at the same time, we want HER to have what SHE needs, too. This isnt about me, or ideaology, not about some belief in a place that is :the best" for a kid with Down syndrome. It is about Ciarra, her needs, her wishes, her heart. What she needs to feel right about herself in the world she goes off to every day without me. For the first time ever, I believe full inclusion just isnt the best fit...right now. Who knows what tomorrow will bring, what teachers, what settings, what changes in Ciarra will come to be? Right now, today, as hard as it is, I feel like the best choice for this blossoming little girl of mine is to be in a place that does not stress her so much. I want her to love school. Not tolerate it, not suffer through it. I want her to have a place where she can be successful, where she can raise her hand and be sure she is right, where the people around her know that even the rambling answer she might give is valuable. I have decided to ask for some time in the special education room. We have a new teacher, a man who seems intuitively to know what she needs. He has initiated touch math, with great results...something I asked for for years...something familiar, the same math I learned on. Ciarra likes him, a lot. She likes the classroom. She likes the other kids. There are a variety of kids in there, one other child with DS, one with high functioning autism, one lesser so. A few with just general learning challenges, but all of them delightful, wonderful kids. I feel like on the qwest for "Inclusion" sometimes, we are led to believe that having our precious children in a classroom where they might...GASP!...model BEHAVIORS...of other kids that are less than a bad thing, something to avoid at all costs. And yet, in my heart I know the children in that room are no scarier than she herself is. They have learning disabilities, they have beautiful smiles. And their behaviors as a whole cant be any scarier than those of other, typical, 4th graders. (Said from the perspective of a mommy who had to explain why the middle finger her former best friend showed her is a BIG no-no.)

Ciarra is growing up. She has a right to the best place for her, to be happy in a place where she is appreciated just as she is, and not because she can keep up. Keeping up is killing the spirit that she has. I saw some of that beautiful spirit last week, on vaction last week, when she danced in dressup clothes, pretending to hold the hand of her Prince. It was short-lived, too short. That beauty and uninhibited charm she has is shackled by her desire to be a big kid. It is as though her heart and her mind are at war, and she is learning to put away all of those things that make her smile. She wants so badly to please, but after being wrong a few times, she no longer raises her hand.

She is caught in such a mixed up world, so innocent and yet at the same time so grownup. It struck me last week, as we hurtled from Curious George to one of the world's biggest rollercoasters, from tea parties with her favorite cousin to starting her period on vacation. She is in so many places right now, emotionally, physically, developmentally. What she needs most is the security to be her in a world that is changing fast. I see her fighting back the innocense, trying to be big. That hurts to see. I do not want her to give up the best parts of herself to fit in, to be accepted by the crowd. The kids love her, will they love her when she is not there amongst them everyday? I think so. I want her to succeed, and this is the best decision I can make for her right now. I feel like saying this more or less publicly means I am letting others down. Some people look to us as sort of the trail blazers, and I have always been so strong a supporter for Inclusion. I dont want people to think it cant work for them, or that I have disappointed them, or given up. I am doing what I think is best for MY child, and I hope they will do whats best for theirs. But time and circumstances change, kids change, teachers change, and life changes. I have to keep evaluating, see what works, feel it out for awhile, and make the best decisions I can make..for her. The ego part of me would like to see Ciarra be a superstar in school, get all the answers right, wow them with her intelligence..and she does in some ways. But it is taking a toll on her personality and her heart, and more than I want anything in this world, I want her to be happy. I want to keep her innocense intact, to let her talk about Santa Clause and Barney and Curious George if she wants to. I want her to bake cookies and never know she is learning about measuring. I want her to laugh more than she cries, to succeed more than she fails, and to enjoy this life that is hers, not mine. Tomorrow we meet with the teachers, and we begin the process of cutting down reg ed time. And I feel like this is the right thing for her. I pray it is.