Heaven's Very Special Child...

Heaven's Very Special Child

A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above-
"This special child will need much love.
His progress may be very slow,
Accomplishment he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
So many times he will be labeled
different,helpless and disabled.
So, let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stonger faith, and richer love.
And soon they'll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven's very special child."


Edna Massimilla

Santa's sleigh was in the shop...

Santa Claus came to town so we took the kids to see the big arrival. Even the big boys went with us. It made for some great quality family bonding time. He arrived in a horse drawn carriage - we told the girls Santa's sleigh was in the shop and the reindeer were resting up for their big travels on Christmas Eve. The girls were a little scared to sit on Santa's lap - Emma never did and she also did not utter one word of her Christmas wishes to Santa. Abbie got a little more brave - she sat on Santa's lap and told him she wanted a princess for Christmas. She would probably do anything for a new princess! Joey sat on his lap too - he didn't even try to pull on Santa's beard! John and Tommie were good sports and earned a candy cane from Santa.
I was hoping for an awesome picture of all of them with Santa but it was pretty crowded in Santa's tiny house with him, the 7 of us and a lady from the Chamber of Commerce in there. The weather was beautiful and we enjoyed a nice ride in Santa's carriage before we went home.

Here comes Santa Claus...

He's getting closer!

There he is!

Riding in Santa's carriage...

Emma and Abbie were a little shy...

They did get closer but you can't see their faces! Too much light I guess!

Joey liked Santa right away!

Dad and Joey taking a little stroll...

John earned his varsity letter for football!

Our little cover boy...

Is that a handsome face or what? Joey is on the cover of the latest issue of Reaching Out...the newsletter that the CdLS Foundation publishes 4 times a year. Reaching Out is full of all the latest news about Cornelia de Lange Syndrome, fundraising efforts and all kinds of helpful information. The picture of Joey was taken by Rick Guidotti of Positive Exposure last summer at the CdLS Conference in Chicago. To read the latest issue of Reaching Out, click here. If you are raising a child with Cornelia de Lange Syndrome or know someone who is, please contact the CdLS Foundation. You will be so glad you did. They are a wealth of information and support. You will discover that you are not alone.

Halloween adventures...

Halloween has passed. Setting the clocks back an hour has passed. 23 days til Thanksgiving. Only 51 shopping days left til Christmas. Is it just me or is 2009 getting away from all of us? I feel like everything is happening in the blink of an eye! We had a lot of activities we took part in for Halloween. Our local downtown businesses had a trick or treat day. We went to a Halloween Carnival in a neighboring town. Our church hosted a Halloween party for kids. Joey and the girls had classroom parties. The day before Halloween, I successfully managed to get 1 eighth grade science project, 1 crocodile, 2 princesses, 2 teenagers, 12 teacher treats and 68 kid treats out the door by 7:45a.m. Yay for me! I also sported my orange light up Halloween shirt and helped out with Joey's kindergarten party. And don't forget the good old fashioned trick or treating. We have enough candy in our home to feed an army 3 square candy meals a day for several weeks to come. I also found a new favorite - Reese's Fast Break. Chocolate, peanut butter and soft nougat. It is yummy! But of course I didn't figure that out by sneaking into the kid's candy when no one is home! I would never, ever do that!

Here we are at a Halloween party at our church. There were all kinds of games to play!

Joey wore the same costume he wore last year...it still fits and it keeps him warm when we are trick or treating! We will have to see if it sticks around for a third year!

Emma wore a mermaid outfit and Abbie wore a Snow White dress...they wanted to save their princess costumes for their school party and trick or treating.

That's Tommie under the hoop - he was helping at the basketball game station

Ready for trick or treating! Princess Emma in pink and Princess Abbie in purple! She claimed she was still Snow White - just dressed for a party!

Caught a couple shots of Joey walking in his crocodile suit...

Tried to get them to stand still together for a picture...

The boys took them trick or treating to our neighbor's house. Right after this the boys took off to be with their friends. We weren't cool enough to hang out with I guess!

I went and helped at Joey's kindergarten Halloween party! Put on my orange light up Halloween shirt and had fun with the kids. Joey is at the end of the table with his para having a cookie.

Here's Joey class in their costumes...they got to parade around to the other kindergarten classrooms.

X marks the spot

I'm not sure if you can read the above picture, but it is Joey's Kindergarten report card. He brought it home in his folder the other day. At first I was so excited! I'm thinking to myself I can't wait to look at it! I am so proud of how well he is doing in school! His social skills are great, his teachers really like him, he's been doing some great learning activities and his walking is getting better and better every day! As I started to read his report card, my emotions slowly deflated. Knows letter sounds...x. Knows letter names...x. Uses sounds to make words...x. Understands math concepts...x. Writes name...x. Counts objects correctly...x. I'm thinking "x"? What kind of grade is "x"? It turns out that "x" stands for "not evaluated at this time". I'm not sure what I was thinking...I guess I should have prepared myself somewhat before I looked at his report card. I guess I didn't know what his first kindergarten report card would be like. I was just excited to see it. I don't know if I thought I would see A's and B's like on John and Tommie's report cards...or E's, S's and G's for excellent, satisfactory and good. I don't know. All I know is I was sooooo excited that Joey brought home his first report card! And I can't leave out that he got two G's for music and two S's in P.E. Yay Joey! But it was seeing all those x's that really brought me down. Why is it when things seem to be going so great for your child there always seems to be one word, one phrase or one action that just knocks the wind out of you? Not evaluated at this time. Of course he can't be evaluated for these skills at this time...he is unable to do them. This is what hit me like a ton of bricks. When will he be able to be evaluated for these skills? When he is 10? 15? 20? 30? 40? I know he is unable to perform the same tasks as his kindergarten peers - but he has a great ability to learn. We have high hopes that someday he will be able to do these things. It's just kind of scary to not know when that someday will be. When you are raising a child, regardless of their abilities, there are joys and triumphs and unfortunately some sorrows too. Hopefully the joys and triumphs far outweigh the sorrow. This report card called life is full of A's, B's, G's, S's, E's and of course X's too. We just have to do the best we can. A friend of ours has this saying in her email signature: "Nobody can go back and start a new beginning, but anyone can start today and make a new ending." So that's what I'm gonna do.