Monday, February 28, 2011

Rare Disease Day

No, this post is not about Noah. Although we did go for the whole "rare" thing, that part of Noah's story is over. Hopefully we are done with the scary medical stuff for good. (Yes, I realize at the speed he lives life there are probably some ER visits in my future, but you know what I mean...) And although it has had a huge impact on my life, it is no longer a major part of my day to day life.
That is not how the story goes for children with rare diseases and their families. There is no end to that part of the story, only the beginning of a "new normal." Every day is greatly affected.

This is very important to me because some dear friends of ours are living just that. Their sweet daughter Calla has a chromosomal disorder called Ring 9. You want to talk about rare--there are only about 120 documented cases. Ever. This means a lot of that dreadful "wait and see" game. There are all kinds of physical and metal challenges see could face. Calla is also legally blind; she has some peripheral vision but the center of her eyes didn't develop. (If you want to know more, visit her CaringBridge site at She is a sweet little peanut and I love her.

Calla's mommy is a fabulous writer and this is from one of her recent CaringBridge posts:
I feel like my life before Calla’s diagnosis is separated from me as though through frosted glass. In a way, her diagnosis was a new beginning for me. Everything is thrown out the window and I’m right there with Calla, learning how to live all over again.It’s incredible, really, how one small person can transform your life -- how one single moment can change your life, and the consequences of that change echo louder and louder through all the succeeding moments until all the pieces of your life are shattered by the sound.
As I cycle through my grief over and over again, I’m struggling to figure out how to reinvent myself, how to find a way to transform and adapt. Every day shapes us into who we are by quiet whispers, but the big moments... the big moments stop us in our tracks and force a loud, drastic, painful change. Those are the moments that bring out the truth in us, both good and bad.

I don't have words to follow that except to ask you to think about and pray for Calla and her family today, and remember that many families are affected by rare diseases.
Oh, and click this: (seriously, it will take half a second, you don't have to do anything else, and it donates $ to a worthy cause)

Dear Calla,
Rare can be scary and it can be lonely. But it is also beautiful and special. And that is what you are. You are very loved.
Auntie Ellie

The tag line for Rare Disease Day is: Alone we are rare. Together we are strong. I pray that all those families feel a special stregth today.

Thursday, February 24, 2011

Humble like a child

This past week we had a FANTASTIC Bible study talking about what it means to "walk humbly" with God. We are look at Micah 6:8 as a church and studying and praying about how we can apply it. I could go on and on about all the good stuff packed in there, but here is one thing that stuck out to me. I have heard the "faith like a child" verses many times, and always liked the concept, but knew there was more to it than I was getting or applying. Now, I have a child. I am starting to get it.

Matthew puts it this way in chapter 18:
1 At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?” 2 He called a little child to him, and placed the child among them. 3 And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. 4 Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven."

I don't know about you, but "humble" has not been one of the first words that comes to my mind when describing children. But think about it. A child knows, depends on, and lives their need for Mommy and Daddy. They accept the love and help given them because they know they need it and know that it is good. They don't second guess it, they don't overanalyze it, they aren't ashamed of it. This is a huge part of what humility looks like. It's not a "woe is me; I'm horrible and can't do anything" attitude. It is realizing who God is, who you are, and acting accordingly.
Like children, who are not shy about expressing the feelings of "I need Mommy--I need her now--I need only her." Noah has very much been in that mood lately. And although the carrying around 20 pounds of clingy toddler and being the only one he wants to do so can get exhausting, what a special bond to share with my son and what a good reminder to me of bigger things.
"I need God--I need Him now--I need only Him." Isn't that what faith pretty much boils down to? Why must we question those things so much as adults? What if we really lived like the children that we are? (For one thing, I would be a whole lot better at the walking humbly with God thing that I am now.)
Well, I'm off to try to be more like my kid.
Thank you, Lord, for my wonderful, precious child and everything you are teaching me through him.

Wednesday, February 16, 2011

Valentine's Day Fun

I am giving myself a gold star (or maybe heart...) for this Valentine's Day. Because I made this:Italian potroast and roasted potatoes, which was de-licious. My Italian chef husband even said it tasted authentically Italian; that is a big compliment.
And see my clever romantic decor--cards we have given each other in the past. We looked through our boxes of saved notes and cards and presents over dessert. I think that will have to be a new Valentine's Day tradition.

And this:
Cheesecake with ganache and chocolate covered strawberries. No further explanation required.

For him:

With him:Not an easy task. But it was worth it. (By the way, you know that whole long nap where I can get everything done that everyone tells me exists and would happen eventually...still waiting.) Noah is a good little helper too.
He helped crush the graham crackers for the crust.

And did an inventory of the entire contents of the cupboard.

We also tried Valentine's Day "fingerpainting" (with pudding).
But... since I actually planned and prepared it, Noah was interested for about 11 seconds. Oh well.
He was stylin' all day long in his Valentine's shirt that he and Daddy picked out.
He sure is a little sweetheart!
I love my boys!!Thank you, Daddy, for persevering to get this wonderful picture!

Wednesday, February 2, 2011

Fun with the sensory

You might remember Noah's first sensory table experience. Where he made faces like this:

I have bumped it up a few notches since then, oh yes I have. Check out this incredibly clever design. A box in a box to catch the mess.

He thought it was pretty cool.

Then this not-so-innocent bystander showed up.

And because they are best buddies, Noah had to try to share some oatmeal with her.

Then the inevitable discovery was made that it is more fun to put it outside the box than actually play with it in.

Then we used our new walking behind things skills to get that silly box out of the way.

Lucy suprisingly stuck around through all of this, and soon we found out why.

Because it was edible of course! I wasn't fast enough to get a picture, but at one point they both had their backs to me eating oatmeal very quickly. Dry oatmeal, yum... (yes, this is why I only use edible things for the sensory table.)

Here Mommy, you can have some too. (He still shares anything and everything; what a sweet boy.)

Noah was here.

A tiny oatmeal handprint on my leg. More fun memories with my fun little boy. Ah, I love being a mom.

Tuesday, February 1, 2011

You Are Mine

You Are Mine
Jamison J. Statema (Go Fish)

Your busy day is at an end
It’s time to go asleep again
Before your dreams take you away
Hear me when I say

You are mine, I will never leave you
I will see you through the night and be here in the morning
Close your eyes and have a good time dreaming
Knowing you will never be alone because you are mine

Everyday I see you grow
And as you do I hope you’ll know
That time brings change and that’s okay
Because one thing will remain

You are mine, I will never leave you
I will see you through the night and be here in the morning
Close your eyes and have a good time dreaming
Knowing you will never be alone because you are mine

It’s time to sleep so close your eyes
And let the stars shine from the sky
From up above God is watching you
And singing to you too, He’s singin’. . .

You are mine, I will never leave you
I will see you through the night and be here in the morning
Close your eyes and have a good time dreaming
Knowing you will never be alone because you are mine