Well, we are packing, doing laundry, getting everything ready to spend two weeks in a home away from home. We found a wonderful deal -- a nice hotel not far from the hospital (5 minutes) for $70 a night. We thought it would be easier to stay in one place than to stay in the Ronald McDonald house for one or two nights and then have to move out to another place. I'm thinking about my mental state yet to come. Scary thought.
Yesterday at church, the congregation prayed over Malkolm and Sia and me. It was a refreshing, spiritually uplifting experience. Seems it came just in time. Malkolm was a bit overwhelmed by it all. Sometimes I forget he is 9.
Just before we went up to pray I had a moment of breakdown. The music was echoing in my ears, my heart heavy and aching. Every time my heart beats it sounds so loud in my ears and I wish so badly that I could give it to Malkolm. Give those heart beats to that precious little boy. My baby.
I prayed, pleaded. God, please don't take my baby. Please please please don't need him now. Please give him back to me healed and whole. I need to hold his hand tomorrow. And the day after. And the day after that. I need to see him get excited on Christmas morning and tell me it's okay that we didn't have a birthday party for him again this year. I want to hear him comfort his little sister as she's crying, telling her that just because she has a timeout it doesn't mean Momma doesn't love her. That everything will be okay. I want to hug his future wife and cradle his children in my arms, to marvel how much they look like their daddy. Oh God please don't take my baby, please don't need him now. I need him now. I need him.
I know this is not the faith I claim to profess speaking. This is something else. Something that doesn't come from God, but from my flesh. And it's getting harder and harder to quiet this. But I can say, after we prayed yesterday. With the whole congregation agreeing with us in prayer, I felt like my son had a shield on his chest. Over his heart. A protection that wasn't there before. And I'm going to hold onto that as long as I can.
On a brighter note, we found a story this week that he had written just before he started first grade. It was cool to see how much his writing has progressed since then. I will paste in in below. For those of you who have purchased his story Luna -- you will see a big difference in his use of descriptive language and general flow of the story. It's kind of cool to see that progression.
My heart is heavy, but my spirit is light. I am tired though. Really, really tired. Not because I can't sleep -- there's just so much to do. When my head hits the pillow, I am literally asleep within just a couple of minutes.
Just trying to close most of my ebay listings and give all the necessary connection information to my creative firm partners so they can keep up with clients while I'm away. Thanks to my awesome neighbor and friend, I don't have to close all my listings, as she will be processing my orders for me. Can't thank you enough Jean!!!
We got the cost for the genetic testing today. $5,400. Gotta say that was a bit of a punch in the gut. I think insurance will pay 60% if it gets approved, but that still leaves $2,160 per child. PER CHILD?!! Ahhh, goodness. So how do you chose between paying your bills and making sure your children aren't in danger? Why is this all so expensive?
Malkolm's story has been a smashing success. I know I'm biased, I am his mother. He is my baby, this little person whose heart has grown as big as his body, his heart that ironically is fighting against him every day also represents the care and generosity that he has always shown to others and the feeling that he puts into his writing.
He is wondering if someone will see it who might want to publish it for real. Wouldn't that be swell? I guess time will tell.
ok, well, I need to go get another box of tissues, and I think Malkolm and I are going to play a game of chess. One of many more to come over the next couple of weeks.
MUCH LOVE to you -- thank you for sharing this experience with our family. Thank you for your prayers, your gifts but most of all, thank you for your love. The love you've shown for my son is something that I will never forget no matter how long I live.
Oh, almost forgot about the story. It's called DragonCatcher.
Once upon a time, on a mountain a dragon was born. All the dragons that were flying around gathered. The dragon catcher stole the baby dragon. But on the way, the dragon bit the dragon catcher and the dragon catcher dropped the dragon by accident. The dragon dropped into a trash can in an alley.
In the alley of the city, two teenagers lived. They were orphans. The dragon was in the alley. It was a baby dragon. The teenagers found the baby dragon, but thought it was a lizard.
And day after day, the teenagers fed the “lizard.” And one day the teenagers saw the dragon grow, and grow. First they saw the dragon grow its big, spiky tail. Then they saw its big feet with sharp claws. And then they saw its big, scaly, skinny wings. Finally they saw its big head with sharp teeth.
“Hello,” said the dragon.
“Who said that?” said the teenagers.
“Me” said the dragon.
“You, the lizard? It can’t be!” said the teenagers.
“I’m not a lizard, I’m a dragon.”
Meanwhile . . . in the dragon catcher’s lair, “I’m going to kill a dragon,” said the dragon catcher, “with my secret weapon, the Dragon Killer 3000. Ha! Ha! The dragons couldn’t stand this there are lasers and everything ha! Ha! Ha! Ha!”
“Hello,” said the children.
“Do you want to play?” said the dragon.
“Yes!” said the teenagers.
“Come on!” said the dragon.
“Let’s play ball!” said the teenagers.
All of the sudden the dragon catcher flew by. “Woah!” said the dragon. “Hop on!”
“What’s the matter?” said the teenagers.
“This guy called the “dragon catcher” just flew by said the dragon.
“Oh, ok, let’s go!” said the teenagers.
“Fly down there me and my sister will distract the dragon catcher while you sneak up on him and eat him ok?”
“Ok!” said the dragon. The dragon flew down, the teenagers got off and distracted the dragon catcher, and the dragon ate the dragon catcher. The dragon said, “Thank you, you saved all the dragons and me! Do you want to come with me?”
“Yes!” said the teenagers.