Creativity kits for kids!

Impatient Outsider

I’m sitting here with a hot cup of coffee (cream only, hotter the better) thinking about how it’s been a week since I’ve written on here. I’m not sure why.

I feel left out of everything lately. Life in general. I’m the oddball out almost everywhere I go. I enrolled Bella in gymnastics last month, and two moms with babies sat and chatted about breastfeeding/formula/clothes/nights/etc the whole time. It was so hard to hear, then on top of it little baby whimpers that sent me straight back to Children’s with Kaden. I had to get up and leave the room a few times (Bella was in another room completely).

The last day of it, I chose to sit a little ways away from them and could hear them whisper softly about how I thought I was better than them or something. It hurt so much. I wanted to unload my story on them both, watch their faces as they struggled to find something to say to me then. But I didn’t. I ignored them and their living babies and took Bella home at the end.

We start Girl Scouts next week. I was talking with the lead mom yesterday about it by phone, and she said, “The parents all stick around during the meetings, they’ve become such good friends.”

Great, was all I could think. I wonder when I’ll have to explain why I can’t hold their baby without crying while they dash to the restroom or that Bella isn’t my only child.

[Read more...]


What Can We Do? In Kaden’s Memory -

I’ve had people ask this past year what they can do for us with all of this. Truly – there isn’t anything we need besides the prayer, love, and check-in’s you guys are so wonderful about giving.

Yet today, I feel this tug to ask for something on Kaden’s angelversary. Not for us. But in memory of Kaden and what his diagnosis meant to the researchers and advocates for this ciHHV-6 virus.

If you feel led to do something in his memory or in the name of science or for any reason at all – please give to the HHV-6 Foundation. Your donations are tax deductible. The Foundation is a public non-profit organization. They take PayPal. This is where we donated the money raised by you all through Brickyard Buffalo last year.

CIHHV-6

None of this money goes to us, we’ll never know who gave what. There isn’t specific case for him so it will be put where money is needed the most; directly to the research here and across the world (Japan and Germany currently).

Here are just a few of the needs for this foundation:

  • Establishment of a registry for CIHHV-6 individuals: $25,000
  • Study of the disease associations of ciHHV-6: $10,000

Plus:

  • More kits sent to people – with no expense to the patient.
  • More information given to doctors who aren’t even aware this is an issue.
  • More children being diagnosed faster with a better chance of survival.

$5 would pay shipping on a kit. So please don’t think any donation is too small. If you can’t give, perhaps you’ll consider sharing this with your FB/Twitter/whatever you use. :)

That’s all I can think of that I truly want or need on this day. Just a little reminder to the rest of the world seeing his names on forms and papers as they test and diagnose that he is loved and remembered.

Thank you all for the love that you’ve showered on us these past two years.

————-

Find out more about ciHHV-6 and donating.

{And (for my own selfish reasons) if you wanted to send me an email saying you donated, I wouldn’t hate that. ;) In fact it would make my day.}

 

 

The Day Before

Today has been a really terrible day so far.

And it’s only noon here as I write this.

I expected tomorrow to be. The day Kaden died. Really though, I find myself dreading birthdays more than – death days? What on earth do we call these days? Anniversary seems to give it the air of something celebrated. Birthdays are hard – and as my wise friend Emily told me, “It’s because that’s a day when you’re supposed to be happy, but you can’t be.”

Tomorrow is a day I’m supposed to be sad.

[Read more...]

CIHHV-6 and Us

It’s been a while since I’ve written about the HHV-6 Foundation that I started working with shortly after Kaden died last year. The involvement is sporadic since we’re just starting to see how widespread this is, and there is very little information on it all. While most people contract HHV-6 at some point: “Human Herpesvirus 6 (HHV-6) is a set of two closely related herpes viruses known as HHV-6A and HHV-6B that infect nearly all human beings, typically before the age of two.” – HHV-6 Foundation – ours is chromosomally  integrated – so it’s in our DNA. 

Here’s what we do know:

[Read more...]

What Hurts

You know what really hurts lately?

I mean, besides seeing everyone celebrate their kid’s first birthday?

The women who lose babies and make it beautiful and earthy and oh so magical.

Seriously.

I know everyone grieves differently, so I’m not here to judge how anyone does this process. But – in the same breath – these feelings and emotions are part of my process as well. So both are valid.

Just right now, their process really hurts me.

[Read more...]