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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.

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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:

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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.

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When Your Rainbow Baby Dies

Kaden was my rainbow baby. My child after the storm. The one that was going to fix it all. The pain. The brokenness. The trauma.

The ache of starting motherhood at the beginning with a tiny one.

He was the answer.

Definition: A “rainbow baby” is a baby that is born following a miscarriage or still birth.

Saturday he would have been 11 months. I sat in church the next morning, and a woman next to me gently placed her hand on my shoulder as we prayed quietly. I didn’t know her, I wasn’t praying out loud. Yet her and her husband prayed for Sam and I, for whatever we faced that we would trust God in it. I was blown away by their love.

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