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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On Homeschooling Bella

About a month ago, we enrolled Bella at the CDC (Child Development Center) a little ways down the road from our home. It’s an on post child care and early school program that is highly monitored and adorable to boot.

We’ve loved it. I have her going about 3 times a week for a few hours – either so I can work or be in therapy.

Bella's Classroom

A few weeks ago, one of the teachers approached me about her upcoming class for the school year. It’s a morning preschool/PreK and she thought Bella would be a great fit. She showed me her classroom and the teacher inside of me wanted to pack my bags and move in. It was so perfect, with a schedule for the kids I couldn’t have made any more delightful.

I went home and suddenly doubted my desire to homeschool. After all, it was only 8-11am. We could homeschool in the afternoons. I would have time to work and clean, run errands. Bella would be with friends in a wonderful environment and with a great teacher.

What pulled me the most was the thought of normalcy that would come with it. I could be a room mom. My daughter would be in a school setting. After all the things that we’ve had to work through, this would just look so normal to everyone from the outside. We could seem – ok. That was a very huge draw for my heart.

Yet. 

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Count It All Joy {or Trying To}

Today I woke up with the thought, “It feels like God hates me.”

It really does lately. Either He forgot about me, or He’s just having a grand time ruining my life while letting everyone else have a semi normal one. I don’t get it.

So many of you have reached out to me this week – thank you. Like each time we face some trial over the past 4 years, you guys are always there. I’ve been MIA from social media (and still am) because I want to focus on our family right now, with some writing. I did want to let you know that this didn’t involve a baby of our own, we have no intention of getting pregnant again because of the ciHHV-6 virus that my pregnancies activate.

Part of the mess involves an adoption we’ve been working on for the past 2 1/2 months, and the mom (due in October) changed her mind this past week. Totally unrelated to anything else we’re dealing with, but a big hit. We understood it was her right and choice, and I am hopeful that things work out for her and this little one, but it still hurts. It wasn’t something we pursued but rather came to us unexpectedly, and we moved forward in faith, trusting that God had a plan in it. We were waiting to announce anything until the homestudy was approved, and it is. Finalized on Kaden’s birthday through a wonderful agency we’ve worked with since June. It approves us for any age of child up to a year younger than Bella.

That is one of the brightest parts in this all.

The rest is still being worked through, and again, unrelated to the adoption.

Anyway, in the midst of these thoughts of, “Why me, why us, why again do we have to go through more pain?” was the sudden realization this afternoon of something I’d prayed time and again these past few months. That Christ would do whatever He wanted in my life for His will. Whatever it took, that He would use my talents, time, mistakes, and humanity to further His kingdom.

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