2 weeks: Joy

On top of all the less Rainbows and Unicorns emotions, there’s this one: Joy.

We have so much to be joyful for!

Our community has been so generous. Last weekend, we had Tunes for Teddy, which was AMAZING in terms of love and support from our community. For the last 6ish weeks, we’ve had an auction, to which so many people donated items and bid on items. We’ve had no lack of offers for meals over Teddy’s many hospitalizations, including this upcoming one. It is difficult and humbling to accept so much generosity – I think until you’ve been in a position to be on the receiving end of so much kindness, it’s hard to picture how hard it really is.

So. Many. People have been generous with their time, love, prayer, and kind thoughts. We have SO MANY people praying for us. So many people offering good thoughts, positive vibes. So many people – friends and strangers – keeping my sweet baby in their thoughts, caring about what happens to him. Amazing.

And there’s the overwhelming joy that my baby is going to get a chance to grow up and live a somewhat normalish life. Hospitals, blood draws, blood pressure checks, and doctors will always be a part of his life, but hopefully, a year or two from now, they’ll be a much much lesser part of his life.   And that he’s getting this chance before his health gets too bad means the world.

This morning, I was giving Teddy his morning meds and it struck me that in another 2 weeks, he *might* have regular blood pressure without the meds. AMAZING. He might have normal blood pressure and not need a bunch of drugs to make that happen. His new kidney just might be actually regulating his blood pressure for him. Wow.

Perhaps we’ll get to stop some of the shots, too. His new kidney SHOULD make the hormone that tells your body to make red blood cells, so he should not need me to inject it into his poor baby legs every week any more.

Those two things alone are huge to me. Amazing.


3 Weeks: Anxious

Oh My God Can It Just Be May 9 Already?? Preferably May 9 in the evening, after it’s all over?

Wikipedia says that Anxiety is “a psychological and physiological state characterized by somatic, emotional, cognitive, and behavioral components. It is the displeasing feeling of fear and concern. The root meaning of the word anxiety is ‘to vex or trouble’; in either presence or absence of psychological stress, anxiety can create feelings of fear, worry, uneasiness, and dread. It is also associated with feelings of restlessness, fatigue, concentration problems, and muscle tension.”


Physical inability to be still. Hyper focus on doing things. Really anything. Jaw tension to the point of giving myself headaches. Grinding my teeth unconsciously. Inability to concentrate. (yeah, combine that with the hyper focus on doing stuff… good times.)

I’ve never really had this amount of lead time before a surgery. I’m accustomed to the anxiety kicking in the night before or the day of a surgery, because that’s about how far in advance I’ve known about it. I’m not accustomed to anxiety kicking in 3 weeks before. Yikes.

I’ve spent most of the LAST 3 weeks living happily in a bubble of denial. But 3 weeks out… the denial isn’t working for me any more and now it’s like Transplant TV playing in my head… all Transplant, All The Time.

Come on, May 9!!

Teddy’s new Bag

Our Sugarbooger backpack was looking very beat up (it just didn’t hold up in the laundry, then Teddy spilled paint on it). The backpack that came with the pump is small, but not insulated. Teddy needed a new backpack for his feeding pump and bag.

DSC_0817 2013-04-06 19.07.36

I searched ALL OVER the internet looking for toddler sized backpacks no larger than 10 inches tall that were insulated. No dice. So I ended up deciding to go with a small lunchbag that I could add straps to. This Skip Hop lunchbag came from Amazon and then I added the orange backpack straps and a snap loop inside to hold the bag. It’s very sturdy – MUCH sturdier than the Sugarbooger bag ever was. It stands up on its own. It seems well insulated. Teddy seems to love it 🙂 I think it’s adorable! Hopefully, it holds up to our daily abuse.

Tunes for Teddy AND 31 Bags Party

This 31 Bags party ends today, the seller is donating her commission to NFT in honor of Teddy (for his fund). If you like 31 bags, or are looking for a Mother’s Day or Graduation gift, go check it out!

Tunes for Teddy is coming up on Saturday – wow! Be sure to buy your tickets! There’s still plenty of tickets available. The evening should be super fun – local bluegrass band CW Hobbs, Face Painting and activities for kids, a Photo Booth, Hula Hooping and swing dancing (with a free lesson!), and a Taco bar. Tickets are just $12 in advance and $15 at the door.

4 weeks to go: Scared

Yeah. The big one. Scared.

I don’t know that I have much to say about this. This is scary.

The surgery itself is scary. He’s had surgery before, but this is a BIG surgery.

The immediate post-transplant time is scary.

We’ll be in the PICU, which is new to us, and that’s scary.

I’ve never had to do blenderized diet in the hospital that’s… intimidating.

Then there’s the whole We’re Going To Send You Home And You’re In Charge Of Keeping That New Kidney Happy aspect of what will be our New Normal. Scary.

It’s all so unknown. Scary.

I feel horrifically unprepared for this, but I don’t know what else I could be doing to GET prepared. Scary.

Realistically, this particular surgery isn’t that much more likely to be fatal than any other surgery. It’s not particularly dangerous. But there’s that overhanging sense of there being so many things that could go wrong, any one of which leads us down the road we try not to think about. Scary.


And, yes, we trust God. This isn’t about trusting God. I know that trusting God isn’t a guarantee of anything other than that He has a plan that I can’t see and that ultimately, it’s for good things. But there’s no short-term guarantees there, a fact of which I am well aware. There’s no Trust God and everything will work out the way you want it to verse in the Bible. There’s just Trust God. And, frankly, that’s REALLY hard to do sometimes.