How Living With A Rare Disease Kept Me From Participating in Rare Disease Day 2014

Today is Rare Disease Day. It’s kind of a big deal in my circles; a day to raise awareness for all people who live with a condition that is little known and little understood.

I had some plans, y’all! There were things I was going to do today to celebrate and raise awareness.

But, you know, actually LIVING with our rare disease sort of interfered with those big plans. (Which, incidentally, is why I haven’t been doing things all month to raise awareness of Rare Disease Day.)

Last night, fresh on the heels of our pork pass, we decided to start our sunflower trial with just some plain sunflower oil (since we were having so much trouble shelling the sunflower seeds).

So at dinner I gave Zac 4 tsp. of sunflower seed oil on his nuggets.

He loved them, and seemed perfectly fine.

Until the poop started.

Right at bedtime.

Wait – let me set the stage a bit better. We ate a late dinner thanks to a doctors appointment far away, and so bedtime came a little later than usual. At bedtime, Zac did not want to go to bed. He wanted to PLAY!!

So Darrel and Jed went off to bed while I stayed awake with the incredible bouncing boy.

Half an hour after everyone else had turned in, Zac’s diaper decided it just couldn’t hold it all in…and he pooped everywhere!

Actually, it was somewhat comical – even though I couldn’t stop myself from yelling at him to “Stop moving! Stay still! Don’t squirm! OMG please just don’t move!”

He had decided that we were playing a game of chase, you see, and was determined that Mommy was not going to ‘get’ him!

So as poop oozed down his leg, he scrambled across my couch, rolled on the blankets, ran across the living room, and giggled and laughed the entire time as I stood there, aghast.

It was disgusting.

Finally I got him still, cleaned him up, and cleaned up the living room.

Oy.

Half an hour later another leaker started!

This time I caught him right away and changed his diaper with no poop explosions in my living room!

Fifteen minutes later, another poop. This one didn’t leak, thank Heavens, but it was interesting to change him while he hiccuped and grinned.

Finally at midnight I convinced him to go to sleep. Exhausted, I passed out with him.

Yup. Instead of getting a couple hours of blog writing and awareness raising “stuff” done, I spent my last few hours on Thursday cleaning up poop from my living room. Yay!

The good news is that Zac was so playful! His play was more interactive and intentional than he’s ever played before. I had to assume that, since there were no indications of discomfort or pain, the oil had just “greased his insides” a bit and had also given his brain a quick boost. Woohoo!

Friday morning I woke up in a funk. All those Rare Disease plans I didn’t implement were hanging over my head. I thought I would go ahead and get to work on those plans, but then I remembered my parents were coming over.

Dad was bringing over his tiller and planned to dig up our garden for us; while Darrel and Dad did that, Mom and I were going to make soap. (We’re on our last safe bar!)

So instead of working on anything for Rare Disease Day, I instead ate breakfast and joined Darrel in the kitchen, where he had discovered how to crack those sunflower seeds open!

Darrel and I worked on that until my parents got here, at which point we realized it was raining and the garden digging wasn’t going to happen.

So, while Dad played with the kiddos and kept them alive and entertained, Mom, Darrel and I spent the rest of the day working on making sunbutter for Zac and safe soap for the whole family.

Turns out, neither of those is particularly hard to do…but since we’ve never done them before they took all our concentration.

And all day long, of course, we were watching Zac closely for any signs of a reaction. He ate another 3 tsp. of sunflower seed oil and about 2 T. of the freshly made sunbutter, and he loved it all!

He only pooped once today, and and it was perfect. This morning his weigh in was 24 pounds! That’s the heaviest he’s ever been! (I’ve started keeping a close eye on his weight at food trial times; so far, I’ve noticed that the day after we start a food that turns out to be safe, he has a BIG jump in weight. So I’m feeling very good about sunflower products right now!)

My parents even noticed what I had observed last night about his playing: it really was more intentional and interactive than it had been before.

With no reaction signs, and only a slight decrease in appetite, I’m calling Day 2 of sunflower products a very good start. 

Then it was dinner time and bed time, and so here it is, the end of the day, and I’m just now writing about Rare Disease Day.

Most of the folks who read my blog are probably aware of Rare Disease Day. In case anyone missed hearing about it, though, I wrote about Rare Disease Day last year and frankly, I’m a little tired tonight. A few links is about all I’m going to do.

This year, the theme for Rare Disease Day is “Care”. 

And that’s exactly how I spent my day on Rare Disease Day. 

Instead of raising awareness, instead of setting the internet on fire with Rare Disease photos and campaigns, I spent Rare Disease Day doing the things that Care for my Rare Disease Child.

• I watched him carefully for reaction signs in the midst of this new food trial.
• I made him – completely from scratch – sunbutter to eat and trial.
• I made him some safe soaps that won’t make him sick.
• I continued to do the normal things we do on a daily basis that care for my kids.

(All with the diligent aid of Darrel and my parents, of course! I can’t do it all alone!)

To me, that is perfect and fitting for the theme of this years Rare Disease Day. 

And on that note, I’m off to bed. Did I mention that Zac didn’t let me go to sleep until after midnight last night?

Oh, but one last thing – I was able to hop on to Facebook tonight and see the awesome job everyone else did in raising awareness of Rare Disease Day and getting the stories out. It was fabulous!

Happy Rare Disease Day, everyone!