Spoonful of Sugar

More often than I like, I sit in a chilly exam room at a children's clinic patiently (well, maybe not always so patient) waiting for a doctor to come in and explain the details of the most recent test results. The quiet tapping on the door lets me know that the wait is finally over and we may actually get some kind of answer to this medical quagmire. The doctor smiles, shakes my hand, comments on how much Rae has grown/progressed, and after exchanging a few other pleasantries we get down to the nitty gritty...

What did the test determine?

In our case, every test comes back normal (with the exception of the most recent mitochondrial testing completed at Baylor University but that is another story) and then we discuss the next possible test that may rule another syndrome in or out. The doctor gently goes over the symptoms and gives me a Cliff Note version of its details. In turn I smile, nod, and utter the occasional "Ah", "I see", and "Uh-huh's." Occasionally, these turn into questions like: "What does that mean?" "Is it treatable?" "If that comes back normal, what's next?" It's like being partners in a well choreographed dance routine (The Doctor Dance). He spins me around till I'm dizzy from all the medical jargon. I leap into the air, putting faith in his expertise, praying that he'll catch me before I face plant onto the stage floor. And we're both hopeful...so very, VERY hopeful!

After an appointment (especially if I am flying solo) it is up to me to filter the information down to everyone. This is probably the most difficult part because I don't want to upset them unnecessarily. Do I try to explain what I don't even fully understand? Do I tell them everything? Do I wait until the next round of test results are in? Do I want to try to answer all of their questions? What's the best way of breaking the news (bad not good...good news gets screamed from the rooftop of the tallest building I can find)? Should I sweeten the blow or just give it to them straight? How do I tell everyone? Help!

*POOF*

I magically transform into Mary Poppins complete with a 5lb bag of sugar and silver spoon! I start mixing heaps of sugary goodness into the information I give out (omitting most of the really bad stuff) praying that it makes it easier for them to swallow the castor oil that Rae's testing has become for me. Instead of just drowning them with all the negative, I try to add in whatever silver lining I can scrounge up (sometimes that in itself is a challenge). I also try to give it out in small doses...a little here...(let it sink in)...a little there...(wrap your mind around it)...one more does...there ya go! All done!!

"Rae will probably need a wheelchair next spring, but at least we can paint it pink and have flames added to it."

"Rae may not speak for awhile, but she makes great eye contact!"

"The doctor(s) said they wanted to check for <insert random horrifying syndrome>, but she doesn't have <insert more horrifying random syndrome>!"

I could keep going, but I think you get the picture...

The sad thing is...no one really eases me into bad news (they think they do, but they don't)...at least Rae's doctors don't. I have sat in one doctor appointment after another being told all these potentionally horrible things (more recently,"...her life expectancy could change." That never crossed my mind till that appointment) that may or may not be the cause of Rae's muddled up diagnoses and they just lay it out on the table. On one hand I appreciate it, honestly, I do (well...sorta). It rips the bandaid right off and forces me to move forward from denial and into proactive decision making. On the other hand...

I HATE IT!

I hate it because I have to take my medicine without any sugar to sweeten the better taste that lingers in my mouth. No one lets the blow to my gut recover before punching me in the kidney. While some get to know only what we tell them (unless they google it and then they might get a little freaked out), we get to carry the full knowledge of what these test can potentially mean for our lives. I guess what I'm trying to say is... Momma wants a little sugar!!! Not all the time, but maybe...just maybe...a little sugar would do me some good.

If you find yourself on the receiving end of bad news (especially from me), please keep in mind that the person sharing the information with you probably has a lot more that they aren't sharing. Their burden might be heavier then they are letting you know and bombarding them with "well intentioned" suggestions or a myriad of questions may not be the most helpful thing you can offer them at that time. I give you sugar...please give me time. We can hash out the details later.

Whole Lotta Shakin'...Act One

Might as well rip the band-aid off...

Oww, oww, owwwwww!

Rae is epileptic. I'd like to say that I'm in some state of shock or in denial about her most recent diagnosis, but I'm not. Instead, I have jumped off the high dive, in full on free fall, holding my nose closed with my fingers, waiting to be smacked by the hard, cold water and hoping for the best.

Here's the backstory:

Rae had tremors when she was only a few months old. I mentioned it to our PCP and he felt it was normal given the situation in which they occurred (usually right when she woke up). We were all fairly confident that she was having some kind of startle reaction to whatever environment she found herself when upon opening her eyes. Oops!

I later mentioned this again to our Neurologist (at six months), but once again he felt that was perfectly normal give her age and it was not anything to be too concerned about at this time. Double Oops!!

Months pass....

My husband was still concerned about the tremors and I was in some sort of denial and still believed that maybe (knock on wood) they weren't anything serious and still just some kind of startle response. Now I'm mentally flogging myself because I was wrong. My gut was right, but my actions were totally wrong.

It wasn't until I started talking to an employee of our local Babies R Us, whose daughter is epileptic, that I began to seriously doubt what we were actually dealing with and began believing she was having (gulp!)...SEIZURES! After I described what Rae was doing, the woman advised me to record the tremors and take them to the doctor. It would be easier to show them what was happening because unless she had a seizure while in their office or during testing they wouldn't know what was actually going on. That's when I started climbing the ladder of the high dive.

I went home, charged my video camera, dumped all previously recorded videos into my computer, made an appointment with Dr. A for the following week and waited. In order to ensure that I captured the tremors on video, I made Rae nap in our living room. During that time, I discovered that she was having these episodes way more often than I believed. Almost EVERY nap time she would awaken suddenly, get a vacant look in her eyes, and shake...all over. I wept.

After a few more videos, some minor editing, and uploading the compilation to my Nook I was ready for our appointment with Dr. A...or at least I thought I was. When he viewed my video he was instantly concerned, stepped outside to place a call to our neuro, Dr. H, and wanted to have an EEG done asap...(big gulp!)...my mind was screaming, "That can't be good!" In a matter of minutes, we were scheduled for a sleep deprived EEG at 2 that afternoon. Now I just had to keep her awake till then, which is usually not a problem since she hasn't been napping till 3 or 4, but of course today had to be the day that she wanted a nap.

The video is a tad long and the final clip is to show that it wasn't noise or touch waking her.

I make arrangements for Mimi, my Mom, to ride to the children's hospital with me so she could keep Rae awake. That worked perfectly until we reached the parking garage. We waited for like five minutes for a woman to evacuate her space. I swear she was twiddling her thumbs. That's when Rae chose to nod off...she was out in an instant (crap, crap, crap). I threw my truck into park, hopped out of the drivers seat, flung the back door open, desperately unlocked her 5-point harness (while Mimi was rubbing her face with a cold wet towel), lifted her out of the car and started swinging her in the air. I'm sure the three car caravan behind me thought I had lost my mind. Once I passed Rae off to Mimi, I took my place back behind the wheel and proceeded to beep my horn at the oblivious women in the SUV. I was never happier to see reverse light trigger. FINALLY!!

Well, much to Rae's displeasure. we made it to the hospital and she was still awake. Now we had to get past registration and through the EEG... All I can think while walking the plank is, "I sure hope I don't belly flop."

*Shakin' Part 2 coming soon...