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!
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.