Starting to Share the Story

Sometimes telling the story is the hardest part.  It had been such a crazy week our heads were still spinning, but even while we were in the hospital there was this mis-conception that we were caught unaware.  I over heard a nurse telling someone how we hadn't known about his disease, and that we were having to deal with that on top of the kidney failure.   I was tired of explaining that this wasn't a new thing, we knew it was coming we just thought we had more time.  Someday had seemed much farther in the future.   As we continued telling family and close friends over the weekend it slowly became easier whether that was because we were just used to telling the story, or we were finally starting to let things sink in is any body's guess.  For now it was people who knew us and knew the history enough to just listen where we were, and offer their suggestions for diet etc.  My mother is a nurse so she helped explain medical terms that I was still sketchy on (like nephrologist or renal doctor, kidney specialist) and calmed me down a lot.  She just listened to what happened and I had no qualms about asking my questions, and I didn't need to be the expert as to what was going on.  On the other hand I also spent a lot of time talking with Rob's sister.  She too has this disease and I spent much of my time trying to convince her Rob wasn't dieing.  She questioned everything and I felt myself defending every move and decision we made, in this case I had to be the expert.  It got to the point many times that Rob would see she was calling and just hand the phone to me and let me do the talking.  If you saw Rob you'd know things while being serious were not dire, but without that option I had to spend a lot of time both getting lectured about why we hadn't been to the doctor and how we shouldn't be leaving the hospital. For her especially like our first doctors it was all about the numbers, when you are at x number then this happens.  While that is true there is some wiggle room and this we learned about as we started to work with his doctor.

For many people it was all about the quickest solution, he needs a kidney now, and that would be the end all be all.  That isn't really how it works and since we had waited so long it wasn't an option either.  We had other steps that needed to be taken.  There is a saying in show business that much of what we do is hurry up then wait.  This is where we were in life we hurried through the testing but now we had to wait for the next someday moment.  For us that was getting ready for dialysis but even that was a ways off.

It was nice that neither of us had to work right after everything we were able to limit who we saw. Over the weekend we stayed mellow and outside of my folks and one or two friends we really didn't see anyone.   We just started to process everything we had been through.  I spent an hour drafting and redrafting an e-mail to Owen's teachers so should he have outbursts or the bigger concern that he was just to tired, they would at least understand a little of what was going on.  It was the first time I put this thing we were going through in writting, and it made it real.  I found as I proof read I couldn't stop crying.  I knew Owen understood some of what was going on especially after the incident at the emergency room.  He had listened to every conversation we had with people and started quoting certain parts back to me,  sometimes he is too smart for his own good.  As much as I wanted to hide everything, to protect him, I knew I couldn't.  I was grateful for the support I received from his teachers.  They not only kept an eye on him but applauded our openness with him.  This came to be a theme through our conversations with people.  Those who had also gone through similar medical emergencies especially who had siblings or parents who went through something.  The concensis was that it was important we continue talking about it with Owen.  It was one of the first right things that happened in a whole lot of wrong.

Then the weekend was over and I had to go back to work.  Not many actually knew what had happened yet, I really had only conversed in text to my boss.  It was a couple of day's before I saw anyone outside of my immediate team, who already knew enough of what was going on and all of us having had medical "baggage" were very supportive.  It wasn't till a few days later that the cat started to escape from the bag. I ran into my manager in the elevator.   She smiled at me and asked how Rob was.  Not realizing how much she did/didn't know I started with my standard "its serious but not dire" statement.  From there came the "we knew he had polysystic kidneys but he will need a new kidney as his are only working at 8%"  I'll never forget the look on her face.  It start out as polite concern and then as the seriousness of what happened sunk in (and I realized she hadn't known) the eyes widened and it became a longer conversation.  Most people who I have talked to about this have known someone on dialysis or who have gotten a transplant and so it becomes almost like trading war stories.  After this accidental slip on my part it was then announce at the executive level.  It became urgent for me to send something out and talk to human resources before the cat had completly escaped.  I started the mountain of paperwork for FMLA even though I didn't understand yet what I would need.  I drafted yet another e-mail with a brief explanation that asked for people to respect my privacy (this one only took me 30 mintues to write and rewrite.)  It was again becoming "real" really fast.  Then, even though we requested people not to, the questions started to pour in.  Rob is an interesting figure in my work life because he used to work at the aquarium with me.  He knows so many of the people there and is more than just "Becky's husband."  As more and more people talked to me there were roughly three types of conversations.  There were ones who this had brought the issue of mortality into sharp focus.  There were those who wanted to swap the war stories, and give the "everything is going to be fine I had a . . . who had . . . and has had their new kidney for . . ."  Finally many asked what they could do, and as much as I appreciated the sentiment my brain couldn't come up with what I needed.  Some just looked at me and told me what they could do (bring a meal when it was time, take care of the kids, take me to lunch and let me just talk, or just make me laugh at life) but even these were hard to process in the momment.  I never want to seem rude or brush anyone aside who wants to help but in the same vein we weren't there yet.  This wasn't a sprint but a marathon and if you looked at Rob you wouldn't have believed him sick (a curse of PKD.)   One of the things I have been most grateful for are the people who have called out of the blue, or sent a message that just told me they were coming over.  I needed the social, the chance to not think about stuff for a while, but no longer had the energy to plan. (Okay I'll admit I didn't do such a great job planning prior either.)  These friends were never pushy and if it wasn't the right time they backed down, but rather than waiting for me to invite they took it upon themselves to populate my calander.  It kept both of us from dwelling and many times it helped entertain and create a sense of normalcy for our kids.

When I was in middle school I lost my grandmother to cancer.  When I first found out I was sad, but a bit relieved because she had been suffering so much for so long.  My mother had let my teachers know and several let me get out of tests or homework.  The teacher I remember the most though was home ecinomics.  It had been several weeks after and it was for some reason just a rough day.  She had never let on that she knew, but that day she walked up to me, gave me a hug and said "if you need to take a break today"  I learned that she had been watching me, and waited for when I really would need the support.   Looking back on what happened at that time, and comparing it to now, there are many people who like that teacher have waited until the moment I needed the support and have just been there.  This is a recurring them for this journey and something I hope to emulate one day when my turn comes to be the supporter rather than the supported.

Next Up:  MEETING DR. MUCZYNSKI