Lest you think life in the Geyling household is always a neatly arranged blog post, let me share a little story about yesterday…
It started out with Rudy’s routine cardiology appointment that included an EKG, Echo and a long discussion about Rudy’s physiology that left me feeling raw and sad (more details on that later), we left the appointment and raced over to SB City College to meet up with his special needs classmates for the spring Special Olympics school games. Rudy didn’t want to go and politely but persistently asked me to take him home the entire way. He missed his first two events so we immediately raced over to his third event all the while he’s saying “I don’t want to” (his new phrase!). I had to leave him to go sell tickets at the high school for a prom event and Rudy asked me repeatedly to take him with me! About broke my heart! While at the event, I saw an acquaintance of mine. She’s a local resident, celebrity, my age (actually 3 years older), couldn’t be sweeter but she has this unfortunate habit of looking amazing every time I see her ;). As I ran back to my car, I caught a glimpse of my reflection in a window looking haggard and old and I burst into tears! I cried all the way to the high school.
Now, I’m not normally insecure about the way I look, and I don’t think my meltdown had anything to do with running into my gorgeous acquaintance but I do believe it had everything to do with contrasts. Although yesterday could be categorized as a pretty benign day to most, for me, it contrasted with the comfortable and manageable life we’ve created for ourselves and reminded me how hard life can be for Rudy…right down to the cobblestone! Have I mentioned before how much I HATE cobblestone. I used to love it for it’s quaint look and historic charm until I started to push a wheelchair over it. Yesterday included cobblestone. And although I understand the value of challenging Rudy and encouraging him to do things he doesn’t want to do, after a while, the positive spin on everything gets tiresome.
When we finally got home after our full day, I raced ahead of Rudy in the garage because I had to go to the bathroom badly. I pushed the garage door button as I stepped into the house leaving Rudy in the garage to make his way into the house at his own speed. It wasn’t until I came out of the bathroom that I realized the garage door hadn’t closed after all and Rudy was gone…having made a beeline for our neighbors house across the street. By the time Olivia and I realized where he was and ran over there, he was purple from head to toe and unable to catch his breath! Disturbing on many levels. The concern over his habit of fleeing when he sees the light of day aside, I wish my boy could walk across the street without it taking such a toll on him physically. So, I ended the day exhausted and raw…and Rudy ended the day corralled in his room for an “extended play time”!
Of course, I’m feeling better after a night’s sleep but there are still residual bags under my eyes…I think we’re gonna stay close to home today and stay clear of any cobblestone.
There was another major milestone this week…Senior Night at the last boys varsity lacrosse home game.
Thanks to our friend Denise, we got a series of fun pics capturing Max in action with a dodge to the goal!!! Oh yeah! (photo credit: Denise Tisdale)
At the start of every cardiology appointment, Dr. Harake asks me if there is anything new to report. There usually isn’t anything worth mentioning but in the past couple of weeks, I’ve heard from Rudy’s school nurse and his physical therapist that they’ve noticed a decrease in Rudy’s stamina. I’ve noticed it at home too so I mentioned it to Dr. Harake. He conducted an EKG in his office and determined there isn’t any blockage…he also did an old-fashioned stress test on Rudy and had him “run” around his office as fast as he could move (actually pretty cute to watch) in addition to the routine echo he gets every appointment. We ended up talking a good bit about Rudy’s physiology and how Rudy’s body is growing but his disproportionate blood flow will remain the same. A gradual decrease in stamina will occur as a result. This is just another one of the many physical signs of the process he is in…when I asked Dr. Harake how concerned we should be, he assured me there wasn’t a significant difference in Rudy’s ventricle size or valve leakage from the last echo. Until Rudy’s demeanor changes and his quality of life is diminished, we stay put! It’ll get worse before it gets better. I know it to be true…we’ve seen it in the many heart kids that are a few steps ahead of Rudy in the journey…it’s what we are constantly told is the course but what a terribly helpless place to be. We can’t turn around and go back, we can’t somehow go around it, our only choice is to move forward through it…arrrrrgh, cobblestone!!! At the end of our discussion, he did mention that we’ll need to talk about a another heart cath at some point but I didn’t get the feeling that was urgent. I suspect we can plan on a procedure free summer.
Speaking of summer, Wilson’s starts THIS Friday!! Rudy is obsessively asking “when is Wilson coming home? Wilson comes home today?”…so much so, that it’s driving me a little loco! I decided to try the old calendar technique! Starting tomorrow, every time he asks about Wilson coming home, he will be directed to this:
Ha Ha! ‘Hope it works! The countdown to summer is officially ON!