Wednesday, March 16, 2011

When It All Stops

I was cleaning out my Inbox tonight because every time I opened it, it screamed that it was full to bursting. I stumbled upon this email to and from a friend, and realized I'd forgotten all about it.

Sort of. Because the stuff I wrote in that old email is etched into my sinews and scratched into my bones, so even if it's not on my mind, it's in me.

Everything is so good with our youngest son Tanner right now. He's holding his own with his kidney disease. And I love living in the moment of well being. That's why, right now, when I'm feeling safe and happy and full of hope, might be the best time to share this.

Since this was written (and settle in, it's a long read....) we've dodged chemo, blessedly turned around a long relapse, and have brought all Tan's important readings into the "normal" range. I love normal. It's a lovely juxtaposition against the alternative.

You think you're OK...and in the thick of the bad times, we really are lifted up so we can be OK...but sometimes everything stops and things we didn't even know were there come spilling out. I actually drafted the below a couple of years ago, but only shared it with my friend last Spring, at a time when I had ground to a halt and couldn't function, though I was trying to keep that to myself, as well. As I said to her in my email, "I think of nothing for hours. I feel bereft of spirit....In short, I'm not myself. And the me that's left behind is no one I know."

Referring to the post below, I said, "Finding out that when I think I'm thinking of one thing, but I'm really filled to the brim with stuff like this, it's no wonder that everything is getting stymied and that I'm just not able to connect anywhere."

Here's the post that was never posted.... (Remember, all is good and happy now. Sometimes, having a chronically ill child just gets rough.)

NO TV? Not a Problem (draft)

When I sat down to write this little ditty the other day, I wrote the headline first. Because that's what this post was supposed to be about. I was going to write - humorously, I hoped - about how when we got home from a hospital stay with Tanner, after a long month of running around the state trying to figure out what was wrong with him, we found the cable had been disconnected because I forgot to pay the bill.

That was August 2008 and we decided, hey, let's try not having TV awhile. It's been OK; we haven't missed it TOO often. Then, I turned on Fox 10 News this morning at my Mom's while trying to write for a client, and after hearing the anchors (both male and female) tease a segment on the proper way to pluck your eyebrows no less than 6 times in the hour prior to the segment actually running, I decided that I really didn't miss TV. So, I tuned the TV to a music station and sat back down to my writing assignment.

That was it. That is what I intended to write about, dressed up with all sorts of witticisms and no-TV kid anecdotes, of course.

So, I wrote my headline and started writing what I thought would be that post. This is what came out instead. I guess this must have been waiting around back there in the nooks and crannies of my mind, waiting to be heard. As it unfolded, and I realized there was no way to bring this back around to my intended topic, I decided to just give in. So here it goes. While you read this, know that all is really well. Tanner's doing great. I even ran into his teacher the other day at lunchtime and she told me he'd had 3 points taken away so far that day for chit-chatting. We were both delighted, then I was obliged to tell her to tell him that his mom said to quit talking. She laughed and said she would, then we both agreed again that it felt good to have him feeling good enough to misbehave in class.

So, he's fine. I'm fine. But stuff like this is still sunk into the fibre of my being, as I'm sure it is in Tanner's. And Mike's. And Adam's. And my Mom's and Dad's. And my sister's. And the girls'. And Mike's mom. And all who love Tan and us. Memories are a tricky thing. They can hijack your heart for a little while. I've learned to let them roll over me rather than fighting them, and then move on. Letting a remembrance wash over me unencumbered by trying to stifle it somehow allows the joy to edge back in a little sooner.

All that said, here's how I approached writing about not missing TV. Imagine my surprise:

After we'd spent a month going from doctor to doctor, putting Tanner through test after test; watched him wasting away before our eyes, too weak to sit up or hold his head up, or even talk much of the time, we spent 10 days in the hospital in Flagstaff. Specialists in the Valley were consulted; a pediatric gastroenterologist from Phoenix Children's Hospital visited, tested, probed painfully, and pronounced that the tests on Tanner's internal systems showed he had endured an unidentified traumatic illness, but there was evidence of initial healing in his colon. Finally, after he'd been on IV nutrition for 7 days, and had been able to hold down liquid without throwing up or being thrown into prolonged bouts of desperately clenched, fetal-position agony, we were allowed to take him home. He was skeletal. He'd been one month without a meal.

The last few days in the hospital, they finally allowed us to let him try Saltine crackers. He couldn't tolerate them at first. The above-described, so-hard-to-watch agony would ensue. As the days went on, however, he could finally nibble a half a cracker without pain. Then, the day before he went home, he WANTED the crackers. And, after coaxing and pleading with him to try to eat during the past month, I had to hold back.

We were allowed to feed him one cracker, wait for 45 minutes to see if he reacted, then give him another one. It was horribly ironic that after all this time, watching him grow weaker and sicker and quieter, when he couldn't tolerate food or drink, that now I had to firmly deny him when he would beg me for another cracker during the waiting period; pleading because he was so hungry. And I had to deny him. After about 6 hours of this, when it was evident that he actually was finally able to tolerate food in his digestive system, we were allowed to let him eat the crackers as he wanted them. He was in heaven.

It was a hard 6 hours. It was a hard month. It had been a hard summer, and it became a hard fall. We returned from the Flagstaff hospital sometime in August, but Tanner was never quite well. Then November came and we finally got a diagnosis after a tense ambulance ride to the Valley from Flagstaff, when Tanner showed symptoms of an often fatal condition. While the ride was taut with the strain of the unknown, there had been a blessing given in the examination room of the pediatrician's office that promised peace and calm, and the promise was granted; so Tan and I were no longer fearful, just intent. Part of the strain for me came from Tan and I being engaged in something so big and dangerous, and Mike being home asleep after a long night's work, completely unaware of the dramatic scene unfolding with our youngest son. I felt somehow guilty that he, who is so in love with his kids, should be oblivious to the severity of the situation. Knowing Mike sleeps like a log, and wouldn't be roused by the phone, I called a friend who lives down the road and asked her to please go to the house, to go into our bedroom and wake Mike and tell him what was going on. I knew that was an awkward thing to ask someone to do, but I couldn't stand him not knowing. It wasn't fair that he might wake hours later to find he'd missed something so important.

Not long after that request of my friend, I got the groggy, confused call from Mike as he struggled to climb out of the deep furrows of sleep and comprehend the gravity of what I was sharing with him. How do you get pulled from sleep to hear the words, "They told us that the fact that Tanner is still with us is a very good sign. Usually, if someone is going to die from this, it will happen in the first 24 to 48 hours of onset."

Onset. A word that would come to figure boldly in our lives.

While Tan didn't have the dire disease they initially thought, he was experiencing a pretty severe relapse of another kidney disease that had gone undiagnosed. It turns our that the onset of this condition that would turn all of our lives, but especially Tanner's, on edge, was a key to how he would fare in the long run. The onset, though we didn't know it at the time, had been a scary, sudden bout of crippling arthritis just a few weeks after school let out for summer. The severe arthritis landed him on crutches for a week, then went away.

The 1st relapse, we now learned, had been the long month of desperate pain described above. The copious amounts of bleeding and protein spilling (another phrase that now plays a leading role in our lives) that put Tanner in the ambulance was another flare. The relapses in a relatively short period of time with such a dramatic onset of severe symptoms put Tanner outside of the group of patients with his condition that experience a relatively benign (albeit painful) and limited duration of the disease. Tanner's brand of onset means lifelong care under a kidney specialist.

His onset means he will likely have continued relapses, times when his kidneys are at great risk of failing. Days when we'll diligently monitor his blood pressure, his protein output, the amount of blood in his urine, whether he's swelling, whether he's nauseated or vomiting. If 5 days go by and the tricky symptoms abate, then we can go back to normal. If he goes longer than 5 days, then it's increased treatments with toxic meds and perhaps more serious medical interventions.

Those toxic meds. They keep kidney patients off dialysis, which most would agree is a pretty unpleasant life condition. So, we're grateful for these risky meds. Still, it's a little bit anxiety producing each month when we have his blood drawn to check his kidney function, yes; but also to check how his bone marrow is faring. See, the immunosuppressive drugs he's on include anti-rejection medication - the same that people who have already had an organ or bone marrow transplant take. Only Tan takes it at about 6 times the dosage of many transplant patients. And one of the more serious risks involved with this medication is that it can cause bone marrow to fail. So, monthly, we check those all-important platelet counts and other markers to make sure the treatment for his kidneys isn't the trigger of other threatening illnesses.

We wish Tanner's disease had been milder - both to have spared him many harrowing experiences and because it might have pointed to an easier future path for Tan. But, we've had lots of blessings along the way. With such a severe onset, his kidney doctor expected to find signs of great damage to important systems in Tanner's kidneys; a biopsy revealed surprisingly little damage. Also, in spite of tough relapses in the past year, Tan's kidneys right themselves and don't show signs of additional scarring or loss of function. That's a tremendous and unexpected blessing. And, during our last visit, the doctor spoke of real reason to hope that we might not have to go down that path to dialysis and transplant that his onset could have otherwise set him up for. That's a tremendous blessing, too.

And speaking of blessings, there have been literal blessings given to Tanner in critical moments by holders of the priesthood, which promised peace. And one blessing even said the time would come that Tanner would put this behind him.

Can your heart gasp? It feels, every time I think of those words, that my heart actually gasps as I wonder, "Did that mean that the acute illness he was experiencing at that moment would be put behind him?" (It was.) Or, "Does it mean that ALL of this will be left behind at some point?"

I don't know the answer to that. I know what I hope. I feel like I don't dare utter the words or some pinched little creature will take my hope and rip it and stomp on it and grind it into dust. But, oh, what I hope.

Do these musings belabour me every day? Absolutely not. I'm getting good at living in the moment, at least in this regard, and appreciating - even expecting - every good day. Am I surprised when these musings tumble forth in the most unexpected moments - when I'm pondering the ridiculousness of a news segment about eyebrow plucking, for instance?

Yes, sometimes the intensity of memories and wonderings shock me. But, I have learned that while we are not lifted out of these trials - as much as we might wish to be - we are never left alone as we work our way through them. And that is a gift.

I don't know what the rest of this journey will be like. I don't know what Tanner or we will be called to endure. I don't know if one day it will be a memory of the trial before the blessing of healing, or a lifetime of appreciating every blessing that guides us through the difficulties. I know the experiences have changed us in ways we may not yet understand. I pray that someday Tanner will look back on a long, healthy, strong life and use this experience to bless others. To give hope to others who may need it. To say, "I overcame this. So can you."

I hope. I pray. And, then I get back to work. Which, now that all of that has tumbled out and quit taking up space, maybe I can do.

Love from the farm,

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