To Be Honest

I have been called forthright, honest, very honest and, no doubt, a lot of other things that I’m not aware of.  For better or worse, I say what I mean and mean what I say and don’t hold much back.  I know people appreciate my honesty when sharing Jack’s journey because I keep it real.  But, [to be honest], I find myself struggling with how much I want to share and how honest I want to be as we navigate this journey after an exceptionally difficult year.  Things have changed and the course is no longer steady, but rather uncertain, unpredictable and confusing.  The decisions to be made are no longer straight forward and clear-cut and are often fraught with doubt.  I worry about being judged and yet, know that there isn’t a single person out there who can judge me more harshly than I judge myself.   

All that being said, it doesn’t seem right to stop sharing the journey just because the going has gotten tough. So, I will do my best to continue to share our journey and to “keep it real” despite how difficult and raw that may be at times.  And, I’ll try to be mindful of what Jack’s new pediatrician pointed out to me:  “this is your journey and no one else’s.”

So how are things going?  Last week we saw the nephrologist and got the results of Jack’s repeat 24-hour urine test that looks at the composition of Jack’s urine and identifies those things that are indicative of an increased risk for kidney stones.  It’s not really encouraging when the nephrologist pulls out the report and says, “Jack, you are giving me a headache.”  In other words, his numbers don’t make any sense.  In particular, his oxalate level more than doubled since the last test.  If you Google “high oxalate level in urine”, you’ll see that there could be any number of reasons for a high oxalate level.  Before the nephrologist got too far into the discussion regarding the test results, I told her about what we learned in St. Louis regarding Jack’s decreased heart function and let her know that, for a number of reasons, we are now taking a palliative care approach with Jack.  After getting that on the table, I asked her what her next step would be as a result of the abnormal numbers.  She said she’d start by ordering several different blood tests.  She also wanted to re-check Jack's potassium level after the high level they got two weeks ago, which incidentally came back normal when it was re-checked the next day.  I told her, at this point, I want to hold off on doing any blood work.  

And this is an example of how the decision-making process has changed.  In the past, I would have moved forward full steam ahead to get the blood work done, gather the information and insist that we do something to try and resolve the problem.  But, now I stop and think about (1) whether gathering the information will be a painful procedure for Jack; and (2) once I get the information, what will I do with it. Will it lead to more invasive testing and/or treatment? 

Palliative care focuses on relieving and preventing suffering and not on curing the underlying cause or disease.  Because Jack is doing well right now, I don’t feel like I should subject him to a nearly impossible blood draw to gather information that I don’t know that I’d do anything with once I obtained it.  Yet, after having made this decision, I still struggle with whether it was the right decision.  I feel like I’m sitting on my hands and, after fourteen years of aggressively “doing” for Jack, it is very hard to just be still and think before leaping.  There is nothing that says I can’t change my mind later on, as no decision is final.  But for now, we wait, watch and take our cues from Jack.

One of the many benefits of switching to our new pediatrician is that we are now enrolled in the palliative care home program.  On Monday, I met with someone from the program.  I actually knew of her and she of me because she refers parents to The Willow Tree Foundation for respite opportunities.  She told me about the program, offered her support and let me know that one of her jobs is to check in with me on a regular basis to see how I’m doing.   It’s very new for me to allow myself to not only admit that I could use the support, but to accept it.  It’s one thing to look to your friends who “live the life” for support and quite another to accept it from an “outsider”.  But, to be honest, I’m tired, I’m spent, I’m weak and I’m willing to acknowledge that I could use the help.  I was told that I’m suffering from “caregiver burnout”.  Imagine that.

I’m incredibly thankful to have been given the opportunity to have Jack followed by this new pediatrician.  It’s clearly where we need to be – for Jack and for me.

I'm also incredibly thankful for all those who follow our journey and who care about my Jack.  Thank you for checking in. Thank you for caring.