Wednesday, November 21, 2012

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.


Anonymous said...

I appreciate the decision you made for Jack. I'm sure it seems counter intuitive to your usual mode of operation. I really hope that you continue to be supported as a family by this new team of caregivers. You are on my mind and in my prayers.

I'm so glad that Jack is stable right now.


Sarah said...

Sweet Ann, from our many chats over the years, I know and understand how truly difficult this transition is for you. I know how exhausted you are...not just from physically caring for Jack for the last 14+ years, but all the emotions it has brought in trying to give him the best care. I am and continue to be inspired by you in every way. But knowing we are so much alike, I just want to reassure is ok to take that help. To lean on someone else. It is ok to feel the weakness and exhaustion you feel right now. Let someone else be that pillar of strength for a while. All Jack needs now is for you to love him....which is the easiest job in the world...and nobody can do that better than you. Sit back and savor those moments. I love you and am always here for you. Hugs to Jack!

Susan said...

First I want to say do not judge yourself harshly. Show yourself the same kindness you would if a dear friend was in your shoes . If you were looking at yourself from the outside wouldn't you say what an amazing job you have done and are doing? We all respect you so much. Please don't ever stop being honest (or at least as honest as you can on a blog) or stop sharing your journey.

Second for what it's worth I think you made the best decision for Jack, in chosing palliative care. Knowing you, I'm sure you've given it a lot of thought and no one knows Jack like you.

Lastly, I'm glad you are getting some support from real face-to-face local people. How could you not be burned out? Honestly you should know that I think most of us are truly amazed at what you juggle and how well you do it. We love Jack and you and will do whatever we can to support you through the next phase.

Much love and hugs my friend.

Christy said...

Hell Ann, I'm burned out and I've only been at this for six years - and I haven't had to provide the level of care that you have! In my eyes you're the freaking Energizer Bunny! You're due for some rest and help in the management of Jack's care.

And for what it's worth, I think whatever decision you make regarding Jack is the right one. You know him best and you've done an outstanding job so far. And I will never judge you.

Stay honest, my friend!

ssouth said...

This must be a really hard transition, Ann. You are doing an amazing job. Remember the role of a great care giver is to first do no harm. Love to all. Call soon if you feel up to it.

Sarah McCarthy said...

While we have never met, I have been reading your blog since I met your friend Jenny in STL, I feel like I know you. I cannot imagine the emotions that you go through on a daily basis, but with all that I have read, you are ONE INCREDIBLE MOTHER!!! You know Jack better than any doctor ever will, therefore you know what decisions need to be made. You are a wonderful person! I pray for Jack and your family and will continue to do so.

Dana said...


You have been a pillar of Strength for all of us as well as for Jack. I too am glad you are getting support from someone face to face, there.

Thank GOD for this new doctor who seems to understand where Jack is at, at this point.

No judgements here. You are doing what few could and can do. You are an awesome caregiver!

So glad you are not giving up sharing this journey with us. I draw strength from you.

We love you. Laneah often asks me how Jack is doing as we pray for you all.

HUG that boy tight, and
Take care my friend!!!

Anonymous said...

as stated in your post: this is YOUR journey and Jack's. It is so very clear in your writing how much you love this child. Anyone who would critisize you for decisions you make or may make has no business reading your blog! I appreciate your honesty and can imagine how hard it is for you to present it to anyone on the other end of a computer. Jack is so lucky in that he has known nothing but love from his family.

Anonymous said...

i've wanted to leave you a comment, but each time i do, i don't seem to have the right words to put my thoughts in order.

basicly, i really admire you. i know, often times, life doesn't give you a choice of course...but you've made seemingly amazing choices to treat jack with respect and dignity, something i've seen many forget.

i admire you also for sharing your family's story. i'm sure it's not easy to put everything out there, but i enjoy hearing about jack and your entire family.

many hugs to you!