The Lenten Luck of a Serious Diagnosis

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Between waiting for calls, taking calls, sending messages, checking for responses, and general stewing our Tuesday was pretty much consumed by a black cloud of bleh.

Not sure what I mean?  Let me bring you up to speed.

Cee had an MRI on Friday, and the results aren’t great.  The aren’t even good.  Or so-so.  The results are bad.  Pretty much the results are bad.

We’re planning another trip up to Mayo the end of next week for more appointments, and depending on those appointments we might be looking to take a trip to Cincinnati, which boasts the best pediatric rheumatology department in North America.  (Not sure how many pediatric rheumatology departments in Belize were in the running, but our doctor said “in North America” so we’re just going with it.)

As I mentioned earlier this week, our journey with SJIA is marked by questions.  It’s doubtful that we’ll have answers even after next week, and it’s likely that we will have some tough decisions to make.

 

Although I am saddened by all this, one thing gives me peace:

Cee is not in constant pain.  If she isn’t walking, she’s relatively comfortable and cheery.  As long as she keeps those hips stationary (which she’s good at) and has a book, she’s happy as a clam.

She seemed pretty non-nonchalant when I told her that her MRI results weren’t the best.

Cee:  Why were you crying on the phone, Mom?
Me:  Well, I was talking to Grandma about your MRI results.
Cee:  You mean, about the needing to have surgery thing?
Me:  (choking back more d-a-m-n tears)  Yes.  I had just hoped you wouldn’t have to go through all that.
Cee:  (shrugging)  Meh.

And that was that.  No tears  (from Cee).  No arguing.  Just matter-of-fact resignation.

Now that Cee can read, she’s able to go anywhere and do anything through the pages of a book.  That’s not a cliche.  That’s her real life.  So as long as we can keep her in books, she’s up for anything.  Her acceptance of whatever life throws at her is admirable.

 

I’ve had some time to discern my thought from Mass this past weekend that Cee is not going to get better.  I don’t know the scope of that statement;   I don’t know how “not better” things are going to get.  This could be the worst of it.  Or things could get much, much worse.

Really, it doesn’t matter all that much.  I’ve always known that SJIA has the same mortality rate as childhood leukemia.

I might only have one more year with Cee.  I might only have two more years with Cee.  Certainly I hope for seventy more years, but who knows the reality?  Not me.

 

I can’t afford to waste time.

 

I’ve mentioned my love-hate (more like hate-hate) relationship with facebook.  That’s where many people follow blogs, so I feel obligated to be there.  But whatever.  I’m done with it.  If I’ve only got a year, or a handful of years, or even a decade, why am I spending any energy on kitten memes and angry tirades (from both sides!) about Trump?  My life will go on without them.  My life will be full and happy without them.

Consider this a public service announcement:  If you follow me on facebook, you might want to subscribe via email (check the sidebar) or on Bloglovin in order to get updates.

I blog for me.  It’s like (mostly) free therapy that comes with a community.  Earlier this winter I dialed back from participating in ALL THE LINKUPS EVER!!!  in order to be more balanced.  Well– I’m going to dial it back a little more, with only occasional library haul posts and no more Just Enough Info.

I also blog for other families– families who are suffering through Mass with littles, families who are facing a diagnosis like ours, families who are open to life even when it’s not easy.  Because I know how isolating all those situations can be, I will keep blogging.  I will keep sharing the challenges of my family.

But I can’t afford to waste time checking to see what my cousin’s neighbor’s ex-boyfriend’s third grade teacher is up to.  (PS–If you are my cousin’s neighbor’s ex-boyfriend’s third grade teacher, I’m not actually stalking you.  It was just an example.   Actually– how have you been?!?!  Would you like to get coffee sometime?  Do you have an insurance guy?  I know someone reliable…wink wink)

I guess that makes me lucky.  The unfortunate truth of being a parent is that we don’t know how long we’ll have with our kids.  This is 100% true of all parents.  Are you a parent?  It’s true for you.  It’s true for me, too.

What makes me lucky is the ongoing reminder of this truth.  I *know* I can’t afford to choose selfish things over spending time with my kids.  Not everyone else has realized this.  Not everyone else gets a reminder every month when their child goes to the hospital for an infusion that lists “death” as a possible side effect.  I’m not saying I’m perfect at making the right time choices (ha!), but that ongoing reminder sure does help to provide some marginal success occasionally.

Wednesday is the start of Lent.  “Remember you are dust, and to dust you shall return,” we hear a hundred times as we wait in line to be marked with a symbol of that truth.

This year more than ever, I accept that reality.  I am going to die.  So are my children.  And I’m not going to spend time doing dumb stuff.  Okay.  That’s not true.  I’m going to spend LOTS of time doing dumb stuff like playing wolves and reading every Gerald and Piggie book ever published.  You know what I mean.  I have an idea of the things I do that are genuine self-care (like reading awesome blogs!) and the things that are time suckers (We are not in the market for a dog, so there’s no legitimate reason to browse the Humane Society site.).

 

This Lent I’m also going to work on embracing my family’s mortality.  (Eesh.  That sounds weird when I put it into words.)  Seriously though, I want the idea that today might be my last day with Cee or the others to shape my choices.  Rather than it being a morbid thought, it’s a joyful one.  I am free to cut through the clutter in my life and focus on the heart of what brings true happiness.

I don’t exactly know how that will look moving forward.  Probably some more staycations and Yes Days.  Hopefully less yelling raising my voice.  And lots of poop jokes.  (Moe will be four next month so the punchline of every joke is pretty much “poop.”)

 

I had Cee write the words on a bit of poster paper  so I can see them all throughout Lent.  Her kid spelling = <3

 

Yes.  I am dust.  And I’m going to spend as much time as possible with my loved ones until I return to it.

 

 


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17 Comments


  1. // Reply

    This is so beautiful and very true. Thank you.

    I have a lovely friend at my parish with a severely disabled son who could continue living or could die, and if things go awry with his system, he could go from normal to dead within one day. So, I’ve watched this dear friend of mine live with this sword of Damacles hanging over her head for years and I’ve realized that she simply knows the truth that most of us don’t think about: any one of us or any one of our children could be dead by the end of today. But my friend has the graces from God to know it, learn to accept it, and live her life better than most of us (and she is amazing). The rest of us bumble about blindly under the delusion that none of our children with predecease us and we’re all going to live till our 70s when we die in our sleep.

    I love your meditation and I want to embrace it, especially after the last two days in my home of terrible anger on my part.


    1. // Reply

      Thanks for sharing, Katherine. <3


  2. // Reply

    I’ve been reading your posts these past few days and praying. You’ve come to an amazingly hard insight, but (if I can be so bold to say this) from the sound of your post, I feel like I hear the hope of joy! (Is this accurate?) A very holy and blessed Lent to you!


    1. // Reply

      I think so. If I already know how this is going to end for all of us (death), then there’s no sense in indulging my worries and anxiety. Is it odd that there’s peace in that?


      1. // Reply

        I hope not? It must be why God so often asks us to “number our days” and “consider that we are dust” (etc.) Better to make peace with it now and live rightly.


  3. // Reply

    Your words are so beautiful, and so darn…real. I have been crying, on and off, since your last post, for Cee, and for you all, and for the reality that love, while beautiful, comes with this pain. Thank you for the reality check. My complaints seem trite. We are dust, indeed. Thank you for the reminder that none of us has tomorrow guaranteed, and that Heaven truly awaits us all. May this lent I find, like you, that God is not in the future worries, not in the past regrets, but in the present. In living in the present, may we find His joy.


  4. // Reply

    I want to thank you for the reminder but I’m over here crying. You are so raw and honest and I can sense your fear and your hurt. I am sorry you and Cee are going through all this but I am so inspired by your bravery to face your fears head on. I will be praying your family throughout this Lenten season.


  5. // Reply

    Alicia, your writing is beautiful and true. Thank you so much as it helps me to focus more on what is truly important. It’s so interesting that we all carry around in ourselves each day these very deep thoughts on life, love, and eternity, but they sometimes don’t become very real for us until we take a few moments to write them down.

    My wonderful Grandma Mitzi (who had 9 children, worked for 40 years for the Bishop, and passed away when she was 81) used to sometimes say with a little smile, “The first hundred years are the hardest!”. She definitely had faced hardships in her life, but embraced them as part of God’s plan with a quiet joy and trust. She also treated everyone with compassion and love. I never, ever knew anyone that had an unkind word to say about her. Of course, I’m trying to learn from her example in my own life, but if I even get halfway there, I’ll call that a success.

    We are praying for you.


    1. // Reply

      I love that quote from Grandma Mitzi! I’m going to have to start using it myself. 🙂


  6. // Reply

    I’m so sorry about Cee. Your thoughts are both heart-wrenching and beautiful and I thank you for sharing them. I will keep your family in my prayers!


  7. // Reply

    Alicia, I am glad that you are writing, and also I agree with you about Facebook. I hope you find some answers about Cee and I will be praying for all of you. I wish i could invite you over for a cup of tea. Consider this comment a virtual cup of tea. 🙂


  8. // Reply

    I am so sorry. So, so sorry. My prayers will be with you. I get it, I do. Especially about their nonchalance towards something that is so… “big” to us. Our daughter too, is facing surgery, a type of ostomy. The doctors are still deciding if it’s the right move. There are risks. Part of me wants to just get it done and over with so hopefully we can achieve a better quality of life. The other part of me is terrified of the very idea of it. But she is completely okay with it. Six years old, and she is so “done” with all of this mess, that she is asking for a major surgery. Like your daughter, she’s in chronic pain, but not constant pain.

    I also understand the need to write, to blog. It’s why I blog. It’s therapeutic. It allows me to get off my chest what sometimes I don’t feel like I can necessarily say to others. Honestly… often, the words don’t come out right anyways. I do better when I can write it out. Other times it’s just a good distraction.

    While thankfully, we are not facing mortality rates like you are with our daughters issues, at the end of the day, she still has her risks as well. Any number of things can happen during and after an ostomy surgery, or with her genetic disorder that they now think she has. I’m realizing the same thing you are: I need to let go of the time suckers. You know, I used to justify them saying they were my “break”, they were “my time”, they were a chance for me to let go of the stress and just allow my mind to become blank for a period of time.

    But I don’t want to lose myself from my kids, from her. Like you, I realize more than anyone that life is uncertain: I mean, she was in heart failure from day one and we dealt with the realities of open heart surgery and mortality rates etc… We realize how fleeting it can all be. And yet, somehow we can still forget.

    Like you, I don’t want to forget any more. I want to be present. I want to enjoy our days together. I want to focus on each other, and to do as many silly, fun things as we can. I want to spend days in our pjs laying on the couch watching mindless cartoons and laughing together eating popcorn. I want to hold her and cuddle her. I want to give more of my time to my son, who so often gets less attention because of her needs. I want to color with him, and learn to play that crazy Pokemon game with him. I want to worry less about trivial things that ultimately do not matter. I want to focus less on the past or the future and instead just focus on the here and now.

    Thank you so much for writing this, I needed this reminder.


    1. // Reply

      Yes! So many yesses to everything you wrote. Thank you for taking the time to share.

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