Friday, November 12 – It’s not the only thing

Today started with a bang, or a thud, or, more accurately, a splat. 🙃

Heath called Carrie’s phone a few minutes before 6am today (Friday).  His ostomy bag had filled and exploded all over him and the bed.  What a mess.  We jumped into gear trying to move him and clean him and the bed and change the ostomy bag and dressing.  It was chaos, but we are getting adept at handling these kinds of challenges.  In the midst of moving him we noticed his skin was pretty warm.  We had a few nice days at home, but Heath had been especially tired.  We were worried the neutropenic fevers would return and we’d have another bonus trip back to Duke, but were really hoping to avoid it.  But this morning meant we couldn’t avoid it any longer.  We took his temperature, shook our heads, and Carrie picked up the phone.  Before 7am Heath and I were in the car to see our friends in the ED.

A slightly complicating factor that we had to work through was the fact that Carrie had been planning to take Ella Brooks and Wilson on a quick overnight trip to see friends in Charlotte.  A change of pace and a little fresh air on a long weekend would be good for everyone’s soul.  Heath and I would have a quiet 24 hours and welcome them back on Saturday.  Should they still go?  What is the right choice?

While the immediate medical crisis of this cancer is the main thing on our minds, we’ve probably spent almost as much energy worrying about this season’s impact on our other children.  They love their brother and want him to be well, but it’s hard to know what to do and how to act sometimes.  Evenings when they pile in his bed to watch a game – even if just for a few minutes – bring Carrie and I so much joy.  While we can’t know what memories they will have of this time later on (and obviously very different for his 16 year old sister than his 8 year old brother), we don’t want them to feel like this was all lost time.  We know that they know that their parents are really tired and having a hard time juggling it all.  We’ve felt especially jumbled and forgotten a lot of silly things this week.  They’ll surely know how worried everyone was.  But I also hope they’ll know that we worked so hard to keep their lives going – none of this is their fault, after all.  We want to be present at their activities and support them with their friends.  Our own guilt at all we can’t do is also very much in play, we’ll readily admit.  We go back and forth and worry about that stuff a lot.  I suspect any of your who have been caregivers are familiar with negotiating these tradeoffs.  You do what you can, and try, desperately to make peace with what you can’t.

Underneath all of that is another important idea – while this cancer is horrible and the most important thing we are dealing with right now, it is not the ONLY thing.  The world goes on, and we want to participate in it as much as we can.  Grief in all of its forms has the ability to consume you, to shrink the world down so small.  And sometimes that’s okay, even necessary.  But we also know we can’t stay in that space too long.  We have children to raise and a crazy dog to walk and jobs we love and a world full of people, most of whom all have some joyful and pretty hard stuff going on in their lives, too.  We’re all in this together after all, aren’t we?

By the time you read this Heath and I will be settled in with our friends on 5200 for a few days.  Carrie and the other kids should be in Charlotte, and grandparents and neighbors and chipping in with the puppy.  My goodness, we can’t do any of this without the village.  My prayer is that they’ll not have too much traffic on that stretch of I-85, and will have a wonderful time with dear friends.  If we’ve been reminded of anything in this, its that the people in your life matter so much, and those relationships are worth every bit of energy you have for them.  People who you can offer love to, and can share the same with you.  On the good days and on the days when it feels like we’re stuck in quicksand.  So maybe that’s the point I’m rambling towards here as Heath naps beside me:  take some time for someone today.  It matters.  They matter.  And so do you.

And in the midst of that, take a moment to look up around you and receive some of that care from creation.  Our across the street neighbor has a tree that turns the most perfect gold this time of year.  When the sun hits it it glows.  We’ve got a newer maple trying to show off some red, too.

30 replies
  1. Marge says:

    I hope God’s handiwork with our surrounding natural beauty lightens all your hearts as it does mine. Prayers for Heath’s healing continue.

    Reply
  2. Katherine K Stanley says:

    Love, love, love ! And it is also the beautiful time of year with college football and college basketball !! xoxo

    the Stanleys

    Reply
  3. Fritz says:

    The juggle is always a struggle. Take solace in the many many many things you do and continue to do right! You are an amazing family unit! Peace and love to you my friend.

    Reply
  4. Sue McCaughan says:

    You are all in our hearts and prayers constantly. Thank you for keeping us “with you”
    Sue and the “Guitar Man”

    Reply
  5. Judie Waters says:

    You are going through a most unbelievable time and all of you will have vivid memories of this time, each from your own perspective. It will be a blessing if you can remember the joyful moments, the comic moments and especially the “God moments.” We continue to pray for the healing of Heath’s body and for all of you as you rise each morning and confront a new day of challenges with so much love in your hearts.

    Reply
  6. Nan and Bruce says:

    Thank you for taking the time to keep us all updated. You are inspirational to us. We are holding you close to our hearts.

    Reply
  7. Susan says:

    Blessings on all of you- in times of 20 things at one time, in times of all together and times apart, in times of worry, in times of laughter, in times of quiet, rest, peace.
    And the Lord will be with you every minute.
    Hugs.

    Reply
  8. Kitty Kelly says:

    Thank you so much for the updates so our hearts and minds know a little more specifically how to hold you close and pray. Much love to each of you five Tuttles.

    Reply
  9. Kristen Cole says:

    We are all in this life together. Your realness and perspective is a blessing. We are praying for you all to know and experience the peace of God even in these storms. Thank goodness He has special ways of showing us his awesome presence in things like fall leaves. Hugs to you all.

    Reply
  10. Karen Vandersea says:

    Keeping y’all in my prayers.
    So happy for those fall colors this time of year — what a glorious week it has been around Durham/Chapel Hill! Your photos were amazing.
    Glad Carrie & EB & Wilson made it to Charlotte; hang in there Chris & Heath on 5200. Sending so much love! ❤️❤️❤️

    Reply
  11. David Vaughan says:

    Chris: I continue to pray for Health and you all. I pray that you all sense the close presence of God’s spirit as you move through these days. Sending much affection to all. DV

    Reply
  12. Christie Masinick says:

    Thanks for the update. We drove down 85 towards Charlotte yesterday and it is so beautiful right now. Hope Carrie and the kids had an enjoyable cruise down to the grandparents. We will be thinking of you and Heath while watching the Duke game tonight. 😉College basketball on a Friday night is never a bad thing. Hope y’all can watch too.

    Reply
  13. Beverly Thompson says:

    You are amazing parents! As you care for your son and family, breathe and care for yourselves as well. Prayers surrounding you all
    Beverly

    Reply
  14. Diane Hill says:

    You two are doing an amazing balancing job. Your other two kids will be incredible adults with an increased empathy for all who struggle. Be sure to remember to take care of you two, as well. Lots of love!

    Reply

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