The Fight

This day three years ago I was holding Nolan with no idea what the future held. 

This day two years ago I was holding Nolan in my arms as we selflessly agreed it was time to let him go. 

That reminder that time is precious, and the future is never guaranteed is certainly a constant in my head.  As if I needed any more reminders…the last few weeks with Landon have certainly made that clear all over again.  Time is precious.  Love is eternal.  Grief is endless.   

Maybe because grief is also endless, maybe because “moving on” is such a silly phrase, maybe because losing a child isn’t something you recover from…I’m proud of the last two years.  They have been hard.  Very hard. Far harder than I’m willing to be fully transparent with you about.  

But I’m here, two years later.  And I feel stronger than I ever thought I could.  I’m saying this out loud mostly because I’m friends with lots of moms who have lost or will lose their children.  Our online community cheers each other on, and we watch each family fight, sometimes winning battles, sometimes losing the war. 

If you’re reading this and have experienced a loss, just because the war is over doesn’t mean you are no longer a warrior.  You’re still fighting every day.  You’re still working hard for every smile, every laugh, every ounce of normal you feel.  You’re fighting for your family, for your marriage, for your other children perhaps.  You’re fighting to be at work, or to care about your own health.  You’re fighting for your faith, or to remember what matters to you.  Some of you had to fight to get out of bed this morning.  

Maybe this is an odd thought for a parent to have for a child.  But this morning when I was reflecting, I found myself hoping Nolan is proud of me.  Proud of how I’ve cared for Landon.  How I’ve advocated for Isabella’s diagnosis and care.  How I’ve loved Karson.  How I’ve tried to do what is best for our family.  How I’ve taken care of myself.  How hard I’ve fought.  All while proudly protecting a Nolan sized hole in my heart.

Yes, grief is endless, but love is eternal, and thus so too is the fight.    

2019 Fundraiser – AMA

We’re still fundraising in memory of Nolan and in honor of Landon. Tomorrow is a somber anniversary, so today felt like a good day to share some good news.  

We’ve already raised more than $7,500 with more donations pending.  And YOU can still participate!  I still think we will hit our $10,000 goal! 

Our benefiting charity this year is Awakening Minds Art (AMA) located in Findlay Ohio. Awakening Minds Art (AMA) is a nonprofit that provides therapeutic, educational and developmental programs to all ages and abilities.  Check out their website to learn more!

If you would prefer to donate to AMA directly, please use this link

If you elect to write a check to AMA directly, please write “Landon Rinker” in the memo and mail to:

Awakening Minds Art

317 S. Main St. Findlay, Ohio  45840

 If you prefer, you can send funds to me (Ohio), my mom (Kentucky), Justin’s mom (West Virginia), or Tonja Sheets and Vic Ochs (Illinois).  That same crew has bracelets to give to donors as well.  If you don’t already know how to reach out to one of those folks directly, then the online link or AMA address may be perfect for you! 

 We’ll continue to tally donations with a plan to announce our total by Landon’s upcoming 6th birthday. 

With your help, we’re doing AMAzing things!

 

Where you belong

Regarding Landon – a lot has happened since my last post.  I spent much of the last week talking with the advanced care team, the attending physicians and various others reviewing Landon’s health the last 10 days.  The crash on August 8th does appear to be related to his body’s handling of the wean, mostly driven by the fragile state of Landon’s systems.  We examined the wean and the days leading up to it closely.  I asked for information for his drip rates, as well as any bolus meds he was given.  We looked at how things were administered, the rate at which meds were switched, and the pace at which he was weaned.  I learned about WAT scores, and how to use Landon’s condition and his vitals to measure the impact the medicines (or lack thereof) were having on him.  It’s been an educational week for me for sure!  No one did anything “wrong”, I don’t want to imply that.  Landon is just…complex…and has to be handled in his own unique way.  We were all learning what that meant in this case.  The team worked closely with me to come up with a much slower wean plan.  We talked about how his thresholds are lower, his warning signs more subtle, and his changes sudden and unpredictable. 

There was great teamwork involved and I felt heard and respected throughout.

I will spare you the details (but if you’re ever in a similar position I have tons more to add!)  and just boil it down to a few high level points:

  • Landon is fragile
  • Landon responds easily to medicine changes, and his vitals can be volatile
  • Taking certain medicines is hard on Landon
  • Weaning off of certain medicines is hard on Landon
  • All of this is hard on Landon
  • Landon was in the care of one of the best team’s I’ve ever worked with, at a world renowned facility, and even still…
  • Landon crashed, for two different reasons, twice in the last month and recovery was difficult.  We got lucky that the arrest didn’t cause more obvious permanent damage.
  • We don’t want to ask Landon to have to work so hard to come off of the breathing tube again. 
  • I promised him we would fight hard, but also that when the time came, we would listen and follow his lead. 

With all of that in mind, I made a plea to allow Landon to come home on hospice.  I felt sad requesting it, guilty at times, and was concerned the decision would be viewed as hopeless.  Or as giving up.  But I want to assure you we are still trying very hard.  We made it home early Saturday and I’ve been busy ever since. I’ve devised tracking sheets at home, and am actively managing Landon’s care, along with his nurse, and along with a growing team who is available any time.  We’re doing our best to manage his comfort, but also his health.  A Doctor is visiting Friday to check in and talk about some potential positive changes we can try.  I remain hopeful that Landon’s days are many, but even if they are not, he is where he needs to be.

If I had any doubts about whether or not this is the right path, they were immediately erased when we were able to get Landon safely in to his own bed.   After a somber start to the home going, including low temps, heart rates, blood pressures, and respiratory rates, Landon had a brief moment where he was in a nice comfy middle ground, and this oh so special sight, told me he’s happy to be home.