Wednesday 11/18

3:23am

Over the last several weeks, our nightly angst has become greater and greater, as we don’t know what to expect the next morning.  Tuesday night we were feeling okay as we went to bed, but Wednesday, Holden didn’t wake up until 7:00 pm, and when he did, he was unconsolable for all but maybe an hour.  

When he is in this mode, there is nothing that appeases him.  Tonight the fries were too short and the ends were too pointy.  The orange popsicle wasn’t juicy enough and the green popsicle was too juicy.  His oldest sister Ella was banished to her room and I still don’t know what she did wrong this time.  Repeatedly he tells us all that he doesn’t love us.  This may sound like it stings, and it used to a little bit, but we’ve somehow become accustomed to it, and of course, we know he doesn’t mean it.

Holden did manage a couple of smiles before the night was over.  Ella made her second attempt to renter the room, this time successful due to her willingness to take over as the family room jester.  She held his attention for a bit and joined in the popsicle party.  I treasure those moments as much as my own, particularly because Holden is a little harder on them and I’m not sure his insults roll off them the way they do for Alex and I.  Sibling love is a wonderful thing. 

Holden was finally zapped again by 10:00 but we had an unusually difficult time getting him relaxed enough to fall asleep tonight.  Typically, when he hits that wall, he passes out pretty quickly.  Tonight he was fighting it restlessly and the meds we have for this weren’t helping.  Alex finally calmed him down around  midnight in the rocking chair.  No love for me today so I’m once again steeling some while he sleeps, which is my incentive to sleep on the floor.

This nightly angst is in full effect right now but praying for a smile in the morning and hoping I don’t get socked in the mouth for sleeping too close or smelling bad. 

26 comments

  • Muchas gracias. ?Como puedo iniciar sesion?

    cozciusicb
  • Muchas gracias. ?Como puedo iniciar sesion?

    ekbldbcwrf
  • I was just reading your post from Wednesday 11/18 and while of course Holden has since passed away my most sincere wish for you is that with the passage of time the really painful times diminish front and center in your memories and only the most splendid of times are what you remember most. ((Poor boys pain must have been excruciating combined with lack of oxygen to his brain makes for very hurtful bazaar accusations and heartbreaking explosions.)) While we have never crossed paths this does not mean my heart does not ache for your loss because it does. I can not tell you how very sorry I am that in your lives you had to take this journey with your precious, beloved son Holden. I wish I could take these moments from your memory somehow…I mean this from the depths of my soul💙🕊
    May the sun shine upon you and dry your tears and may God grant you strength, courage and peace…

    Susan
  • Like so many others I have fallen in LOVE with your family. All of you. Last year on December 3rd a friends son died from a brain tumor/DIPG. Watching Holden and Tessa has often been the highlight of my day. Their fighting spirits and amazing families showing poise and grace during the most difficult time in your lives. I can’t helped but be extra worried about Holden today after hearing about Tessa. I know that you’re just being the loving parents you are and are soaking in every second possible. I pray for you all everyday and will continue to be here always you support your beautiful families 💛💛🚛🚚⛳️⛳️

    Monique Reyes
  • Having personal experience with losing someone close to me to childhood cancer, I know how hard it hits when we lose someone in our circle.

    After hearing the news of Tessa today, I wanted to make a video in her honor . but I was hoping to give some information so we can continue fighting Tessa’s battle for her…. for a cure for other children like her & a miracle for Holden.
    People aren’t aware of how small the percentage of resources goes into pediatric cancer. We need to find a cure to beat this horrible beast.

    Right now I’m battling with adult cancer in my family so I’m caught up with research on those specific cancers…. but I wanted to share something that could help with spreading awareness for childhood cancer. The babygirl that I lost, that was close to me, lost her battle with ewing’s sarcoma at 17 ….so I’m not up on recent information. I was wondering if you had a suggestion of what people can do to help directly with resources to help with finding a cure, organizations that help directly with care , pain management or especially treatment TRIALS etc. I was hoping that through the tears we can do our share to help. Even if it’s just writing a letter to legislation. If you have a suggestion if information I could share on my social media, please let me know.

    I think of Holden all day …. every day…. praying for a miracle ( & I don’t pray usually)

    Cathy

    Cathy

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