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. 

23 comments

  • 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
  • I’m sorry you’re family is going through such a hard time. I can’t even fathom the feelings you all must have. Holden has captured my heart. I look for updates several times a day on Tik Tok, Instagram & Facebook. When there’s not a new one posted, I pray for sweet Holden to be healed & that everything is ok. Holden has been a light in my life when I needed one so badly. My sister passed April 9th & I still feel like my heart is being ripped out daily but seeing Holden makes me smile, sometimes laugh and remember that life is precious. I have never met any of you but yet I truly love your son. I believe he’s an angel… just like you stated on a post I recently saw. He’s definitely my hero and a true warrior. I’m sorry he says he doesn’t love you. Even though you know he doesn’t mean it, it’s hard hearing your little one say those words when all you want is to tell him how much you love him repeatedly. I don’t know if that’s something common with a child in his situation ?? but regardless it’s not easy I’m sure. Do you by chance think when he tells his siblings he doesn’t love them it’s because he’s frustrated that he’s not feeling good and they do? I’m sorry if I ask a question that bothers you. I understand if you don’t want to answer and I respect anything you don’t want to share. I do want to thank you for allowing me to be a part of Holden’s journey & for sharing him with me and others. He is so loved! I hate hearing that he wasn’t consolable & had a hard time getting to sleep. I will never know how Holden feels but my heart aches for him. I know it might sound odd but I’d give my health for Holden’s. No child should ever have to endure what he has. My children in who Holden is & watch his videos. My 7yr old autistic son Haydn, says he knows Holden from heaven. Maybe he does 🤷🏻 Who am I to question that?? I know from what I’ve seen and how I feel about Holden, I definitely believe he’s an angel sent with a purpose. He’s touched so many lives. You & your wife are terrific parents. I admire you both greatly! I cry daily for you all and that’s ok because crying can be therapeutic at times… right?! Well, I hope! I look forward to reading your next entery and seeing Holden on Tik Tok. Hope you all have a good night! HUGS from South Carolina

    Kari Johnson
  • Holden has stolen my heart, I never knew how much I could love you all with never knowing you or meeting you, but it honestly has happened. I check on Holden many times throughout my day, there isn’t a minute that goes by that you all are not on my mind. I laugh with you, I smile with you and I cry with you. As a Mother & a Nurse my heart breaks for you. I only wish more people in similar situations were more like you and your family and enjoyed the time we are blessed with and celebrate the person, and lived everyday as if it were the last.
    I prayer many times a day for a miracle for Holden and your family. You all have a very special place in my heart, and I thank you for sharing Holden & your family’s journey. You all have made the world a much better place. Sending much Love & Prayer..
    ♥️ You Holden

    Jennifer Cooper
  • I’m praying for you guys ❤️❤️

    Juliana

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