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. 

24 comments

  • As I have mentioned many times, God has laid Holden and All of you as well on my heart so heavily. He is such a sweet little boy and it breaks my heart as a Mom and Grandma to see him go through this. Chad and Alex, You both are such amazing parents and all your children are lucky to have such beautiful, Loving and caring parents. Alex, I know that Holden is your first and what a gift and a miracle he is to you. I hold you extra high in prayers. We never know what God has planned for us, rest assure, something great will always come from him.

    I pray for peace and comfort and always for a miracle! I am sending Hugs and Love! God bless you all!

    Stacey

    Stacey Bianchi
  • I have been deeply affected by following Holden’s story. You have done such an amazing job documenting and sharing his life, all of us feel like we know him. When I think about what kind of grief I am experiencing from the peripheral, I then plunge into a deeper level, thinking about your heart break as his parents. I think about him all the time and am always checking in to see any updates you may decide to post. My babies and I pray for all of you. I’m grateful for him. Thank you for sharing such a precious, personal gift with all of us.
    My son is autistic and he has very similar symptoms that Holden had in the beginning. I’ve been attributing them to sensory issues related to autism. Holden’s story opened my eyes to that possibility. I just made an appointment with a pediatric neurologist to address them. I’m sure I’m not the only one who took a closer look at their baby’s symptoms that were questionable. Praying for peace and comfort for all of you. Hugs and much love from NY ♥️ 🍟🎗♾

    Theresa Petroski
  • You’ve given us all,who care so much for your family, another glimpse into this disgusting disease. Sending lots of love and prayers to you all. Holden for a day when his French fries are just right. And to you all to have skin like a duck and let it roll off your back and remember that even these days are imperfectly perfect with our warrior. 🙏🏼💙💛💪🏼

    Christine
  • Thank you so much for the updates on Holden. We are constantly checking in and our sadness and heartache can obviously be incomparable to yours. We pray for as many “good days” and perfect fries for you and your family!!

    Jillian T maloff
  • I think about Holden and all of you so much throughout the day. You are an amazing family and Holden is a strong, amazing, sweet little boy. Praying so hard for Holden and for a miracle. He has such a big part of my heart and we all love him so much. I hope he has a better day today.. praying for more energy, more strength, healing, more smiles and will always pray for the miracle that he deserves so much. 🙏🏻💙🙏🏻💙

    Jillian Sidoti

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