Wednesday 11/18


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. 


  • We love you Holden 🙏🙏💙💙🎗🎗

  • I look anxiously every day to see how little Holden and family are doing. I know either of you parents would trade places with this awesome kid of yours in a heartbeat. You are all in God’s hands. There is power in prayer and you are being lifted up by so many. Praying for God’s will, praying for Holden to feel no pain, praying for your hearts to be strong…

    Cindy Schrum
  • I have been following your families journey so vigorously that it’s hurts me so so bad! Thank you for allowing myself, and the world into your sacred place. Holden has touched my heart and so many others… I find myself holding my breath while waiting for updates and then I remind myself that it’s your family who is really tiptoeing through the days. The strength you guys exude is amazing, Thank you ❤️

    angela gonzalez
  • First I wanted to let you know that I am praying for your family. I send extra prayers to your children, I know they feel the pain twice as hard cause they feel for Holden and they feel for you guys.
    Second Holden the lease know your a special boy and that we all love you so much. I know it’s scary and your hurting but please know we all love you so much. Get as much rest as you need.

  • 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 Bianchi

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