Friday

The last couple of days have been a continuation of my previous post.  Holden has slept all but a couple of hours each day, and the hours he has been awake, he's been uncomfortable and unhappy.  The frequency of "good" moments are waning each day.  We stare at him constantly, waiting for him to stir so we can try to make him smile when his eyes first open.  We crave his warmth, his grin, his humor, and all the things we love about Holden.  We wait and wait.

During this journey, Alex and I each have our tougher, more emotional moments.  Tonight was a tough one for me.  We started to clear out some of the cluttered toys in our family room to create space for a small Christmas tree that Holden can enjoy each day.  It dawned on me that Holden hasn't been asking for those toys, and I sank deeper thinking of other things he's not asking for and things he is not doing anymore, and worst of all the things that he won't do anymore.  I realized tonight that we have already lost so much of our little boy, and it has happened so fast.  

Holden returned home from the hospital after his seizures on August 21.  He spent the next several weeks regaining his strength and even surpassed his pre-seizure status.  He started walking without help for the first time, walking from room to room!  He was stronger, more balanced, more comfortable and happier than he had ever been.  I was hesitant and cautious, but open to the idea that there was a miracle in the making.  His recovery from that episode was nothing short of  remarkable.  Alex and I felt the same but we never dared to jinx it by speaking of it.  Our Oncologist was actually interested in another scan to see if there was some improvement that might explain his recovery.  My, bone-dry, empty glass was beginning to fill just a teeny bit.  That all changed just a couple of days later when he woke in the morning and vomited.  We were too familiar with that sign, as Holden had been vomiting on and off for about a month prior to his original diagnosis before his first birthday.  He bounced back from that October 8th episode and had another couple of good weeks filled with plenty of happy moments.  Although he was becoming increasingly sick over the last 6 weeks, he has been been WITH us in a way that felt normal and familiar.  At some point during the last week, without us knowing, that changed.    

He is still with us today, but nothing about these days are normal and nothing is familiar.  There is no racing from room to room in his blue car, looking for packages every ten minutes, begging for a trip to Dairy Queen or the "cement mixer place," wanting to play is his camper, riding the tractor or mowing the grass together, hitting golf balls every which way, securing duck eggs in the coop, rolling in the bouncy house, sneaking candy when Mommy isn't looking, decorating the entire house with stickers, sneaking into his sisters' rooms while they are in Zoom school, sitting on the front porch making us chase balls, or even carrying his little cars around, one in each hand.  No, this is not familiar at all.  One by one, these special moments have been plucked away from us, and it was heartbreaking to recognize and accept this tonight.    

 

80 comments

  • This one really got me. Thank you for sharing. I’m here reading a little late but I’m hoping you and Alex have some peace among the chaos of these sad and dark days. Holden’s light lives on in you, and has left a foot print in all those who love him hearts …we all can be sure of that. Thank you Holden and family for that and for all your courage. I hope you grasp on to that light and each other to get you through. Y’all have done everything you could have done in which is and was best for Holden. I appreciate and love you guys more than you will ever know. Love from Arizona

    Jess
  • My heart and prayers are truly with you and your beautiful family. With all that your precious child is going through, he is so blessed to have the immense love you give him with the depth of your devotion. You are creating so many incredible memories and just seeing his sweet smile warms the hearts of all who view your posts. May God continue to watch over and bless your family .. so many are praying for a miracle. Much love to you.

    Ro
  • I’m sure my message is just like many bc Holden has touched so many loving ❤ ‘s. So many of us will NEVER be the same after hearing ur journey and seeing the video’s of Holden! He brought us all together ❤ and in one way or another changed us! We love our babies a little longer. Appreciate life a little better. And have prayed so incredibly 🙏 harder for a little boy who we never had the chance of hugging. Holden taught us so much and I for one am so grateful for the time shared and the love shown of pure true love and inspiration ❤ 💗 💕 from one BEAUTIFUL..caring..loving.. young man. He will never be forgotten ♥

    Terri Pesta
  • Holding you and your family in my heart and prayers.

    Allison stavaridis
  • Prayers and love for you all.

    Carrin Ramirez

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