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.