It’s been a few days since the last update and not much has changed with Holden. Overall, he is sleeping a little more than he was a week ago. Today he was awake for maybe an hour or so in the morning and a total of two hours this afternoon/evening. He seems very comfortable and peaceful when he is sleeping. When he is awake, he’s not as peaceful, but usually munching on popsicles one after another. Popsicles were his comfort food throughout his treatment and once again he’s on that kick. He still asks for his Happy Meal and Big Fry, but he’s not eating much of it. We actually just ordered one at midnight and he was back asleep again before it arrived.
Holden has lost so much of his strength and it’s uncomfortable for him to hold his head up for extended periods of time. Most of his awake time is spent on the floor in his “cozy spot.” We added a little Christmas tree in the room where he sleeps and I finished up the Christmas lights in the backyard. I say “finished” but I’ll probably add a few more things as time goes by. I’ve found it a good use of my time, because I feel like I’m doing something positive that’s “for” Holden, in a way, while he sleeps his
Thanksgiving was a sad day. I can’t call it anything else and I didn’t expect it to be any different. It was what it was. While I do have plenty to be thankful for in my life, it was hard to acknowledge any of those things yesterday. Much like Halloween, anytime we have the thought of something being Holden’s “last,” it’s difficult to cope with. Today I can better reflect on the things I’m thankful for, one of them being the 3 and a half years that Holden has been a part of our family. He has brought so many smiles and so much joy to everyone around him. Those 3+ years have given me the chance to see what an incredibly loving, strong and devoted mom that Alex could be. Her love for Holden is unrivaled as is his own love for her. I’m thankful for that experience.
Holden has been the “little bother” to Parker, Ella, and Ava and I’m thankful to have witnessed the love they have for him and the unique bond that has developed between each one of them. In so many ways, Holden has completed my family, and for my other three children, who live in a world of split households, I think he has fulfilled a big part of theirs as well. I’m thankful for this loving connection Holden has created.
I’m also thankful for the tremendous amount of support that we’ve received from our family, friends, and so many, many strangers that we’ve never met before. Whether it was the constant love received from of our families, a meal train supported by our local community, or the fulfillment of Holden’s wishlists and wishes through our social media friends, I will be forever grateful for those that have made an effort to ease our burden.
Tonight before I could finish this post, I had the chance to rock Holden to sleep in the rocking chair, something he recently only allows Alex to do. That was the greatest 45 minutes that I can remember. No phone in my hand. No in the background. No fear. Just me and my boy rocking and whispering.