Weekend Update

This weekend was filled with quite a bit of sadness.  Holden slept all but a couple of hours on Saturday and Sunday.  We can tell he wants to feel better when he asks for things that make him feel normal, but he's just too tired and weak to enjoy anything.  He asked for his McDonalds several times, but fell back asleep each time, before I could bring it home.  He wanted cupcakes tonight, but fell asleep before they arrived.  

He had a few special moments where we could see and hear the Holden we know best.  Earlier tonight, when I was laying next to him he looked at me and called me a "big shit-head."  He smiled and we joked around for 5 minutes or so.  It felt good, but it didn't last long enough.  

He's finally enjoying some cuddle time in the rocking chair that he asked us to bring into the family room.  It's the chair that Alex used to nurse him in as a baby.  The gray rocking chair has been in the basement and he hasn't mentioned it for over 2 years, but last weekend, to our surprise, he asked for it, so of course we brought it up.  Since he started sleeping on the family room floor, we haven't been able to cuddle him like we could when he slept in our bed.  This weekend, and for a good chunk of today, he wanted Alex to hold him on the chair.  Lucky her.  This made her so happy.  So far, Holden has only wanted Alex to hold him, but sooner or later, he will let me have some of that precious time.

It hit me this weekend that I've spent two and a half years worrying about this stage of Holden's disease.  Even on his best days, the dark cloud of "worry" was omnipresent.  If I could do it over, I would live everyday as if a miracle was being granted and enjoy every moment without this fear.  We lived that way some days, especially over the last year, but not all.  It's hard not to worry, but I shed many tears over the last two years, almost always alone when nobody was watching, and many of them were strangely on Holden's better days.  Had I known then, what I know now, I would have saved them all, for now.  These are our darkest days, and it's hard to see any light.  Already I am deeply missing our "good old days" and there is nothing that can ease this pain right now.  What makes it worse is that we were living the "good old days" just a couple of weeks ago.

 

     

27 comments

  • Chad and Alex I want y’all to know that y’all are in my thoughts and prayers everyday. Holden is the most precious gift from God. I have followed him for awhile and I have shed many years and laugh just as much. I can’t even imagine what y’all are going through.. I wake up every morning and check on him to see if he is awake and I check several times thru out the day and at night before I go to sleep. I am hoping for that miracle that Holden needs. That precious smile and beautiful brown eyes and that sweet little voice. He is so comical I watch several videos that I love over and over and it’s when Holden singing “He was going to whip your ass” and the other is when he said “Holy shit look at all the packages” and I love hearing him say I love you in that sweet little voice. I will continue to pray for God to comfort y’all in this time of need.. I pray for his sisters and brother I know this is hard on them too. Sending hugs and prayers.

    Kimberly Baker
  • I miss seeing his smile & hearing his voice. My heart is hurting so much for you & your wife I can’t even begin to imagine your pain. I am so very sorry. I check several times a day for updates on Holden. I have come to love your little man and he holds a good chunk of my heart. I pray continuously for a miracle for Holden. Holden has captured alot of hearts. Thank you for sharing his days with us. #Holdenstrong 💙🙏🎗

    Patricia Duncan
  • I am so sorry no parent should go through this with there baby. Yall are doing a wonderful job with him. Thank you for sharing your son with us and his story. I pray for yall everyday.

    Kristine McCoy
  • Holden and your family have helped so many people I can’t express how sharing your story has been such an impact in so many lives . Thank you so much. Everyday we think of all of you especially Holden. We pray everyday . We talk to Kavon about a super warrior named Holden and how amazing he is. We have been blessed to be part of this . Again thank you so much

    Anna
  • Praying for the three of you. I had never met two more incredibly strong and loving parents until I began reading about the love you blanketed your beautiful strong warrior with. The love, the kisses and hugs, the trips to McDonald’s, You both are so amazing. I love you, the world loves you and I will continue to pray for you. We love you Holden beyond words. Sending Hugs and much love to the 3 of you 💙💙🤗

    Megan B Gamelin

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