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

  • Sending you all hugs. ❤

    Eileen Bigornia
  • I like many others have come to enjoy and love your little boy and his sweet personality. I continue to pray for him and your family! I know that God has a plan for us all, and he’ll bring you comfort. As a parent, I can’t imagine the way you are feeling and what you’re going through! I keep praying for a miracle for your sweet boy and for you’re family!

    Ramon Prieto
  • Try not to be so hard on yourself. Even if you were able to relive the past, I’m certain you’d still be consumed by fear and worry. You’re only human. I’m thinking the terror and dread for this stage is a natural response. Be here now. Love him now, caress him and just savor each moment you can rest your eyes on him. Please take care of yourselves. Drink water; if you can’t eat, try soup or clear broth; maybe bread or crackers. Did I say drink water? Breath, even if it hurts like hell. You need to keep your strength up for the days ahead.

    Robin
  • Your son has captured a piece of my heart God bless you and your family

    Rhonda Fischer
  • Alex and Chad, I have no words to ease your pain. I can’t begin to imagine what you are going through. I downloaded TikTok which I had never heard of prior to the Pamdemic. I was really feeling sorry for myself and the TikTok of Holden coming home from the hospital showed up, all the packages at your front door. That is when Holden grabbed a piece of my heart. I fell in love with him at that moment, that smile. I knew then that feeling sorry for myself was selfish. I knew I needed help getting out of the funk I was in and Holden was there for me. That’s when I started checking on him multiple times a day. I posted that TikTok on Facebook to rally my friends and I know along with me we started sending gifts from Holden’s wish list. From that week on I checked on Holden multiple time’s a day, I checked his wishlist, and sent him a present every week, after seeing how much he likes checking for the Amazon truck. I just stopped sending when I saw you weren’t adding anything. It was a sign. You shouldn’t have to endure this and no child should have to endure it either . I just received my bracelet and my hoodie. Holden and you will forever hold a place in my heart. It is tearing me apart that you have to go through this. I hope you have some more days of a smiling happy Holden. I will continue to watch for updates. I will continue to pray for your family. I would love to do something for your family as I’m sure you are focusing all attention on Holden now, as you should be. Please reach out to me as I would like to send you dinner one night. It is a amazing what social media can do. I also messaged you, I don’t want to be a bother but I would be honored to do this for your family if it can be of help. For now I will continue to hope for better days for all of you. You are the most amazing family. Oh, I forgot to mention that Holden and I have something in common, we both love McDonalds. Give my little super hero a big hug!!! I will continue to check your social media hoping for more smiles.

    Sending Love and Light,
    Lori Karger

    Lori Karger

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