He's not doing well. It's now been 20 days that we've been watching him slip away from us. Each morning I wake up and think "I can't do this, I can't make it through another day of this" and each night I'm surprised that somehow I did. I don't know how I did.
His breathing has been very slow and very shallow and has been for days and days and days. He's skeletal, it breaks my heart to see all of his bones, his body stopped digesting food 2 weeks ago. His face, his eyes and cheeks are sunken and bluish. I cry at what MLD has done to our son. I scream at the unfairness of all of this. Our baby boy, I am so so sorry. I feel like I'm falling into a dark abyss, this is every parents' worst nightmare, and I'm living it. Most days I can't believe this is my life, staring at your own child wondering which will be his last breath. It's torture. Our chubby cheeked sweet boy that loved giving hugs and pointing at cars. We don't know how he's still hanging on. We continue to hold and cuddle and kiss him. He's holding on and we're not sure why.