And so it begins…

We’ve begun the next stage of this amazingly difficult journey. Things have progressed and hospice is now on board. It’s not altogether surprising…and yet it’s still tears at my soul. We don’t need round the clock care but we do need pain management support.

We progressed to the next level last Saturday night. We have all noticed the gradual decline in his strength and energy. But Saturday night things spiraled downward at a rapid pace and it was bad. Really bad. He was acting a bit wacky and was in so much pain. The vicodin wasn’t touching it and there was nothing I could do except make him as comfortable as possible and try not to go mad watching David get sick and be in pain.

I don’t want David to ever have to be in that much pain again. Ever. So that’s where hospice comes in. We’ve met his nurse, who was recommended to us by a dear friend in the field, and she is lovely. She’s kind, gentle and proactive. Exactly what we need. She’s helping David to manage his pain and gently preparing us for the next stages as things progress. This whole thing sucks unbelievably…but at least we know that David’s needs will be met at any time of the day. I have someone to call if things go down that dark path again. I won’t be alone at 3 am, helplessly watching David in pain ever again.

So here we are. Just trying to get through the days. Sometimes just trying to get through the hours. David is still “David” and that is a gift…especially at this stage of the game. But it is still hell. No matter which way you slice it…and it will continue to be hell.

Alec is doing amazingly well considering that his entire world is topsy turvy. He’s taken up more of a “caregiver” role. He gets daddy his cane, covers him when he’s cold and pulls up his little chair to sit beside him…”petting” him as he likes to say, to make daddy feel better. Basically he’s mimicking everything I do. The other day he pulled up a chair and declared he was going to read to daddy. It was so precious and yet heartbreaking. To see our little boy by his daddy’s bed, reading him stories and curling up beside him. I’ve read many books on children and bereavement and they say that Alec being a part of events happening is the best thing we can do for him. Otherwise, if we hide it or exclude him from it…it will create serious issues down the line.

So, although the things he’s doing for David are simple…they mean everything to both Alec and David. And I’ve been told that these memories of Alec reading to his daddy and snuggling up beside him while he rests…will carry Alec through the years. Will help him somehow move beyond all of the pain and loss. Because even at 3 ½ they want to help and be a part of it. And being able to do this has given Alec comfort and a feeling of usefulness in a helpless situation.

So, I watch my husband and our son snuggle on the couch...watching shows or just resting together in peace. It’s one of the most beautiful and tender things I’ve ever seen…and it breaks my heart.