It's me! Steve still hasn't gotten a chance to sit down and put his thoughts on the "paper." And I am, once again, overflowing with thoughts, so I couldn't wait for him any longer.
It was a sad week for the online support group. Two of our little ones passed away...
It made me think "No mother is an island. The death of any child diminishes me..."
A thought or two has also been bouncing around in my mind, about when the time comes to let Joel "go."
I have heard it said that "when the time comes, you will know it." Maybe some people have this revelation, this knowledge, or feeling that the time has come to loosen their grip...
It seems more to me, that this feeling it is "the time to let go" has to do with one thing only: seeing our loved one suffer. I have never heard anyone say it when their loved one was happy and healthy, when the good times were all fresh.
And I am sure that is how it will be for me. When Joel is healthy and happy and there are good times, I will always be hoping for more. It will never be enough, I will never feel this time is "finished" until it is finished for me, either by Joel's sudden death, or by his prolonged illness.
I recently got the logistics in place, in the case of Joel suddenly passing away, that we do not need to call anyone in, but the funeral home, when we are ready to let Joel's body go. I just didn't want the stress of it all suddenly thrust upon, during the time when I just wanted to hold Joel one last time. I wanted to be able to sit quietly with him until I was ready, and not have my home filled with medics, or medical examiners, or whatever, in our sacred hour. I don't imagine that will be how it happens, usually these PBD kids give some warning that their little bodies are failing, but just in case, I no longer have to worry about it.
With that, the palliative care nurse is sending us a paper with DNR possibilities to consider/check off.
It is a nice thought, to think that I might somehow "know" when to say no to a ventilator, or CPR, or whatever. But I doubt very much that is how it will go.
Because it will never be enough for me. Because I will always hope and long for just another good time. Just another day of smiles or cuddles. How can I know which time is THE time?? Lots of children are on a respirator for just awhile, and then they have more life, more happiness left in them.
I am afraid that my only way to know that Joel will not get better "this time" is when he does not get better... I am afraid, for most of us, it is only by seeing our precious loved one suffer that we are finally able to say "I'll let them go, only end their suffering...." I wish very much that it was not like that. But I am afraid that God will not send me a letter telling me the date that Joel will no longer be able to get better anymore. So I pray, that even though I very much want my chance to say a final "goodbye", God might take Joel without him needing to suffer...
No comments:
Post a Comment