Thankful for nurses (6 years gone)
Today an anonymous person sent us cookies with Max's picture on them. To whomever sent the cookies: Thank you. Looking at his face I feel like a Wild Thing telling Max, "I'll eat you up, I love you so."
The distractions are gone. I don't have to go to work tomorrow. Grace doesn't have school, and Margaret's pushed her grad school studies away. It's time jump into some intense grief. No point in trying to avoid it. He died on a Wednesday, the Wednesday before Thanksgiving. This year the actual date is on the holiday, but like most years, it's a matter of just getting to Friday.
Thanksgiving isn't fun. I'm not going to pretend it is. We'll be thankful again on Friday. But we aren't thankful for this anniversary.
Tonight (Tuesday night) is the anniversary of the last night we spent with our boy. We began to know then the finality that we still feel now. We chose that day to say goodbye forever, and the final night was our chance to hold him for the last times until the proceedings of the final day could be performed in the manner we best saw fit. This night we spent with the nurse who spent the most nights with Max, and it was right she was there. She had taken care of Max so carefully for so many nights, all the while keeping us up to date until we couldn't hold our eyes open any longer, usually around 3 in the morning. She had a way of suggesting it was OK for us to sleep, not just because we had to function, but because it would be OK, Max would be OK, that she would be looking after him. Her name is Yuri, and her nightly routine, her shift, was so very important to us. We are grateful that she was there for us that final night.
On Wednesday morning 6 years ago, the shifts changed and Max's primary nurse Anmarie came over. She came in to be with us for this shift. To be with us to help us let him go. We know now that she had to let him go too, that she had probably come to feel very close to him, maybe even to love him. Maybe it would have been just part of her job, just part of her routine, but I don't believe that. Even now I'm in awe of her strength to be with us in that room to be there for his last moments, trying her best to give us our final moments of privacy. Oh how she helped to clean his lifeless body with Margaret, to help us dress him before anyone else came in.
Often we talk about the Ronald McDonald House and the care and love that we received while living there. What we learned about ourselves and about the world was informed by the most naked display of compassion that keeps such a place full of light in a sea of darkness. But tonight I just wanted to recall two nurses who saw us at our lowest point, who saw our son at his lowest point, and after that. They saw us looking like total hell, and they saw a boy dying day by day.
They surely knew his future before we did. That was their job. They see sick kids and they see kids die. They must know it when they see it. How then, does one care for a child whose destiny is foretold? How then, to care for parents whose hope blinds logic? First they dive into their routine, they check the meds, they read the machines, they write their notes. But second, they turn and listen. They listen to the parents' fears and they listen to their raw need for support and they never, ever, ever, ever, ever, ever, judge. While there was still a glimmer of hope in our hearts for our son, however dim it might have seemed to their training and experience, they turned to us and to our son, and matched our love to the very end.
It's right to ask what are you thankful for this time of year. I'm thankful for my family, for a wife and daughter who give me support and love and who have helped me climb out of the deepest holes of despair and grief.
I'm also so very thankful for the nursing care Max received in Minnesota. Thank you for making the care of others your life's work. You are what I'm thankful for today, tomorrow, and of course, on Thanksgiving.
Is it OK if I have another cookie? Will it heal the pain if I have a cookie for every year he's been gone?
Friday Margaret will try to Black-Friday-shop the grief away, then we'll put our Christmas tree up, with Max's picture in the front. Saturday we'll push Thanksgiving away finally by going to the windows at Macy's, walk around the German Kindermarket and city tree in Daley Plaza, and see A Christmas Carol. In Scrooge, we'll see a metaphor for our feelings this week. We'll see Scrooge start as the most miserable, ornery, nasty beast of a man (waking up Wednesday). As they play goes on, we'll see him transform into the happiest, most insanely buoyant picture of joy (walking out of the play on Saturday).
Will we really be as happy as Scrooge? Will we really be able to make that transformation?
We'll try. Like every Thanksgiving, we'll try.
--Mike, Margaret & Grace
The distractions are gone. I don't have to go to work tomorrow. Grace doesn't have school, and Margaret's pushed her grad school studies away. It's time jump into some intense grief. No point in trying to avoid it. He died on a Wednesday, the Wednesday before Thanksgiving. This year the actual date is on the holiday, but like most years, it's a matter of just getting to Friday.
Thanksgiving isn't fun. I'm not going to pretend it is. We'll be thankful again on Friday. But we aren't thankful for this anniversary.
Tonight (Tuesday night) is the anniversary of the last night we spent with our boy. We began to know then the finality that we still feel now. We chose that day to say goodbye forever, and the final night was our chance to hold him for the last times until the proceedings of the final day could be performed in the manner we best saw fit. This night we spent with the nurse who spent the most nights with Max, and it was right she was there. She had taken care of Max so carefully for so many nights, all the while keeping us up to date until we couldn't hold our eyes open any longer, usually around 3 in the morning. She had a way of suggesting it was OK for us to sleep, not just because we had to function, but because it would be OK, Max would be OK, that she would be looking after him. Her name is Yuri, and her nightly routine, her shift, was so very important to us. We are grateful that she was there for us that final night.
On Wednesday morning 6 years ago, the shifts changed and Max's primary nurse Anmarie came over. She came in to be with us for this shift. To be with us to help us let him go. We know now that she had to let him go too, that she had probably come to feel very close to him, maybe even to love him. Maybe it would have been just part of her job, just part of her routine, but I don't believe that. Even now I'm in awe of her strength to be with us in that room to be there for his last moments, trying her best to give us our final moments of privacy. Oh how she helped to clean his lifeless body with Margaret, to help us dress him before anyone else came in.
Often we talk about the Ronald McDonald House and the care and love that we received while living there. What we learned about ourselves and about the world was informed by the most naked display of compassion that keeps such a place full of light in a sea of darkness. But tonight I just wanted to recall two nurses who saw us at our lowest point, who saw our son at his lowest point, and after that. They saw us looking like total hell, and they saw a boy dying day by day.
They surely knew his future before we did. That was their job. They see sick kids and they see kids die. They must know it when they see it. How then, does one care for a child whose destiny is foretold? How then, to care for parents whose hope blinds logic? First they dive into their routine, they check the meds, they read the machines, they write their notes. But second, they turn and listen. They listen to the parents' fears and they listen to their raw need for support and they never, ever, ever, ever, ever, ever, judge. While there was still a glimmer of hope in our hearts for our son, however dim it might have seemed to their training and experience, they turned to us and to our son, and matched our love to the very end.
It's right to ask what are you thankful for this time of year. I'm thankful for my family, for a wife and daughter who give me support and love and who have helped me climb out of the deepest holes of despair and grief.
I'm also so very thankful for the nursing care Max received in Minnesota. Thank you for making the care of others your life's work. You are what I'm thankful for today, tomorrow, and of course, on Thanksgiving.
Is it OK if I have another cookie? Will it heal the pain if I have a cookie for every year he's been gone?
Friday Margaret will try to Black-Friday-shop the grief away, then we'll put our Christmas tree up, with Max's picture in the front. Saturday we'll push Thanksgiving away finally by going to the windows at Macy's, walk around the German Kindermarket and city tree in Daley Plaza, and see A Christmas Carol. In Scrooge, we'll see a metaphor for our feelings this week. We'll see Scrooge start as the most miserable, ornery, nasty beast of a man (waking up Wednesday). As they play goes on, we'll see him transform into the happiest, most insanely buoyant picture of joy (walking out of the play on Saturday).
Will we really be as happy as Scrooge? Will we really be able to make that transformation?
We'll try. Like every Thanksgiving, we'll try.
--Mike, Margaret & Grace
posted by Mike Ciacciarelli
2 comments
