Two whole days have passed now, and now we’re in the third. The hospital bed has been removed from our room. The arrangements are being made for Monday’s memorial service. There are lots and lots of things to do. I guess that is a good thing…keeping busy, keeping distracted on details, rather than on the gaping hole in my chest. I am sad, profoundly so. I feel his loss keenly. I will always miss him. But there are so many other emotions and feelings swirling around, too. I feel peace that he no longer has to fight, relief that he is no longer in pain, and even anticipation for what is yet to come for the boys and me as we forge ahead in this new and different world. The weight of the last two years is peeling away and I don’t know what will come next.
The boys are doing well! They, too, are sad, but children are resilient! Amazingly so! Thankfully, they were with friends on Tuesday evening after school and played until bedtime. Surprisingly, they didn’t ask to call or check in, which is their normal routine when away. They had already given Scott hugs and kisses when they saw him on Monday evening, and knew that based on Scott’s condition at that time, that he could pass away at any time. Death is not a pretty thing, and they needed to remember their dad how he was, not how he looked in his final hours.
On Wednesday morning, I was there to meet the boys. Max, not surprised to see me, asked how dad was doing, and I let them know that their father was gone. There were tears and questions, and more tears. Lots of love and hugs. And then slowly, there was a facing of the day ahead. They wanted to go to school, albeit a bit late, and they began to start their day.
You see, they grasped from the beginning what us adults take a long time to figure out (and some never do). Life is about living! Every day! Every moment! The best way to honor someone who has passed is to live your life. As I said to someone yesterday, Scott would kick my butt, if I was doing anything but that. This is what we have tried to do in the face of the challenges of the last two years. This is what the boys and I will continue to do, as we figure out what it means to be a family of three, instead of four.
So, they went to school. They were a bit nervous – how would people act, what would people say. But, knowing the amazingly supportive environment they are in, I knew it would be okay. Cole didn’t want to miss his Gettysburg Address test or the first day of the Civil War Museum, where he presented his display and shared his research on the Massachusetts 54th. And Max didn’t want to miss his class party. I picked them up a bit early and we went home and hung out. Lots of different questions, many without answers. We played. We laughed. We ate dinner, dad’s favorite Mac and cheese (Smac, how we love you!), and for the first time in a while, I could sit and eat dinner and focus on the kids, instead of running back and forth between them and Scott. They both, summed it up similarly, that while this was a sad day, it was an okay day.
I know there will be many more sad days. I know that the loss that we so keenly feel will continue to bubble up and out in different ways in the days, weeks, months and even years ahead, and I appreciate the wisdom and insight of those that have gone on this path before us. I know that this will indelibly mark all of us – but I have faith that the family the four of us created together has set our compass in the right direction.
People do this. People get through this. People lose spouses. Children lose parents. We are now a part of a different club. And whether or not we want to be members, we are, and we will figure this out together.
And I guess I still feel that the greatest sense I have is the feeling that I have been blessed. Blessed to have had the opportunity to meet and get to know such an amazing soul. Blessed to have married him and had two wonderful children. Blessed to share so many years and experiences as we made our way through life. Blessed to have had two years to share the PC part of the road by his side. Blessed to care for him in his final days. And blessed to be with him as his soul moved on.
I thank all of you who have been and continue to be part of our journey, standing by our sides, whether right next to us or from far away.
So now, what comes next? We’re going to celebrate Scott’s life here in Charlotte on Monday, May 28, Memorial Day at 11am. We’ll gather in Freedom Park on the island where the band shell is to share stories and memories, to listen to music, to pray, to laugh, to cry, to remember. I’m not dressing up – I hope you don’t either. Scott was a casual guy and he’d hate to think of anyone sitting out roasting in the sun in a suit or tie on his behalf. Actually, he probably would a kick out of it it and laugh at you.
Since so many of Scott’s family and friends are in Michigan, the boys and I will also be heading there to celebrate Scott’s life in the coming weeks. I will let you know those details as soon as I have them.
In lieu of flowers, or for those who want to do something in Scott’s memory, I offer you three choices for donations, two meaningful and altruistic and one meaningful, but entirely self-serving:
These folks are a great support for families facing PC. Shortly after Scott’s diagnosis, we were in touch with them and they provided a great deal of support throughout our journey.
What can I say – these people are angels here on Earth. Scott’s nurse, Amy, was absolutely amazing. I couldn’t have asked for a better person to walk the final steps of this road with. Although, they desperately need to give the nurses cell phones with keyboards so they can text like the rest of us! Really! How the nurses manage to spell out names of meds and detailed instructions with a numerical keypad, I do not know.
Providence Day School
5600 Sardis Road, Charlotte, NC 28270
Ah, the boys’ school. A large part of our village and a huge source of consistency and routine for the boys. And as we move forward, I expect it will remain so. If you want to send them a check and put Max and Cole’s name on the memo line, feel free to do so. There are still many years of tuition ahead!
Peace and love to all of you. The outpouring of support this week has meant so much to me and will mean a lot to the boys as they get older and discover this blog.
And while prayers, good vibes, well wishes and other support are always appreciated and welcome, we know we’ve now got Scott looking out for us too and that’s a BIG amount of love.