Let me first start with some words of thanks. We truly appreciate all of the prayers, kind words, and support for Amber, for us, and for our family. This is an incredibly difficult time for us, but your support helps us avoid completely slipping into despair, and being able to enjoy our time with Amber. We read every comment on this blog and social media, every email, every letter, every IM, every text, and we listen to every voicemail. We haven’t had enough time or energy to respond to the vast majority as we would like, but we do appreciate every one.
It’s strangely calm right now. No more chaos, frenzy. No more trying to keep medical appointments or medications straight. No more hustle and bustle from Metro North, through Grand Central, to the 6 uptown, to the 68th St station. Just Caron and me, with Amber and the other children. As weird as it is to say, this is somehow beautiful.
And it’s a strange peace, too. For the first time since March 22, we know what is coming. There is no more question, no more rollercoaster of highs and lows. And as terrible, as hard as this is, we are making sure we are focused on celebrating the time we have with Amber, these days and weeks that maybe we weren’t initially supposed to have, and not mourning our loss before it happens. Yes, of course, we have our moments of absolute despair – but when we look back on this, that is not what we want to remember.
Today, Amber received her First Reconciliation. Normally, this would happen in January, to prepare for her First Communion which is in May – but we are fortunate enough to be able to celebrate both Sacraments with her now. Amber will receive her First Communion on Saturday.
Father Tito has been part of our life for a very long time — I was in 2nd or 3rd grade (33 years ago!) when he began at St. Patrick’s in Norwich. Caron received her Sacrament of Confirmation from him, he married Caron and me, he performed the Baptism of all four of our children, and has given our older children (Marie and Brianna) the Sacraments of Reconciliation and Communion, which Amber is now receiving. And, he gave Amber the Anointing of the Sick many months ago when this started, and again this week with this new downturn. He has been a big part of so much of our life, and it is both fitting and comforting that he is part of this with us too.
Today, we had THE talk with Amber, while the other children were at school. We’ve been struggling with trying to figure out how much she understands, how to talk with her about it, what to say. So we just asked her – “do you understand what’s going on?”, “do you know why we aren’t going to MSK or CCMC anymore?”, “do you know why we are having you do your Sacraments early?”, “what do you think happens if that tumor keeps growing?”. After many really good answers, she says it.
“Am I going to die?”
She doesn’t ask it like it’s a revelation of any sort. More like it’s the obvious conclusion, and if she knew we were trying to get to that obvious point, she would have just said it earlier.
I can’t quite describe how it felt, trying to talk about this. It was terrible, terrifying. It tore at my Soul with every word. For her to respond in such an anti-climatic way was almost a relief. She is not afraid, it is just the way it is.
We continued to talk about Heaven, which Amber described as Paradise. She can’t wait to see Uncle Ned (who passed in 2016) and Mo (our kitty who passed in 2012). And apparently, you can get all the marshmallows that you want, and everyone is happy and healthy there. We talked about how much we are going to miss her, but how time works different up there and she will barely blink before we are there with her. It was such an incredibly sad conversation, and yet comforting to know that she isn’t afraid.
We didn’t talk about exactly how much time she has (because, well, we aren’t exactly sure, and she has the literalness of a 7 year old) – but she understands that it isn’t too long. So, we started talking about what she wants. At the top of her list is having tacos (just cheese, no meat) and Domino’s Cheesy Bread for dinners; and visiting with her best friend Catherine. She also wants to watch a movie and snuggle with Mom on the couch; to go back to the Boston Children’s Museum with Dad (like we did last year); and to finally see her Uncle Keith and Auntie Mel who live in Texas with their children Noah and Autumn (the last time they visited she was still heavily sedated). She told us that she wants people to remember her as a nice person, and to remember her story going through all of this.
Again, this conversation was very matter-of-fact. Aside from the context, this was like any other conversation we would have had. It is just so strange, so surreal, to be talking like this. It is both the most disturbing conversation I’ve ever had, and the most comforting. Superficially, I am just talking with my daughter. Internally, my Soul was drowning in despair and burning with fear.
But then, the day continues, almost like any other. Her friend Catherine did come over to visit, and it made Amber happy (I love her laugh so much). Amber is comfortable, happy; if I hadn’t seen the MRI myself, I wouldn’t be able to accept the truth. She isn’t even complaining about her minor headaches right now. Aside from the physical constraints she has been dealing with from the beginning, and taking a few naps every day, she is just normal Amber. And we know we are blessed for this to be the case.
We have started reading this blog to Amber, with the whole family, from the beginning. We’ll try to read ~10 posts every night. I don’t know if we’ll make it through all 120 (now 121) posts, but we want to hear Amber’s reaction to all of this, to capture anything from her perspective that we may have missed. But just as much, we want her to know how many people have commented on these posts, and what they’ve said. Many of you have been following this blog for a long time, and have left comments. If there is anything you would like us to convey directly to Amber, please feel free to leave it in the comments of this post. We will read these comments to her right away, and won’t wait until we get to this 121st post.