Day 267, Peace, Calm, Comfort

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.

73 thoughts on “Day 267, Peace, Calm, Comfort

  1. Amber, Emma and Hailey say “I hope you feel better. We love you.” Uncle Matt and I want you to know we love you and your family so much. We are so inspired by your grace and smiles.
    Matt and Caron, you both are the most amazing people. Your strength and goodness has made me want to be a better person. Love you all.

  2. The shooting star story struck a nerve. The day after Heather passed away I was driving Ella to gymnastics and right in front of us, the most beautiful, bright shooting star crossed the horizon in a perfect arc. It was unmistakable and I had never seen anything like it…nor have I seen it since. I have no doubt that her spirit was sending me a message. Amber, you are a shooting star here with us. Thank you for being a bright light for all of us to follow….Love, Aunt Jean.

  3. Amber, I want you to know that you are truly the bravest little girl I ever met. Your courage, determination, and faith that you can do anything you set your mind to is inspiring. Matt and Caron – sending your family love and prayers.

  4. Amber the strength you show is contagious and makes us all want to be better people. You have the most amazing parents, grandparents, and siblings. You’re first communion will be spectacular! You will light up the room and make sure you laugh as much as possible – your dad loves it!

  5. Hi guys!
    It really saddens Art and I to here this news. I really don’t know where you get your strength. I believe in god but I would be so angry with him, but yet no you guys have amazing faith! I commend you and your family especially that amazing little girl! It goes to show how strong and how amazing your faith is… we wish you all an amazing time with Amber! You guys have taught me a lot reading these blogs.
    PS Amber we are so proud to know a beautiful amazing little girl!
    Merry Christmas to you all and god bless all of you! Stay STRONG!
    Love, Art & Donna Young
    🙏🏻

  6. Dear Amber, You are in the hearts and prayers of so many. You inspire me to be more faithful, more brave and more appreciative. Sending you love and wishing you a great time at The Science Museum. God bless you Amber.

  7. Amber, full of Grace, you are so aptly named. We are so in awe of you and love you with our whole hearts. Jacob talks about you all the time, though you should know he calls you Ammer Grace (something we find adorable and are hesitant to correct as it is his special way of talking about his cousin that he loves so much). You are the most Super Girl we have ever known. Shine bright, little light! We will love you forever!

  8. Amber, we wish you congratulations on your First Communion. You are an amazing little girl. To your family we send our constant thoughts and prayers. God bless and guide you all.

  9. Dearest Amber,
    I wanted to take a moment to tell you about a friend of my sister’s who lives in heaven. Her name is Brynn. She is 5 years old, and loves to go on scavenger hunts, read books, and sing silly songs. She loves butterflies and the color purple. She has lived in heaven for a little over a year now, and I have a feeling if you ever meet her you will be instant friends! You can see her FB page from when she lived here at HelpBrynnwin. I know it’s hard and scary for your mom, dad, sisters & especially you to even think about living somewhere else, and making more new friends, that is why I am sharing Brynn’s info with you. I think you two will be instant friends who can sing silly songs together and giggle & play all day long! Wishing you lots of cheese tacos & cheesy bread days ahead! ♡

  10. Dear Amber, I will miss you truly, but it is part of Gods plan, I will always have great memories of you, especially playing in the parking lot after church. You will always have a place in my heart. I love you so much. Catie

  11. dear amber, you always make me laugh, I love when we would play together after church. I will miss you truly!

    Love Nick

  12. Dear Amber, we have been blessed to have known you since you were born and fortunate to watch you grow into an amazing young girl with a beautiful smile and even more beautiful heart. We love you!

  13. Amber, when my daughter just 3 or 4 years old she would share with me that she saw my mom, who had passed, in Heaven. When I asked her what it was that she saw, she replied “it is so beautiful there and peaceful, lots of green grass and flowers with all of those that have gone before us”.
    God bless you little angel.
    Dana

  14. I couldn’t help but cry when I read this post. You captured this experience so well and I really can’t imagine what you’re all living through. I’m so happy to hear that you’re home and starting to find peace in all of this. Enjoy all the time you have with Amber and the the small moments that bring joy. Sending my love and well wishes to your family. -Kristin

  15. Amber, you inspire us all with your faith and love. Like all of the Saints, it was their love for those around them and God in heaven that defined their lives. You are an extraordinary example of both faith and love. You are in our hearts, thoughts, and prayers.

  16. I have thought of you all so often since first meeting your wonderful family. Amber, your smile is infectious and truly unforgettable. My life has been forever changed by your story. I often wonder how such a young, sweet girl could be so incredibly strong. But yet, you are. You all are.

  17. Amber, I have followed all of these posts since the beginning. I met you only once in Walmart with your beautiful amazing Mom. I immediately loved your spunk and spirit. It stuck with me. You are simply awesome.
    I admire you and am in awe of your miracle. I work with youth and kids in our church and speak of you often. We will keep praying for you and Mom and Dad and your family. My family will keep praying too. We are all so proud of you. Love you cutie pie.. May God keep shining through you!!

  18. Dear Amber, I remember every time I came over, we would laugh and play for hours and you would always tell me to play with you more than the others. and when I did, we were both really happy. I am glad I played with you. You are strong and in my prayers. We love you! ❤

  19. Amber, sweet precious girl…. you are the strongest lil tiger I know… I want you to know that you are loved and thought of each day…. sending prayers of love, strength, peace and healing light! God bless you sweet angel….

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