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. My thoughts and prayers are with all of you. At 37 I don’t have the faith and courage Amber has. She has inspired me to be better. Be present. To not be afraid of the unknown but to have faith that He has a bigger and better plan than my own. You and Caron have inspired me to truly appreciate every moment with my children bc we are not guaranteed tomorrow. So many hugs and so much love to you all. I hope Amber enjoys her special time with family and friends and all the pizza she can eat!

  2. Amber, you’re strong and beautiful young lady. God bless you and your wonderful family.

  3. I’m trying to think of something to say that Anber won’t roll her eyes at, but I think that’s impossible! Oh well, we love you Amber (even if you are a little monster like Riley!)
    -Tommy and Kristen

  4. Sweet Amber Grace, our beautiful niece and Goddaughter, we’re on our way! We’ll be there soon with Noah and Autumn, who are SO HAPPY to finally be able to see you again! 💜💜💜💜

  5. Matt, Caron and Amber,
    You’re always in my prayers. You’re all so much stronger than anyone I’ve met in my life. When I think of you guys I only think of your smiling faces.
    Love, sandhya

  6. Sending good thoughts and prayers to all of you, especially Amber. She has brought a huge ray of sunshine to all of us. She will continue to shine down brightly on everyone when she reaches paradise! Much love to all the Smiths and especially to Amber! We will always love and cherish you.

  7. Hi Amber,
    Congratulations on your first Communion. I hope you will enjoy the process and will have fun too!! I sure hope that Santa will be very good to you. When I send him my letter I will mention you and your sisters and brother too!!!
    Merry Christmas!
    Love,
    Kellee
    xoxo

  8. Sending good thoughts and prayers to all of you, especially Amber. She has brought a huge ray of sunshine to all of us. She will continue to shine down brightly on everyone when she reaches paradise! Much love to all the Smiths, especially Amber. We will always love and cherish you.

  9. Amber is a very special girl who has been blessed with a very special mom, dad, brother, sisters, grandparents, and on and on. Love you guys!! The Reguin’s

  10. We (my husband and I) certainly think that Amber is so nice and amazingly brave! Amber, I taught your mom when she was only 3 years older than you. The stories of how fun, sweet, lively, and brave you are also remind me of your mom when she was young. You are part of a wonderful, amazing family who love you. You all show everyone how to love, laugh, and believe. I am so impressed with you and how you tackle hard stuff and also how you enjoy the fun stuff too. Sending holiday cheer from North Carolina. Blessings, Kelly and Art Shaw

  11. Amber, you are a very special little girl. I was so touched, and still am, when I hugged you after the healing service on Nov 4th and called you Super Girl that you wished me a happy birthday! Wow, I thought about that for days after. You are so sweet! 💕

  12. What a beautiful family. Through tragedy the love is so strong. Your family is absolutely amazing. I look from afar in awe. It inspires to see how you all hold each other up.

  13. Amber, we’ve only met a couple of times, but I’ve heard so many wonderful & inspiring things about you and your family. There’s something to be said about you and your family’s faith, love, courage and strength. God Bless
    ❤️
    Zorianna Smith’s Auntie Lynnie and family

  14. Amber, you are an amazing person and you have an amazing family. Thank you for sharing your story with us and touching our lives. You have made such a great impact and inspire us. Bless you and your family.

  15. Amber, you are one of the most amazing girls I know. At 7, you have more faith, perserverence and trust than I do. I used to teach you, but you have taught me the best and most important lessons that I will carry with me always. Know that you, your brother, your sisters and Mom and Dad are in my heart, thoughts and prayers.
    Forever hugs ♥️
    Miss Becky

  16. Matt, Caron, & Amber,
    No matter what the future holds, I want you to know that all of you have left an amazing imprint in my heart that I will carry with me my entire life. One beautiful young girl, who I had only met briefly when her little brother was born, is now a part of my heart and soul.
    To see the strength, faith, trust, and holiness that you share as a family is such an amazing example for everyone. No words can describe the sadness we feel seeing you going through this horrible experience but it’s also true that no words can describe how utterly amazing you’ve been as well.
    As the rest of us experience our highs and lows in our life experiences I just want to say thank you for being such an example for hundreds if not thousands of people who have admired your courage every step of the way.
    I love you guys and please know that the prayers will never stop for you.

  17. My love to you Amber. Big hugs and kisses 💗💗💗 you are such a strong, beautiful little lady 😘

  18. What a sweet angel and remarkable love from her family. God Bless you all.
    My priest wrote a book called “After the Diagnosis” by Fr. Tom Lynch.
    Powerful . It may bring you peace during the suffering. 🙏

  19. As parents to a 7 year old little girl, we cannot imagine what you all are going to but find Amber’s strength and grace inspiring and so beautiful. Wishing her a holiday season filled with all the love in the world. Keep shining your light Amber, you have made the world a better place! Our prayers are with you all.

  20. Caron has what I would love to share with Amber, and when Jim finds my painting in process, we will send you photos and if you and Karen after reading my blogs would like me to talk to Amber or if Amber would like to talk to me about heaven, I would be more than happy to do so! I am so blessed that she’s going to get communion! And I want you to know, if you wonder at all, she understands what the sacraments mean and she understands more than you know as a seven-year-old! Because Jesus is near and with her and telling her how much he’s with her and will be with you guys when she goes to be with him!

  21. Thank-you Matt and Caron for creating and maintaining this blog. Your unwavering faith throughout this journey is an inspiration to everyone reading it. You’ve accepted this time together since right after the father-daughter dance as a gift from God. What a great way to model “Thy will be done”. It’s no wonder Amber isn’t afraid, she has you for parents and she sees your trust in His plan.
    Tommy wants Amber to know that he loves her. He is sad but also super proud of her and so happy they have been classmates since pre-K. We will be at Amber’s First Holy Communion on Saturday and all of our children are looking forward to seeing her. Our family will continue to pray for yours and for a gentle, loving and peaceful transition from this life into paradise for Amber.

  22. Miss Amber Grace, It seems like just yesterday that your mom and I were walking up the sidewalk with you and Cole, “The Blonde Twins.” You were Cole’s first Official school friend (he was very proud of having you 🙂 ) and your radiating light of a personality shines brighter than you will ever know. You have touched SO many hearts and are The Bravest girl, a true superhero. Thank you for being such a sunshine in so many of our lives. 💜 We love you so very much beautiful girl. Make sure to have an extra marshmallow for me. XOXO Love, Mrs. Sylvestre, Aubrielle, Mason & Cole

  23. Amber , my family and I have known you since you were in your moms belly. We have watched your journey through Facebook and the blog. We’ve prayed for your cheered your victories and cried for your struggles. You’ve become our little hero girl an example of strength faith and love in the face of adversity. You are an amazing little human – our love is with you always ❤️❤️❤️❤️❤️

  24. The strength and faith that you have all possessed during this life altering experience is just mind blowing. Know that we continue our prayers for all of you during this difficult transition of life. Amber is such an amazing, strong girl and that is due to the love and faith provided by both of you. I would never never say I can understand the pain you must be feeling but my heart is breaking for all of you.
    I will be sure to share with Ella that Amber only likes cheese on her tacos, since that is also how Ella takes hers (although she adds an overly generous portion of sour cream as well). We are so blessed to have you all in our lives. Enjoy and cherish every moment you have with Amber! 💜 🦋

  25. Dear Amber,
    You are an amazing and beautiful young lady. Through our friendship with your Auntie Di and Uncle Jim, we have been fortunate and blessed to know you, your mom and dad, and sisters and brother. We want you to know that you are loved every minute of every day, not only by your family and friends, but also by your pals in Terryville.
    With grateful and loving hearts,
    Chris, Julia and Katherine Cocca

  26. Amber, that is fantastic that you are making your first Holy Communion!! That is the best! May Saturday be filled with love, laughter, peace, fun, and after receiving Jesus for the first time, marshmallows!!
    We are continuing to pray for you and your family sweetie! Happy First Holy Communion Day!

  27. Amber, I haven’t had the pleasure of meeting you, but I grew up with your mom. Reading your story and witnessing how much love and support your family has for each other, and how incredibly graceful and strong you have been through all of this is touching and inspiring. You make me so happy for your family, that they have had the chance to be yours. Blessings and love to you, and may your communion this Saturday be wonderful!

  28. Caron & Matt,
    I have been struggling to find words to say to you guys since I read day 265…… Nothing I can say will make your pain and sorrow go away! I just wanted to take a moment to let you know how much your family has touched my family’s lives. Following you guys through this journey watching you band together and support and love one another has been amazing to watch! You two are what parents are supposed to be! You Love each other and your children with everything you are! You make me strive to enjoy every minute on this Earth with my family and friends! I’ve learned the simple things like hugs, and telling your children that you love them is more important than all else. The time we have together is not guaranteed and appreciate every moment! Your family has made everyone of us that has followed you guys better people! I’m so sorry for what is to come in the near future! You two are inspiration to us all.

  29. Matt and Caron, following Terry’s passing I had a conversation with a friend whose son passed from a GBM. He took comfort knowing his son was now at peace…no more MRIs, blood tests, steroids, worry, etc. He was at peace. My heart is hurting. Our Amber is a true warrior.

  30. Dear Amber, we are so proud of you in every way. I will never forget the kindness and grace you possessed when I visited you in the hospital. I loved our conversation and your force within. You are forever in our hearts and we can’t help but smile when we think of the spunky adorable witty girl that you are! Sending lots of love and rainbows and sunshine and unicorns and glittter your way! Amber’s Way!

  31. I am amazed at the grace and strength that Amber and all of your family have shown during this journey. Please tell Amber that she inspires me. I think she is smart and funny and kind and strong, and so pretty, too! If I had a daughter I would want her to be exactly like Amber in every way.

  32. What a brave girl and an amazing family. You are an angel Amber. God bless you. We pray for the family’s peace, comfort and strength.

  33. Practice your singing, Amber. God has a special place for you in the chior of angels. I’m looking forward to hearing you sing when I get to Paradise. I love you and admire your courage. fern martin

  34. Amber — You don’t know me, we’ve never met. I work with your Dad and I think he’s the greatest. I’m sure you do too. Reading this blog these past few months I feel like I’ve had the privilege to get to know you and your family. They’re pretty great. I’m sure you think so too. My wish for you is to enjoy all those things you love — your friends, your family, especially Mom & Dad & your siblings, and of course Cheesy Bread! Also the peace that comes from your faith. God Bless!

  35. Amber.. We have been following your story from the very beginning. Kaylee (PreK 2016 and 2017) looked up to both you and your best friend Catherine. She always talked about how nice you were. Thank you for making her years at St. Joe’s so special.
    I remember the day you came back to school to visit for the first time. All of your schoolmates were in their class lines as the bell was about to ring. You came into the gym and everyone ran up to you so fast. They missed you so much and couldn’t wait to see you. The bell didn’t matter.. the rules didn’t matter.. all that mattered was that you were in the gym and everyone needed to see you and say hi. It was clear how amazing of a girl you are to touch so many lives! Thank you for being an amazing friend to so many and an inspiration to all!! Xoxo
    Kaylee’s mom, Kaylee, and our entire family!! ❤️

  36. Dear Matt, Caron, Amber,and family,
    You are one amazing family! Your faith and strength are an inspiration to all of us. Congratulations to Amber on making her First Reconciliation yesterday. I think we are all looking forward to seeing you receive your First Holy Communion tomorrow at St. Mary’s Church. Amber, I am so glad that you are receiving these sacraments now to help you on your journey to Heaven. While this time is bittersweet for all of you, knowing that Amber is receiving so much grace, is a comfort. You are all so special. God bless you.

  37. Please know that you all are in my thoughts and prayers everyday. Your faith and strength are truly an inspiration ❤️
    Amber, I totally agree that tacos are best without the meat! 😊🌱

  38. The two of you could be professional writers as you both write SO beautifully. My prayers for all of you have only intensified! God bless you all!

  39. Both of you are the most amazing writers – so poignant & beautifully written! My prayers for all of you have intensified. God bless you!

  40. Dear Amber,
    It was still dark this morning when I went out for an early run. Moving up the hill in front of our house, I saw a shooting star streaming across the sky. It was bright and beautiful and super fast. I thought to myself…that reminds me of Amber….bright and beautiful and blazing a brilliant trail of light across the darkness for all of us to see.
    I feel so honored to have known you and to have watched you grow up into the sparkling little girl that you have become. You have taught us all what it means to be truly kind, selfless, patient and accepting. I want to thank you for being such a good friend to my boys. You made Andrew laugh every day he saw you….you made Joseph step back and say, “She is so small, but she is so very brave,” …..and most importantly, you taught Stephen how to be kinder, more gentle, stronger when he feels pain, and how to give to others just to make someone else happy….and for me, that gift is priceless.
    I want you to know that you are so very loved and cherished and that we will never ever forget you. We will be here for your mom and your dad and for your sisters and brother, everyday and for anything they need. And I will always think of you whenever I see a shooting star, way up in the sky, leaving a bright and beautiful trail for us to follow….Giant hugs Amber…
    The Landolphi Family….

  41. Amber you are definitely a supergirl! You are a strong girl going through this! I love you so much❤️

  42. Life is eternal and love is immortal. Death is only a horizon and a horizon is only the limit of our sight

  43. My heart rejoices in the love you share. Warren and I will be at Mass tomorrow to celebrate Amber’s First Communion. Father Tito will be opening the school gym at 4:00 so that we can take Amber’s First Communion pictures and we hope you will have your family pictures done then, also. It will be our honor to take the photos of such a wonderful family, and of such a beautiful little girl. It is not much, but we hope you will accept these photos/memories as our heartfelt thank you for sharing your love and faith, and your beautiful daughter with us all. What a lucky little girl to be able to hug Jesus before the rest of us. Our prayers are with you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s