Day 270, Not much longer

Decadron. Keppra. Zantac. Ativan. Morphine. Compazine.

Every three hours.  Every 6 hours.  Every 12 hours. Nothing in sync means something every hour.

This morning, I realize we have done this so many times that we have this down to a routine, able to perform the motions without really thinking about it, even when exhausted.  Clip the tube, open the cap, insert the syringe, unclip the tube, empty the syringe, clip the tube, remove the syringe, repeat for other syringes, flush with water, close the cap.

And then we just watch Amber, while we wait for the next cycle.

Friday night, Caron slept in bed with Amber.  Amber was still talking and walking, but was increasingly tired and had vomited a couple times before bed and several more through the night.  About 5:00 AM Saturday morning, Caron calls me into Amber’s bedroom.  Amber looks like she is trying to talk, but no words will come out, just unintelligible mumbles.  We place a call to the Hospice nurse, and she is at our house quickly.  We know where this is going; we aren’t looking for the nurse to fix anything, we are just looking to make sure Amber isn’t in any pain. Heck, my signature is on the Advanced Directive paperwork, the DNR.  No parent should have to experience the pain of that signature, trying to see the lines of the pen obscured by the tears.

After administering a round of meds, Amber settles a bit and can actually form a few words – but the sentences are coming out jumbled.  She is confused, the words out of order. But her eyes aren’t confused – they look at us, no fear, just taking it all in.

By about 8:00 AM, Amber falls into a deep sleep.  At first, she is just sleeping in the living room, and receives the surprise of her Aunt Mel, Uncle Keith, and two cousins arriving from Texas!  This was one of the things Amber most wanted in her last days, and while she didn’t wake for this, we know she was aware of them.  The grandparents and Uncle Mark and Aunt Meg also come over, and we spend the day all together, with Amber.

We accept pretty quickly that she will not make it to her First Communion that evening, so we call Father Tito, who immediately comes to the house.  We pray over Amber, and while she isn’t able to receive the Eucharist by mouth, she is able to hold the pyx.

I also begin slowly realizing that there are other things I need to think about, coordination and logistics for the immediate future.  My brain starts reverting to project management mode as I think through what comes next, and I have to ask Father about a Funeral Mass and Burial.  And then I place a call to the Funeral Home.  When this happens, what is the first thing I do, what is the second thing?  On one hand, my brain clings to these things because they are structured, tactical, something I can do.  On the other hand, again, no parent should have to make those calls, think about these things.

As of Sunday morning, Amber continues to be in a deep sleep.  We’ve called Hospice a few times with questions about the medications, and they have been an incredible help. It’s less about the specifics of the medications, and more just the reassurance that we are doing the right things to keep her comfortable.  Caron, Marie, and I “slept” in her room with her overnight, watching over her.  Mostly motionless, with the occasional stretch or bend of the arm.  We watch her chest move up and down as she breathes – four or five breaths, then she skips one, every time we think this might be it.

No, not yet, not this time.  But not much longer.

I know how terrible this all sounds.  It is terrible.  We are watching our little Amber, our 7 year old daughter, die.  THIS IS NOT HOW IT IS SUPPOSED TO BE.  But still, somehow, we feel blessed to be doing this.  She is home with the people who love her most.  We’ve had nine additional months with her that we didn’t think we’d have after that first terrible day. We have these final days with her.  We are ok, in a weird kind of way.

Amber, we will be ok.  We love you, we will miss you, but we will be ok. Don’t worry about us. It is time for marshmallows, and time for you to see everyone who is waiting for you in the next life.

61 thoughts on “Day 270, Not much longer

  1. Matt and Caron, Marie, Brianna and Ryan, we are all with you and love you. Amber is so loved. I’m very grateful Keith and Melanie made it with the kids.

  2. Matt and Caron, there are absolutely no words…..I can not imagine.
    I know that you have a support system and family, however, if there is anything at all that I can do, please let me know. My daughter, Melainey, was in class with Marie at St. Joseph’s and we all adore your family.
    May God carry each of you through this time.
    Much love, Dana Tackling 860-608-2721

  3. Put one foot in front of the other and soon you’ll be walking through heaven’s door our sweet girl. We love you.

  4. Trying to read this posting and it was difficult because the words were blurring. They were obscured by tears. To Amber, peace be with you Supergirl. To Matt, Caron, Marie, Brianna, and Ryan know that Love is all around.

  5. All of the love in our house is flowing your way (on a wave of tears, but love, also) I am so sorry. And I am in awe of you and your family. I wish you peace even when its impossible to find.

  6. My heart is just breaking for you and the family. If you need help navigating Amber’s arrangements just give me a call, I’m well versed in all that. Please tell Amber we love her very much and she’s our super hero.

  7. I am so glad your family from Texas made it. You are all so loved. Peace be with Amber as she is carried to Heaven. I hope you enjoy all the cheese dogs and marshmallows.

  8. Words are escaping Dave and I right now. The strength of your family is amazing. Our family is sending love and peace your way.
    ❤️ The Sirrines

  9. It was a year ago my daughter & I were doing this very same thing with my uncle. It should not happen to such a young child. I am so sorry for your pain. Sending you love and hugs.

  10. Amber will be walking with God soon. The pain gone, just pure love and happiness. I believe we all will end up spending eternity together in happiness and beauty. That does not take any of the pain you all suffer at this moment. May God reach down now and help you carry this heaviest of crosses.

  11. We feel so grateful that Marcus was able to have Amber as a classmate and friend. Your family’s kindness, strength and faith through such difficult times has had such a heartfelt influence on our family.
    With love,
    The Cahills

  12. God bless Amber! Soon you will be With all the other angels in heaven, (you always were are an angel on earth), no pain, just complete love and happiness with God. God bless this family.

  13. Matt and Caron, our entire family is with you and thinks of you every day and night. We love you, Amber. We love you all.
    ❤️ The Marshalls

  14. There are no words… I’ve followed every post and never knew what to say. I still don’t, but just wanted to send whatever I can in hopes that it can be comforting in some small way. ::hug::

  15. Your faith and love as a family will carry you through this most difficult time. I hope for a peaceful entry into everlasting life for Amber and strength for the rest of your family to cope with your loss. There are loved ones waiting with open arms for sweet Amber and she will be your angel watching over you all.

  16. Amber,

    I’m so sorry I missed the chance to meet you in this life, I know you’ll be even more amazing in the next and I’ll do my best to catch up when it’s time for me to leave here. Till then keep shining your beautiful light, I’ll be watching for you.

    Chuck

  17. Matt, Caron and family,

    I’m just at a loss for words and will never be able to tell you how heart broken we are. I wish I could carry some for this burden for you. Your strength and faith are amazing and I know that they will carry you all forward. As I type I’m reminded of the story of the foot prints in the sand, where a person looks back at the path walked along the beach of life with Jesus and sees two sets of footprints at sometimes and only one at others, when asked why at times there were only one set Jesus replies “My precious child, those were the times when I was carrying you.” We are the hands and feet of Jesus and I know that your family will carry each other forward, if ever Lucia and I can help we will be here and at the times when there is just not enough strength for any of us I know there will always be at least one set of foot steps moving us on to our final home where we will all be together again.

    We love you and are praying for God’s best in the days, weeks, months and years to come.

    Chuck

  18. Good morning Amber and your loving family .
    You don’t know us but we just recently heard of you and all the love that surrounds you .We are headed to 11:00 Mass and will be in silence praying for your peace and all who love you .I heard that purple is your favorite color,so in honor of you I am wearing my purple dress shirt to Mass.
    GOD BLESS YOU AMBER ,Henry Suzanne and Shane

  19. We’ll be going to a carol service tonight, to sing, with friends and family, praise to the Great King and the Son who came as a baby. We will remember the Holy Family, who will love and care for all of us when our time comes. We will pray for Amber and you and ask for the Holy Spirit to be with us all.

  20. Matt and Carron: The Love, Faith and Courage of everything you are going through! Astounds me. Sheila and I offer you up in prayer for strength and Peace. The Love and embrace from our Lord that has blessed you with the gift of Amber.
    Prayerful for your whole family with much love!

  21. Oh my sweet friends, all my heart is with you as you say goodbye to your little girl. I hold you in my prayers and am sending Amber all my love as she transitions to her life in heaven.

  22. Amber is so loved & truly an inspiration to all. You all have been and will continue to be in my thoughts & prayers. That beautiful Christmas song she sang for us Thursday morning will forever be in my heart.

  23. I have struggled thinking of the right words to say like many who hold you all so dear have. Iam not sure there are any. You are all an inspiration Matt and Caron the girls Ryan your are all amazing. Amber is what we all should strive to be selfless, kind to all, just a beautiful girl inside and out. We continue to for your family and for Amber to make her way to heaven peacefully.

  24. Yours is a loving family and we recognize how special you all are; how kind, and caring. We hope you know there is an immensity of love for you. Condolences from the Postovoit family and mine.

  25. Hi Matt & Caron,
    God, I can not help but tear up when I read your posts and I could never imagine the heartache that you and all of your family are and will go through.
    HOSPICE is such a great group of people who will assist you in so many ways as you may know. I remember when my dad had cancer and HOSPICE was not yet at the hospital so we did not know about it or what they offered for guidance and help. I recall the pain that my dad went through and then think of just a few short years ago when my mom had cancer. HOSPICE did assist us and how peacefully my mom passed away, to go and dance again with my dad.
    If there is anything that we can do for any errands, etc please call me. I am home from the hospital again so I am available. PLEASE know that we are all thinking of your family, Amber may soon pass from this life BUT she will NEVER be forgotten and she knows how very much her family has loved her since she was born.

  26. There are no words. I wish there was something I could do to help you, Caron and the girls. My prayers are with you all.

  27. I have struggled for days on what to say to all of you. I know Matt from work, and he is always so filled with life, love, joy and compassion. Not to mention wicked smart and creative. I imagine your whole family the same way. I imagine a house filled with so much love and laughter. And so much faith. Faith that amazes me more every day as I read this journey you are all taking together. Everyone has said it before, and it’s true. There are no words. Tears gush as we all try to imagine what you are going through and attempt to write something to let you know we care, that we love you all, that we wish we could change your situation. As I read your notes, I immediately picture my children at Amber’s age, and I remember the joy of every discovery. And the beginning of testing boundaries, but also still the absolute adoration they had of their parents and siblings. I remember their sweet smiles and their giggles, and their tears when they were hurt. Knowing Matt, it must kill him to not be able to “fix” this. I know I would. I try to understand why God could possibly need such a young child in heaven. Is he lacking an angel with innocence and laughter and light? He must be, because he is going to receive a child so filled with love and light that she will make the heavens shine so bright. Thank you, Amber, for having so much courage to shine your light for all of us.

  28. Omg, you bring tears to my eyes. You guys are so brave! I can hardly stand it. My mom I know is not here for Long and I have a really hard time with that. She’s 80 and I don’t want her to leave us.

    Feeling so sad and bothered by everything. You guys are so strong!
    Hugs and kisses to all of you! Jason had told me that the Aunt and uncle from Texas came that’s was awsome. Just know your in my thoughts ❤️

  29. Matt, You and your family have been and continue to be in my thoughts and prayers; it is so hard for me to think of you married, with wonderful children – I always think of you as that smart young man that I had the pleasure to live next door to for a few years. What a wonderful neighbors we had. What a wonderful man and father you have grown up to be! Thank you for sharing “Amber’s Way” with us…………..it is a journey no parent should have to go through…….but Caron and you have shown us what we could do for a loved one; that can’t be easy – God bless you and Caron…..Thank you for your family’s physical and religious strength through out this lastest journey in your life! Just know she is going on to a better place, her acceptance of what lies ahead is proof positive what fantastic parents your girls have; especially Amber! Still include Amber and her family in my thoughts and prayers. Hope your family gets all the earthly angels your family needs to continue on this earthy journey. Again, thank you for continuing to teach us how to handle such a personal and enormous issue of family life with such raw honest and soulful words. Love to Mom and Dad; You and Caron and the girls…

  30. Today a cold rain blanketed New England with the reminder that we are not alone weeping. And for a brief time the Sun appeared, reflecting off of the new moisture covering everything in, and beyond, sight, beckoning and reassuring, showing us that the grayness is simply that… gray and fleeting, superficial, almost forgotten, yet permanent, beyond the rays of something brighter. Love you, Nate

  31. Thinking of ALL you are going through as the day progresses into the evening. You are constantly on my mind today. I wanted to reach out again and let you know how much I care. I am so very sad but I truly admire your candor and bravery through every blog post. It has truly been a priviledge for all of us to hear your thoughts. You’ve invited us all in to the very deepest and vulnerable places of your hearts. So grateful for that. Thank you for your sweet invitation to welcome us all into your pain. We are forever changed by you and by Amber. Don’t ever forget how much you are loved and how much you’ve given to us all. I read about you signing papers no parent should have to sign and give medicines no parent wants to give and my heart just aches for you. But I’m so happy Amber got to see her BFF and her family this week. I’m sure that helped comfort her. Matt, Caron, you are wonderful people. You’ve raised caring sweet lovable kids! I am praying and will continue. Lots of love.

  32. I am a teacher at Sayles School. I know Amber because she would come to our school and switch busses at the end of the school day. On cold or rainy days the girls would come in and sit to wait for their busses. It was quite noisy at that time, being the preschoolers and kindergarteners were waiting for their busses to arrive. The girls would just sit there quietly and take in the commotion around them. I would often talk to them as they waited…sweatpants day always got my attention and they would smile and say it was gym day. Just having this little connection has been a BIG connection for me. I found out about Amber back in March, and she has been in my thoughts ever since. I feel as though I saw her just weeks ago walking to her bus, which was a treat. This past week I heard the latest news and was so saddened. I am glad to have met Amber…a face I will always remember…the little girl with the sweetest little smile. I will never look at marshmallows the same way ever again, they will forever be a sweet reminder of Amber.

  33. Sending all of my love to you guys and to Amber! She is such a beautiful, smart, sassy little girl! I am so blessed to have met you all! ❤️

  34. Praying for you all. Amber is so loved and cherished by her family.
    Sending love from all of us

  35. Dear Matt and Carron and family,
    You do not know me, but I live with Sister Mary Patrick who keeps us up to date with everything that is happening with Amber. I also signed into the blog back in March. I just want to tell you that Amber has been in my thoughts and prayers constantly. I thank God that he has given you such a wonderful gift of Faith.My heart literally broke a few days ago when I read the blog that Amber is getting ready to go to Heaven. I felt so happy for her knowing how loved she will be by her heavenly Father, but at the same time I also felt so sad for your family because of the loss you will feel once she departs this Earth. Please know that God is fully embracing each and everyone of you through this difficult time. How much He must love Amber to bring her back to himself at such a young age. Thank- you for the Faith and courage that you have shown throughout this whole ordeal. God will bless you tremendously for your sacrifice. Please know that my prayers go with you each and every day.

    God Bless You,
    Sister Agnes

  36. Dear Matt, Caron, and Family,
    What a blessing it has been to see Amber these past two days. She looks so peaceful, so serene, and absolutely beautiful!! At the same time, I realize how bittersweet this is for you. Your faith about all of this is amazing and is what ;keeps you going. The Holy Hour this evening for Amber and all of you is a tribute to all the love and support that you have. We pray for strength for all of you as you journey along with Amber. May God give you His peace and consolation.

  37. Matt, Caron, Marie, Brianna, sweet Amber Grace, and Ryan….. know you are loved….prayed for in great depth…. and thought of every second of every hour of everyday… sending prayers of peace, strength and healing light! Love and prayers!

  38. Dear sweet Amber,

    May you dance for Jesus.

    My heart breaks for you and your family, but soon you will be with our Savior. He will welcome you into His loving arms.

    I can only imagine what it will be like when you walk by His side. (I Can Only Imagine)

    God must have a special place in heaven for you.

    May God bless you and your family with peace and comfort in the hours and days ahead.

    Life here on earth is but a blink of an eye but eternity is forever. 💜 t

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