Day 272, Revisiting Day 271

Yesterday was a terrible day. I’m not sure I have much more energy today to write about it, but I want to capture it while it is all still crystal clear in my memory.

The night before (Sunday into Monday), Caron and I took shifts with Amber, swapping every few hours when it was time to give Amber her medications. In total, we each probably got about 2.5 hours of intermittent “sleep”, which is only slightly less than the past several nights. Amber did not sleep well either, but as the night wore on, she started coming out of her deep sleep and talking to us. This burst of energy and awareness lasted until around 1:00 in the afternoon, and it was beautiful. We even got to hear “I love you” several more times from her. This was an incredible blessing.

Through the night her breathing had become rough and irregular, but through the afternoon it really declined rapidly. She sounded kind of hoarse and would take 5 or 6 short breaths, and then a long 4-5 second pause. As the afternoon continued further, the number of breaths shrank, the length of the pause grew, and the “death rattle” started setting in. By 4:50, it became a regular rhythm of a short breath and long pause, and in her final minutes, the breaths slowly faded, and then stopped.

The nurses from Hospice prepared us as much as possible for this. We knew this was coming. Amber was comfortable and peaceful the whole time, and showed no signs of distress. But still – this was absolutely terrible. It was also absolutely the right thing to do, and something that we were only capable of doing because we love her so much. Caron held Amber in her arms the entire day, right to the very end, with me right next to her.

And then we cried. Deeper sorrow than I have felt at any time through this journey. The deepest sadness I have ever felt in my life. Amber was gone. Her soul departed, and we were left with just her limp body. The tears were a torrential downpour, our chests aching like someone just punched us.

I carried her back to her bedroom, laid her in her bed, and we prayed that she enter Heaven swiftly. My brain knows that she is no longer in any pain, that she no longer has any physical challenges. But my heart and my soul are shattered.

After an eternity, I call Hospice to let them know she passed. The nurse will come shortly to begin the process. Then, I call her grandparents and aunts and uncles to let them know.

Once the nurse arrives, she helps Caron and me begin preparing Amber. After bathing and dressing Amber for transport, Caron and Marie paint Amber’s nails one last time. Then the paperwork is filled out, and the funeral home is called.

Once the funeral director has arrived, after a few more pieces of administrivia, it is time to have Amber’s body removed. I am given the option, so I pick up Amber from her bed, and carry her out the front door to the waiting vehicle. It is dark, with only the house lights lighting our front yard and walk. I stop and turn to look back at the house with Amber. This is the last time she will see this house, the last time I will see her in this yard, the last time I will hold her in my arms. My little girl, who so bravely fought an aggressive brain cancer, and who made such significant recovery from initially losing the use of her left side. My little dancer, my love bug. My giggler, my sassy-pants. My Amber. I kiss her forehead and squeeze her for a few more seconds. Then I turn toward the vehicle again, lay her gently on the gurney, and watch her disappear down the driveway.

I can only describe what I am feeling as “broken”.

After a few more hours with Caron and our children, we all head to bed, with Caron and Brianna sleeping in Amber’s bed. Sleep does not come easily. But when it does, I sleep deeply, as deep as my despair has been.

This morning, we got out of bed to face our new life, our new reality. Now only 3 children need to be fed breakfast, to be dressed for school (yes, the kids wanted to go to school and see their friends today), to be kissed and sent out the door. And then, Caron and I started the next pieces of process – putting together a wake for Friday evening and a funeral Mass for Saturday morning, and visiting the cemetery where our little girl is to be buried (and someday, us alongside).

It has been an incredibly difficult couple of days.

19 thoughts on “Day 272, Revisiting Day 271

  1. Matt, I just want to hug you. Give you one of those brotherly embraces. Just hold you, let you know that I am here for you. I don’t even know you all that well. As a father, as a brother in Christ, all I can say is that you are an amazing father. That God is looking upon you and your family and simply saying, job well done my good and faithful servant. You and Caron are such an inspiration to us all. Through all of this, you have symbolized, what it is to be a Father. My heart aches for you, for your family. You are in our prayers, if you need anything do not hesitate to ask. No matter the time, the day, the location I just want you to know we are here for you and your beautiful family.
    Love in Christ
    Bryce, Dinah, and kids

  2. Matt, thank you for this raw and gut wrenching honesty. It is one of the toughest, most brutal things to lose a child. I thought of you last night as to how beyond difficult it must have been to have Amber leave the home. I am so very sad for you both and for the kids along with her extended family who loved her so. Much love sent along with my prayers as you live out this most difficult loss. You never walk alone my friend.

  3. Oh Matt and Caron my heart aches so much for you I just don’t know what else to say. This was an brutally honest yet eloquent entry. All my love to you and all of your family

  4. My heart aches for you and your family. I admire your faith and strength. Sending you all continued strength and love…

  5. I wish for you all to feel peace during this devastating time. Through tears, sending you all my love.

  6. So so deaply sorry for all of you💕
    Our Hearts go out to you and your family💕
    Love Art & Donna Young

  7. As a father myself, I can only imagine your heartbreak. But I feel it anyway. It’s not supposed to be this way. May God continue to give you strength in the days ahead.
    “Grief never ends, but it changes. It’s a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith… It is the price of love.”
    – Author unknown

  8. I wish we all could take away your pain. Please know that your daughter has touched the lives of so many people. You are such a loving and beautiful family, and our hearts and prayers continue to go out to you. May you find the true peace that only God can give. 💜🙏

  9. Your whole family is incredibly strong Matt, and your faith is inspiring. We love you all, so much.

  10. I can not put into words the sorrow and heartache I feel for your family. Knowing that Amber is no longer enduring her disease and that is now an angel watching over us does bring some calm to the storm. I hope this prayer brings you and your family some comfort.

    Father, I pray for the Smith Family and others in my circle of family and friends who are grieving…

    They’re hurting for many reasons, and I ask You to help them through this season of loss. I reach out to You, the Father of compassion and the Source of every comfort, asking You to touch them with Your unfailing love and kindness. Be their God who comforts them as they’re going through their struggles, and bring them through the tough things ahead. Come alongside them in their pain, and strengthen them so they’ll one day be able to help others who face the same struggles. (2 Corinthians 1:3–4; Psalm 33:22; 1 Samuel 20:14a)

  11. I am so sorry, Matt. Nobody, ever, for any reason, should have to endure the loss of a child. This is a heartbreaking time. It’s natural that you feel broken and exhausted; how could it be otherwise? I know that the grief you all feel will, someday, slowly, diminish and you will be better able to celebrate Amber’s life. I was thinking yesterday that we often use the term “a life well lived” for the older friends and family that we lose. Amber truly had a life well lived; she was here too briefly but her sass and determination and sweetness touched and inspired countless people. Amber is unforgettable and she leaves a wonderful legacy of inspiration. As you have so selflessly cared for Amber all these months, I hope you and Caron will now care for yourselves and each other. Take time to grieve, reflect and heal. You are all in my thoughts and prayers.

  12. The pain I feel for you Matt, Caron and your families… is like no other… my heart is broken for you all… I wish there words that could heal your pain…. and bring you comfort…. I admire your faith and strength (which I am sure is not easy … not one bit) you are all in our thoughts and prayers … every hour of every day…

  13. As a father and as your friend, it tears me up inside to come to know this. Matt you and your family are in our hearts, our thoughts and our prayers. Sending you love and wishing you strength.

  14. Sending you love and praying for strength for you and your family so that you can lovingly take care of each other during this second phase of your journey. May you find comfort and sources of support. You gave Amber an incredible gift to be home with her family. You and your family are an inspiration to all, as is Amber with the strength, kindness, and sass she showed.

  15. Matt, thank you for sharing these private, precious moments. Your words were heartwrenching to us. You are both a beautiful witness to the love of parents.

  16. Matt and Caron, We heard of Amber through her school friend Jeanie who has been praying with, and for Amber. Yours and her story is hard and beautiful. Amber exemplified the Faith that we’d like to see adults hold as close as she did. A good and Godly family is the best foundation for this in a child’s life> You’ve done well.

    We’re so sorry for your loss, and pray the knowledge of Who she is with, will encourage you now and always.

  17. Your and Caron’s bravery and openness have truly been inspiring. Amber was special because her parents are very special. May God grant you peace and rest in the turbulent days ahead.

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