As happens every year about this time, we all think about New Year’s resolutions. Maybe we want to lose weight, or kick a bad habit, or budget better, or exercise more. For us, it has been a terribly difficult year – but we’ve also learned a lot about ourselves, about our communities, and about life in general. Over the past 10 days since Amber’s wake and funeral, we’ve had some time to reflect a bit, and came to a realization of what we need to do better in 2019.

The support we have received over the course of this journey has been incredible. Thank you to everyone that has thought about or prayed for Amber and for us, sent notes, messages, letters, packages, food, made phone calls, talked with us, or attended the wake or funeral. Truly, we are humbled by the love we’ve felt.

One thing that really struck us, though, was just how often people mentioned this blog. When we first started this blog, it was simply a way for Caron and me to spend less time sending out updates to everyone about how Amber was doing. We really only expected a few close friends and family to follow the blog, but even with that expectation, it was still uncomfortable for Caron and me to write. We are very private people, and the thought of sharing these details in writing was a bit scary.

But sharing the story became therapeutic for us, and the blog also became part of our support process as people reached out through the blog, or knew what we were going through because they read the blog and offered us assistance.

And this is where our recent realization comes in. As uncomfortable as it was, making our story public helped bring us much support. But we realize that many people going through difficult times suffer silently, and so do not receive the volume or quality of support that we received.

And so, this brings us to our resolution for 2019 – we will strive to be more aware when people around us are experiencing tragedies, difficulties, challenges, and try to find ways to support them as we have been supported, even if it is something as minor (but incredibly valuable) as a note or a hug to let them know they are being thought about.

Over the past few weeks, multiple people have shared touching stories with us where Amber teaches us this lesson. Even in the last month of her life, as her energy and patience was decreasing, Amber would check on her friends that were sick, and greet everyone with a sincere “how are you doing?”. If Amber can seek to understand other people’s challenges and provide support, in spite of everything she was facing, then so can we.

And we invite all of you to do the same. In Amber’s memory, in Amber’s Way, please look for those that need help, those that may be suffering in silence. And look to find ways to support them, knowing that sometimes even the smallest gestures of support can have incredible value.

Caron and I will be writing a couple more blog posts, but we are coming to an end for this blog. We will keep the blog online though, in case anyone else finds value in reading about Amber’s story, so please feel free to share with anyone that might find interest. Happy New Year to everyone – may 2019 bring peace to us all.

http://www.legacy.com/obituaries/norwichbulletin/obituary.aspx?pid=191039211

It’s weird to transition from grief to planning, but it’s also a little bit of welcome distraction. We’ve met with the Funeral Home Director, our Priest, and the Cemetery Manager. We have picked out a casket, a cemetery plot, and hymns for the choir to sing. It is all so surreal, and so very very sad.

We will hold a Wake for Amber Friday (Dec 21) evening in Taftville, and the Funeral Mass will be Saturday (Dec 22) morning in Baltic. A private family-only burial will follow. Anyone that would like details on the Wake or Mass, please contact me, Caron, or one of our family (off-blog, by email, phone/text, Facebook, or in-person please). The Wake will be Open Casket (parents – please note this in case children would be uncomfortable seeing Amber).

** Update – details published in Norwich Bulletin Obituary **

In lieu of flowers, please consider a donation to St. Joseph School in Baltic, CT or the Connecticut Children’s Medical Center in Hartford, CT.

Again, thank you all for the messages of support. We appreciate every single one of them.

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.

Today, Monday December 17, 2018 at 4:55 PM EST, Amber left this world and entered Heaven. Amber died peacefully, nestled in the arms of her Mom, with her Dad at her side and her siblings nearby. She has no more earthly worries, no more cancer, no more weakness. Her only concerns now are eating marshmallows and rehearsing with the Choir of Angels.

We’ll write more over the next few days, but for now, this is just about all the energy I can put into writing.

The title of this post was was chosen by Amber – as Caron and I were reading the draft and coming up with titles, Amber gave us a definitive “yeah” for this title.

After a 30 hour “nap”, almost completely unresponsive to us, overnight she started becoming more awake and aware – even through all the medications. This morning, she is talking with us – answering our questions, asking for water. It’s difficult for her to talk, and it’s very gravely, but it is intelligible.

She tells us that nothing hurts. That she wants chocolate milk. That she is really tired. That she wants to “go to the party”, and she invited Mom to the party too. And she scolds her brother or sisters if they make a loud noise. And, when she has had enough of our questions, the next one of us that asks “Amber?” gets only a very sharp and annoyed “WHAAAT????” in response. That sass continues right to the end.

And she asked to get up, out of bed, so she is comfortably relaxing in our living room right now, with her brother and sisters, Mom and Dad all near. She is in Caron’s arms, on the couch, snuggling.

We are happy to have these additional minutes and hours with her, but we are sad in knowing what is coming soon.

She continues to be comfortable, we continue to wait and pray.

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.

Amber is comfortable, sleeping, still with us for now. She (and we) will not be attending Mass this evening to receive her First Communion.

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.

Just a short update this morning.

We are going to stay at CCMC another night. Amber did well last night (well, at least as well as someone can do when being woken up every hour for checkups), and the steroid seems to be helping relieve the pressure. The steroid isn’t a cure – it reduces the brain inflammation, but does nothing to the tumor. So we are still assembling the plan, collecting options given the current state of things from various hospitals and medical centers and hope to have something more to work with tomorrow. We’ll post more as we figure it out.