~ Happy 7 ½ Birthday in Heaven Amber Grace ~

Life Doesn’t Stop After Death.

How dare life keep moving forward after the death of Amber.  It should be stuck on pause — that horrendous day.  It should be paused until Matt and I are ready for it to continue moving forward.  There should be no laughter or smiles or happiness.  How could there be when something so tragic just happened?  What a cruel joke life plays on us though, because whether we want to pause things or not, life still moves forward and it doesn’t wait for our permission to do so.  Life just keeps on going, even though we’re broken.  Life forces us to move forward.  It forces us to put our broken pieces back together and try to figure out this “new” life without Amber.

As our family scrambles around looking for each and every broken piece to glue back together, there will always be those little tiny missing pieces that you just didn’t find.  And this “new” life is never fully put properly back together or perfectly complete; nor will it ever be again.  And that glue that we used to place each piece just so — is now the only thing filling the gaps of where our missing pieces were supposed to go.  Those gaps will forever be vulnerable and fragile.  And if this broken life is somehow put back together again, it will not be worth the same as the original; it will never be completely perfect ever again.         

And while we struggle with mending our broken family, I’m pretty sure Amber’s new life doesn’t stop after death either, and I’m pretty sure her new life is, without a doubt, Spectacular.  A couple months ago, a very dear Aunt of mine shared with me a vision she had of Amber.  She told me that Amber asked her “why is Mommy so sad? She helped me get to be with God . . .”  My Aunt said that the way Amber said it was that of like — how could there be any question of (mom) still being sad — because she (Amber) is with God.  So my Aunt said to Amber “she is sad because she can’t see you anymore.” To which Amber gave a little shrug of her right shoulder and said “but I am always with her…”  

It brings my heart and soul peace knowing Amber is where I can only hope and pray to be one day, when it is my time.  And each day brings me closer to seeing my beautiful and precious angel again.  Thinking that way makes me feel giddy, like when I was a kid and seeing the Christmas tree surrounded by beautiful unknown gifts on Christmas Day.  The beautiful unknown gift is my life leading up to seeing Amber again.  And when I finally get to see what’s inside that beautiful gift — it will be the ultimate homecoming!

And honestly, in the grand scheme of things, Amber is truly the lucky one.  She is in Heaven with God, and Jesus, and Mary, our cat Mo and her Uncle Ned.  They are in Paradise surrounded by love and light and they still get to be with us in our hearts and in our minds.

3 weeks ago at my family’s annual reunion, I was reminded by my mom about the day we told our kids that their Uncle Ned passed away.  It was August of 2016. We were in our hotel room, at the end of what was supposed to be the most magical trip for us all: a  Walt Disney World vacation with all the bells and whistles.  At the time, Marie was 10, Brianna 8, Amber 4 ½, and Ryan 1 ½.  Marie and Brianna understood and took their Uncle Ned’s passing the hardest.  Ryan was too young to understand.  Amber however, even at the age of 4, was wise beyond her years.  While the rest of us were all crying and embracing each other, Amber said to us “I don’t understand why you are all so sad, Uncle Ned is up in Heaven and he is happy . . .” And after she said that to us, she proceeded to hug each and every one of us.  It was pure innocence and pure truth.  How could I have forgotten such a moving and defining moment?  And how omniscient and foreshadowing of the future.  Amber’s statement of her Uncle Ned paired with my Aunt’s recent vision of Amber leaves no doubt in my mind that they are in Heaven with God.

So I end this post with some of Amber’s own sentiment —

Why are we so sad?  Amber’s up in Heaven, and she is Happy . . .

2018 was the worst year of my entire 39 years.  Throughout my life there has been the normal up and down days along with the good and bad days.  But none could compare to Amber’s death.  Not in a million years did I ever think to myself that Matt and I would have a child that, all of a sudden, is sick.  But not just sick . . . cancer sick, and not just cancer sick, but the type of cancer that would most likely kill her . . . and on December 17th, it did.  However, no matter how sucky and crappy it was for Amber and our family to go through this, I can say without hesitation that Amber died with Grace.  She should have died on March 22nd, 2018, but she didn’t.  With the Grace of God and endless prayers, Amber was granted a total of 9 extra months with us.  And while she went through the works; several brain surgeries, several regular surgeries including a vascular port and g-tube, her re-learning how to use her left side, the countless MRIs, radiations, numerous trips to NYC, all this while attending school, PT, and OT — Amber did it all with Grace.  Those hard yet special 9 months were fulfilling to our family, and God knew we needed that.  Some may question why Amber still died even though we prayed and prayed – I know we have.  God is Mysterious and God is All-Knowing.  God has an exact plan for each and every one of us, and our questions will be answered on our own judgement day.  God’s exact plan was always for Amber to be with him sooner than later, but to do so without pain and suffering.  God also allowed her to have those extra 9 precious months with us, and THAT is how our prayers were answered.

Today also marks 3 months since Amber was laid to rest.  Amber endured a lot over the course of those 9 months but everything she went through during her entire short 7 years ensured her a special spot in Heaven.  And although not here physically with us, she will still be a great part of our lives.  She gets to observe it from the best seat in the house — Heaven — watching how her family and friends’ lives progress.

The biggest goal in my life was to meet my soulmate and have children with him.  I knew I was put on Earth to be a mom.  Some people thought we were crazy for having so many children; their views like — the world is already overcrowded OR the world is a crummy place to raise even 1 child.  My response to that was that I knew the type of children Matt and I would create; children that would change the world for the positive. I didn’t realize that that would mean one of our children (who was an actual child) would achieve that goal so early in her life, by losing her life.  Amber was created by taking the best parts of Matt and mixing them with the best parts of me.  And when Amber died, those parts of Matt and me died too — but not without some positive impact all around. Amber Grace has changed the world by touching so many lives. She has brought so many together, and has changed the world for the positive.  

There was a school assignment in the beginning of the school year about who your Superhero is.  Amber wrote that her Superhero is herself with her super powers being Faith and Love.  Amber, without a doubt, was certainly a Superhero and she clearly has fulfilled her destiny on Earth by spreading Faith and Love, and continues to do from her special seat in Heaven.

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.

This past Friday, December 21st, was Amber’s wake. On the ride there Matt and I looked at each other and asked ourselves if this was for real. Were we really riding to a funeral home for one of our children? Surreal. The whole thing is just surreal.

The wake was beautiful and touching. Amber looked absolutely angelic, surrounded in white from her 1st Communion dress, her veil cascading down over her shoulders, the white of the silk lining in her casket and the polished white of the casket itself. She sparkled from her tiara veil, her beautiful necklaces, bracelets, and ruby ring, with her purple rosary beads weaved in/out of her little hands. The casket was surrounded by gorgeous candles, poinsettias, and purple flower sprays and vases — and a gorgeous pine wreath with pink ballet shoes made of flowers that took our breath away. Amber must of loved this set up because there she lay, with just a hint of a smile on her little angel face.

The funeral home was adorned in things that were Amber. Two huge picture collages, Supergirl dolls and a Supergirl bracelet, special mementos from Amber’s prayer table at home, like her rosary beads from Rome, were spread throughout the funeral home. And there were other meaningful pictures too, and candles with sparkly purple hearts that made the funeral home setting more personal with these special touches of Amber.

The wake was set to start at 5PM and go until 7PM. However, because the weather wasn’t the best, and apparently the line was growing longer by the minute outside (so we were told), we decided to let our guests in early, about 4:45PM. Once we received the first person, we did not have a break again until our last guest around 7:45PM (45 minutes later than we expected). Matt and I looked at each other at one point and said that we didn’t even realize we knew this many people!

Wow . . . Matt and I, we are so humbled, we are so touched. Thank you to everyone who took a moment (a long moment especially when waiting in the rain) to come and give us your support, your sympathies and condolences for our little girl. It was so meaningful to us. We could just feel the love and emotions that were felt for Amber. Thank you so much.

We shared many tears through the night. But at the same time, we also shared many smiles and hugs. In a weird kind of way, this was one of the less tragic times of the past few weeks. Matt and I have found some solace in knowing that she isn’t fighting her battle anymore, that there is no more discomfort, that we don’t need to worry for her future condition, and instead can “just” feel the sadness of her not being here with us. It’s weird, but it does allow us to smile, to talk more about the love we have shared with her instead of dwelling on the disease.

The next day was Amber’s funeral. Saturday, December 22nd, 2018 — exactly 9 months to the day when ALL OF THIS started. What an appropriate way to end a journey, I guess.

I may be partial but Amber’s funeral was one of the most beautiful and perfect funerals I have ever been to. The spirituality of the whole thing was amazing; the alter lit up with candles and decorated with flowers; the pews filled with people who love Amber; our dear friend Angela lecturing; Father Tito’s homily; Marie, Brianna, and Ryan bringing up the gifts; and the music — oh, the music was just so moving. Sister Mary Patrick, Amber’s principal, and friend, helped us invite the Sisters of Charity of Our Lady Mother of the Church Choir as well as the Franciscan Sisters to make Amber’s funeral complete. It was magnificent.

Hearing the music and the Sisters singing, made me think of what Angels must sound like. Amber knows personally what the Angels sound like. Back on April 29th, on a night where a Holy Hour was going on for Amber at our Church, I was with her in the hospital. Just after 8PM that evening, after her and I were done saying our prayers knowing our friends and family were also saying prayers too, Amber turns to me and says “Mama, I hear the Angels singing…” What do you mean you hear the Angels Amber?” Is it loud or soft?” I ask. “They are singing softly, and it is SO BEAUTIFUL” she says. “Why do you think they are singing Amber?” “Probably because I am a sick person in here” she says. “Well, Amber, I think you are very lucky to be able to hear the Angels, not many people ever get to, I wish I could hear them too.” I said. Suddenly she blesses herself and puts her head down as if in prayer. “What are you doing Amber?” I ask. “I just said a prayer asking that you can hear the Angels too Mama.” she said.

Maybe one day I will hear the Angels singing, especially since Amber is an Angel among them. I have no doubt in my mind however that our little Amber Angel was singing right along with the Sisters this funeral day because it was just so beautiful and amazing. You could feel in your Soul how special and wonderful this day truly was.

After Mass was Amber’s burial at The Saint Mary Cemetery with our family and close friends.

To all of our friends and family, thank you. Thank you for making this journey with us and thank you for supporting and helping us through some very low lows and very high highs. Amber is at Peace. She is in Heaven. And she is watching and praying over all of us. Amber Grace Smith . . . she is the Lucky One.

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.

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.

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

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.

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.