~ 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.

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.

Amber is home with us, happy and comfortable. However, after a number of discussions with the doctors, we have come to accept that this disease is progressing extremely rapidly, and there is nothing more that can be done to stop it. She is home with us right now and that is where she will remain until Our Father in Heaven calls her to his home.

We wish we had good news to share, but it is not. In fact, writing this, I am deeply struggling because there are so many raw emotions and thoughts swirling through us — our heads, our hearts, and our bodies — it’s all-consuming of our beings, and of our souls. My being . . . and my soul, was put here on Earth because of my children. I am their mother; their provider, their nurturer, and their protector. And as her parents, this is something that, no matter how hard we tried, we could not protect our child from.

We met with Dr. Gillan and Dr. Martin yesterday (Monday) around 10:30 AM. They brought us into a conference room with a couple of other nurses and a child life specialist. Dr. Martin pulls up the MRI from April on the big screen, which was taken shortly after the first surgery where the original tumor was removed, and then he pulls up the MRI taken this weekend to show us the comparison. The recent MRI will forever be embedded in our minds. Essentially, the entire right side of her brain has been overcome by this disease, this tumor, and the tumor and swelling is now putting pressure on the left part of her brain, skewing and compressing the relatively straight gap that splits the two halves of the brain into a curved hairline. You cannot even see the brain stem or the ventricles, as they have been compressed so significantly. With something like this, an aggressive Grade 4 Glioblastoma, it is hard to say how long Amber has. Dr. Martin indicates most likely days to weeks, but not months.

We’ve had so many doctors over the past few days as well as the doctors at MSK give a surprised “Huh” once they meet Amber, having just reviewed the MRIs before walking in the room, and we now really understand why this is their first word. They all expected to see a little girl in severe pain, barely functioning, and instead find a little girl breathing, talking, smiling, walking, not in pain, and still giving her parents sass like any 7 year old… how is this even medically possible? How is it that she is even still functioning?

Dr Gillan, Dr Martin, and the others at CCMC have learned much about us over the past 265 days, and were prepared to discuss this with us in the way they knew we needed. They were very direct with us, and walked us through what could be considered as options, but explained the downsides of each as they would impact us. The images and records have been reviewed by many doctors at several institutions that we trust, and there is agreement on the options (or lack of) currently available. One option was surgery to remove half of her brain, which is very risky and very likely leaves Amber with a very low quality of life – and, doesn’t cure her of the cancer, just buys more time to find a cure. Another option was to take a chance on another clinical trial, knowing that the trial we did already try was the “most promising” and did not work, and that the only other potentially viable trials will require significant travel, meaning a very high likelihood of Amber leaving this world while she is in a foreign place, nowhere near the people she loves most.

Or, the option that we have chosen – to go home and have her with us, keeping her comfortable and happy, enjoying what time remains with the people who love her. We struggled greatly with this, so much more than I can express here, but have decided that this is the best and only option that makes sense — Home here with her family before going to our ultimate home in Heaven.

Amber is doing well right now. She is very tired, sometimes continues to complain of a mild headache over her right eyebrow that comes and goes, and her right pupil is still a bit larger than her left. The hospital sent us home with anti seizure medicine, steroids, and stomach medicine. Amber might be capable of going to school, but due to her increasing tiredness and not knowing when symptoms may strike, we just feel that it is best for us to be with her at all times. We will have Hospice at our side, and are being educated in pain management. We will make sure she remains happy and comfortable, to the end.

We selfishly want our baby girl to remain here with us on Earth. We know she could change this world for the better. Heaven knows we need that. At first we were mad that what we’ve been praying for didn’t come true; for Amber to be miraculously healed and cured of brain cancer. But perhaps, we actually did have a miracle. Perhaps Amber was supposed to leave us on March 22nd, 2018. But instead, was given an extra 9 months to be with us and to enjoy our time together. And for this time we’ve had, we are truly grateful to God.

Matt and I ask that you still pray for Amber. Pray for her to get through these next days to weeks with comfort and peace, and to embrace the new life that awaits ahead.

We have been in contact with Dr. Gillan from CCMC and she has some backup plans in the works. One possibility is two oral medications: Chemo and a medication that will target GBM stem cells.

And meanwhile still, Dr. Gillan and the doctors from MSK are investigating other potential clinical trials.

We are grateful to have MSK and CCMC working with us, joining us in the fight. But still …

… I’m trying to be open minded and I’m trying not to be mad. But right now, I’m angry, sad, defeated, numb, exhausted, heart broken. This sucks. This sucks BIG TIME. This poor little girl. For what happened to her 8 months ago to what’s happening to her right now. It’s hard to hang onto hope when “hope” is literally a tiny little shred of a string . . . that’s fraying . . .

One of the best Halloween’s ever, why?  Because Amber is HERE.  Here to enjoy it.  Period.

MRI

Monday is the day.  Her much anticipated MRI.  Not sure what it will show —  1 tumor the same size? 1 tumor, bigger size?  1 tumor, smaller size?  OR maybe — Multiple tumors?  Or maybe — no tumors?  Perhaps it’s too soon to actually see a “difference”, or then again, maybe not.  No matter what, Monday is the day — The Truth Machine will show something one way or the other.  Please pray for us . . .

There is a Holy Hour for Amber at our church — Saint Mary Church in Baltic, on Sunday, November 4th, from 7PM-8PM.

And just a side note.  November 4th is also my birthday.  I’ve already received my very special gift:  Amber Grace, alive and kicking.  But I want more.  I bet you know what I’ll be wishing for when I blow out those candles . . .

The past few weeks have been moving forward with our new normal of weekly routine visits to NYC with MSK (Memorial Sloan Kettering). Amber’s blood work and other routine checkups have been good/normal thus far. Really the only thing that Amber has been complaining about, other than not wanting to go to New York, yet again, is small headaches above her right eyebrow that come and go. The doctors are aware but it doesn’t make it any less scary wondering what exactly is going on inside her brain on a day by day basis; is the pembrolizumab doing it’s thing or is the tumor getting bigger?

This week we return to NYC and MSK on Tuesday for her second infusion. In a couple of weeks is her MRI. Of course Matt and I are trying not to freak out wondering what we are going to see for the results. Honestly, if we could get a daily MRI, we probably would! We are just praying that the tumor isn’t growing out of control and/or that other tumors are making an appearance.

All we can do is pray for the best possible outcome for Amber, Heaven knows she deserves it.

Thank you for the continued thoughts, prayers, and support for Amber and our family!

6 months ago, things were just as they were supposed to be; the hustle and bustle of our normal life with it being pretty near-perfect.

6 months ago, that pretty near-perfect life, it changed quite dramatically. It was life-altering.

6 months ago, Matt and I thought we had lost one of the most important — most special things in our life, Amber.  In those first few days we thought that was it, that she wouldn’t make it through — or, if she did come through, Amber would be forever different, and not our “Amber” that once was. Those first few days were the hardest with grim thoughts swirling through our heads. One of those thoughts — not seeing Amber celebrate another birthday, ever. It’s dark and it’s sad, but as humans, it’s what our brain does. It tries to process the moments and put the future into perspective. But how different things turned out to be — God wasn’t ready for Amber to come home to Heaven just yet.

God has a very special plan for Amber, one that I believe has already, and is currently taking place. Our little Amber Grace has brought us all together. Family, friends, and strangers alike. We have, and are, coming together in our Faith and in our Hope. But God’s plan is beyond that. It’s simple yet complicated. So as we’ve all been brought together, my question is, what’s next in His grand plan? I hope it’s as simple as — Amber is cured by this clinical trial, which in turn gets this drug easily to other children to help cure them too. But God is mysterious . . . He may have other intentions. What I hope and pray is that God’s plan includes Amber celebrating many, many, many other birthdays here on Earth.

6 months ago, in those first few horrible unknown days and sleepless dark nights, Matt and I never thought we’d be sitting here, right now, eating Amber’s special birthday dinner of tacos, singing “Happy Birthday” to her smiling face, enjoying a piece of her delicious cake, and watching her excitedly open up her birthday gifts.

Thank you God for this extra special birthday day. It is truly a miracle that our Amber is alive and is enjoying all there is to enjoy about celebrating — especially, another year of life.

“Look at Lefty Mom!”

THANK YOU.

Superheroes pay it forward . . . and then some . . .

On behalf of Miss Masucci, Mrs. O’Neil, Amber, and myself, THANK YOU.  Because of your extreme generosity — out of the 50 shirts that we were hoping to sell, we sold 74!  And not only did we sell more shirts than we were hoping, but that mixed with the generous donations we’ve received, we’ve exceeded our initial expectation!  Because of you, we are up to $1040 — and all before our end date of October 4th!!!  How helpful for Connecticut Children’s Medical Center’s Cancer Unit!!!  WOW!!!!

If you would like to purchase a shirt or make a donation, there’s still time!  Please go to the donation page.

Matt and I pray that we are going the correct way with all of this.  We pray that God’s plan is this one, and that he is gently nudging us towards where we are supposed to be going.  Amber’s Way is God’s Way and we pray for Big Hope in the Big Apple.

Matt and I have often written our posts in detail about our Hope and Faith, and other positive things we try to draw from all of this.  But we also feel immense sadness.  We want to share some of that sadness, in very raw truthful detail below.  We know that many are going through this with us, or experiencing this (or something similar) in your own lives and families, and can empathize with the same deep sadness.  This is the emotional highs and lows, spiritually and physically, of an incurable disease that a loved one is battling.

I know Matt posted a few days ago about our feelings, but I can’t reiterate it enough. Sometimes, the sadness is all-consuming.  It’s been very emotional and trying on Matt and me.  We honestly struggle every day.  It hurts us so deep for our youngest daughter to have to go through something like this . . . for any child to have to go through something like this.  For Amber though, she is the coolest of cool.  This spunky girl is so laid back and nonchalant about everything it makes me wonder if she honestly understands the severity of what is going on in that little noggin of hers.  And truth be told, yes — yes she does understand it, almost completely, at a six-year old’s level.  When we ask her, she tells us she knows she has cancer, and that she has a tumor regrowing inside her brain.  She tells us how we are going to be making lots of trips to New York to go get medicine to (hopefully) make the tumor go away.  She ‘gets it’ all too well with a mature understanding that is quite remarkable for a (just about) 7 year old.  She gets it all, almost.

One thing that I don’t think she quite grasps OR RATHER, perhaps I am too scared to even ask her, is if she knows that her cancer is deadly.  Ugh, even just writing that word makes my eyes swell with tears.  We’ve talked about death in our house at times, especially when loved ones pass away, which unfortunately for us, is all too recent with the passing of my cousin this past December and the passing of Matt’s younger brother two years ago.   That was tough on the older kids especially, but also understandable for them in the grand scheme of things; there’s life, and then there’s death.  But to have to talk and speak freely about the fact that, according to the research and statistics, Amber is probably going to  . . .  (not survive).  How do we do that?  We’ve talked about it with the older girls (which I’m not sure they even get the magnitude of (yet)) but how does one have THAT conversation with the sick child that is so innocent and young in all of this?  How?  A beautiful little girl who is not so little anymore, growing up before our eyes, even with this behind-the-scenes horribleness growing inside of her.  Amber’s at a point in her life now where the years are more meaningful because they are the youthful years that will stand out and will be remembered.  Great, wonderful, and fun moments and experiences of her life that she will hold in her memory and heart for years to come.  But How?  How to tell her that she’s probably not going to make it past a few more years?  Or that she’ll probably never experience high school or college?  How?  How do we tell her that she’s probably not going to fall in love, and get married, and have her own babies to take care of and love?  How do we tell her this? . . . How?  

I’m not actually looking for anyone to give me answers, because I know when the time comes, Matt and I will figure out what to do.  Really, I’m just venting.  I’m stomping my feet, screaming loudly, and beating my fists against my sides having a grown-up tantrum about why life is so unfair.

Cancer and Death.  That should NEVER EVER have to come up in a conversation with a beautiful innocent child.  The thing that hurts the most is simply knowing all of the good, the beauty, the glory of what Life is — especially with these upcoming milestone years — that she is probably never going to get to experience any of it.  She’s being short-changed a potentially amazing life, and that sucks, big time.