I wish I could say that I came up with the concept but I did not. All credit goes to Amber’s teacher, Ms. Masucci, and administrative assistant, Mrs. O’Neil, at Saint Joseph School. They are selling t-shirts they designed to support the Connecticut Children’s Medical Center (CCMC), as a way to “pay it forward” for the incredible care they provided to our Supergirl Amber Grace. All proceeds will go to the Center for Cancer & Blood Disorders at CCMC, to help further their research toward finding a cure and continue their fantastic care so that Superkids like Amber can have a healthy future.

If you are interested, you can order the shirts on the donation site.

Orders are due by October 4th (which is coincidentally Amber’s 7th Birthday).

Thank you so much to Ms. Masucci and Mrs. O’Neil for taking on this initiative on behalf of Amber.

Thank you!

Sometimes the thought of why we pray comes across my mind.  For me, praying is the natural thing to do when something is heavy on my heart or I want to give thanks to God.  In praying I find there is Hope.  Hope, when all else feels lost.  Prayer for me is a direct connection with God, and it fills my soul with a sense of comfort and encouragement.

I know that Amber is a strong, determined, feisty girl.  I know how strong she is, I’ve seen her, (and still do see her), in action.  However, I truly believe in my soul and in my heart that Amber’s strength and determination is nudged by all the prayers being said for her.  I genuinely believe in prayer.  The proof?  Aside from the obvious — she is here with us, on Earth, after such a devastating start to this journey  —  but the fact that she went back to her own school this past Monday.  Saint Joseph School.  More proof?  The fact that she walked into her school, and talked with her friends, and did her class assignments.  That my friends, is a miracle — all due to hard-work, determination, and . . . prayer.

 

5 months ago, when this all first happened, I never would have thought I would be writing a post about Amber going back to school.  At that time unfortunately, my thoughts were very grim.

But this Supergirl has made exceptional strides — leaps and bounds!  Of course, she still has a bumpy road ahead.  Regaining the parts of herself that are still weak and worse, continuing to fight the cancer within.  However, with her continued perseverance she will succeed.  Prayers have gotten us through the darkest of times and the happiest of times.  And sometimes there will be situations where we will pray with a little more angst and passion.  We have one of those coming up.  This coming Friday, September 7th, is Amber’s next MRI.  It is unfortunate that with Amber’s type of cancer there will always be the on-going threat of recurrence.  I pray, and I ask you to pray, that this cancer stays away, that it continues to be in remission.  So I ask of you, my friends and family, to please pray hard for Amber this upcoming Friday.

 

There is a Holy Hour for her on Wednesday, September 5th at 7PM.  Due to another heat-wave,  the Holy Hour will be in held in the Chapel (where it is air-conditioned).  The Chapel is located in between St. Mary’s Church and The Academy of The Holy Family.

Thank you!

Warning — The blog post you are about to read is long.  Like, really long.  But how does one write a short blog post when so much cool stuff happened to us on our big trip?  Of course I have to include all the details so that readers like you can live vicariously through us!  So grab a comfy seat, perhaps a snack and drink, and enjoy!

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The Make-A-Wish Foundation is an organization that grants “wishes” to children with life-threatening medical conditions.  We have known about this organization prior to Amber because we have some family members that have had wishes granted.  However, when I first heard that Make-A-Wish wanted to meet Amber and get to know her, I cringed.  Thoughts like ‘I can’t believe this is so serious that Make-A-Wish is contacting us…’ and the ‘never thought it would happen to us’ went through my mind, and still does.  The initial shock that, here we are, Matt and I, at this point in our lives where we are dealing with a child that is seriously sick is hard to swallow (still).  But they really wanted to work with Amber and grant her wish(es).  And we’re so glad they did.

Make-A-Wish is an absolute superb foundation.  Hands Down.  What I am about to share with you will have you understand why.

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Aloha!

Friday, August 10th, 2018 had us start off very very early by serenading our oldest daughter Marie with a “Happy Birthday” song, as she was turning 12 this very day.  Later on we had our “ride” come pick us up to bring us to Logan Airport in Boston.  Our ride turned out to be a beautiful black stretch limo!  So big in fact that we told him to stay down by the road because our driveway would be too hard to maneuver with it being long and curvy.  Amber needed no help as she climbed into the limo, beaming ear-to-ear!

After drop off at the airport, with our Make-A-Wish shirts on, we had some assistance from the JetBlue personnel helping us navigate through the security checkpoints and showing us to our specific gate where we waited for our plane.  Now, this is all four of our children’s first time at an airport and first time flying.  It could have gone really really bad.  But in fact, it went amazingly!  They seemed like old pros!  In fact, they did much better with all the travel (twelve hours in the air in each direction!) than most frequent fliers I know!

As we are on our descent into Honolulu, with the sunset casting its last shades of yellows and oranges, I started rousing Amber and Ryan as they have both fallen asleep on me.  We gathered our goodies that were given to us special by the flight attendant because of our reason for being there that day as well as him getting to know Amber, and we head off the plane.  As we were leaving, the pilot comes out to say hello and give the kids “official” passport books and their very own wings.  As we were heading to our gate, Matt and a man he befriended on the plane, Officer Jones, were chatting and he tells us about how he’s been serving our Country and that he is coming home to O’ahu to see his baby girl and wife.  He says he loves the Make-A-Wish Foundation and asks to take a picture with us.

After we were done taking the picture, the flight attendants from our flight pass by and come over for a “GROUP HUG”!!!  We all get in there for big hugs — and why not?  We are all happy and in good spirits, how could you not be being in Hawai’i?  After officially getting our leis, we are whisked away to a van that is waiting to bring us to our hotel.  It takes only about 40 minutes from the airport.  I am surprised that everyone actually stays awake – because while it may be only 8PM in Hawai’i, our bodies think it is 2AM CT time.  It’s either the good naps most had or just the sheer excitement of us being in Hawai’i and anticipation of getting to our resort, Disney’s Aulani.

 

We arrive at Aulani and are greeted with more leis and really cool Menehune necklaces for the kids.  Legend has it that the Menehune are little mythical pranksters in Hawai’i but if you are wearing the necklace they will consider a you “foa” (friend) and not trick you.  Ryan took this very seriously the whole week we were there!  We are then brought up to our room.  The room is spacious and beautiful.  It has a kitchen with a full fridge, microwave, dishwasher, glassware, plates and utensils.  A living room with a sofa that pulled out, a chair that pulled out, and a lanai.  2 bedrooms:  the first having 2 queens with it’s own bathroom and lanai, and the second being the master with a spacious bathroom with a jetted tub and walk in shower (with 2 shower heads!) and of course, our own private lanai.

In addition to all this, there was also a 1/2 bath and a washer and dryer!  Our lanais were perfect for seeing the picturesque ocean as well as Luaus!  The Luaus were held right below us on the green.

Disney’s Aulani Resort was themed like I would expect Hawai’i to be –

very ornate, with lots of wooden/natural decor as well as beautifully hand painted Hawaiian wall murals that locals painted.  The landscape was lush with tropical flowering plants and bushes, palm trees, koi ponds, and lit tiki torches at night. The resort had an abundance of pools, infinity pools, hot tubs, a lazy man river, water slides, and my favorite, access to the beautiful beach and Pacific Ocean.

It was hard to break away from the resort but sometimes we did.  On our first full day there we spent a good amount of time down at the beach and then some water park time.  After a while, it was time to leave for church.

We hired a driver and he took us to Saint Jude Church in Kapolei.  Saint Jude?  Really?  Talk about things that sometimes just make you go “Hmm”.  Very fitting I would say!  A very welcoming and friendly church and church community.

The next day (Sunday) was set up for us to visit a place called Sea Life Park.  The drive was about an hour but totally worth it.  The scenes that passed before my eyes were wonderful.  Greenery, mountains, tropical plants and bushes, and of course the gorgeous coast line.  I am very thankful for that long car ride because we got to see quite a bit of the the island of O’ahu, even passing the famous Sandy Beach, with all the surfers in the water.  Not sure if kids were too thrilled because the two oldest fell asleep!  But Amber was glued to the window watching the scenery the whole way.

Sea Life Park is awesome!  There was so much to do!  We got to experience seeing ocean and animal life native to that part of the world.  Sting rays, sharks, fish, dolphins, sea lions, penguins (yes, we saw penguins in Hawai’i!) and birds.  The aviary was the coolest and a favorite among Brianna and Marie. Inside the aviary, you got to pick up a popsicle stick with bird seed on it and feed the birds.  We were in luck too, because sometimes, the birds would land on your stick so you could observe them up close and personal!

And, what’s even more lucky, is when the birds actually land on you like they did to both Brianna and Matt!  So cool!  As we were walking along and checking everything out you just had to stop and take in the views and the scenes because they were breathtaking.  After an awesome dolphin show it was time for Amber and I to get into our bathing suits and go to the Dolphin Encounter, which was set up for us by Make-A-Wish.

 

If you ask Amber what was one of her favorite parts about this vacation, she will tell you it was meeting the dolphin!  It was the coolest thing ever!  We got to pet, feed, kiss, get splashed by, and dance with a dolphin named Eanka!

 

Later on in the week, Make-A-Wish set up a program for the children to attend called “Fish are Friends” where they got to make special fish food, feed the fish around the resort, and learn all about the native fish.  The kids enjoyed making fish food and feeding the fish – but we had to chuckle when they told us it was too “educational” to do on vacation!!!

Throughout our vacation we had the opportunity to meet some Disney characters.  Amber was really looking forward to meeting Moana, which we did, and Ryan was really looking forward to meeting Pluto, which he did!  The kids also got to meet Mickey, Minnie, and Goofy.

One of the things that I was most looking forward to was being able to witness, first hand, a Hawaiian sunset.  I have always heard about them but didn’t think I would ever have the chance to see one.  Now Matt can tell you that my thing is sunsets and sunrises.  There is just something so special, and so glorious about them.  The way the colors explode and cascade and melt together, it is truly a gift from God for us to witness.  However, up until this point, I hadn’t experienced that yet.  And my evenings were coming to an end.  I caught some sunsets over the first few days, and they were pretty, but . . . it wasn’t thee Hawaiian sunset I had envisioned in my mind.  Okay, so it’s very possible that my expectations were either too high or maybe I was just in the wrong spot at the right time.  And luckily for me, it was the latter.

After a day of water park activities in mostly cloudy weather, my expectations for catching a sunset this night was really low.  It was my last potential night because tomorrow night, our last night, we had a Luau planned for the kids.  So this night was my only opportunity.

At around 6PM that evening we took the kids down to the beach for some pictures.  I wanted to get pictures of a beautiful-magical Mer-Fairy named Amber Grace (another wish she had) and her beautiful-magical sisters.  As I was getting some shots, the clouds had parted away to let a bit of the sunset shine through.  When we finished up, I felt a pang of let down.  Again, the sunset was pretty but not what I was hoping.  Matt suggested I walk down the opposite side of the beach to an area that had a curve around it with a hill and jutted out point — and boy am I glad!  As I started walking down the beach towards the point, I had to stop, stare, and pull my camera out because it was so beautiful!  I grabbed Ryan’s hand and we started walking further down and up the hill, even closer to the point and every so often I had to just stop, because literally, the words “WOW” came out of my mouth. THIS is what I wanted, this is what I had envisioned — NO —

actually it was so much more than what I had envisioned . . . it was breathtaking and it was immaculate and it was glorious.  To the point where once Ryan and I were at the top of the point watching this magnificent cascade of colors in front of us, I had to say a prayer to God.  I had to thank him for everything;  for this moment, for us being here in Hawai’i, for Amber being alive today and here today with us; for Amber’s health and that if somehow she could be miraculously healed and cured of cancer; and for my children and for my husband, and for all of the people on my prayer list that are in need of something right now.  Thank you God for allowing me to witness such spectacular beauty.

 

 

Towards the last day of our vacation, we found ourselves, once again, hooked up by Make-A-Wish with our own personal Meet and Greet with none other than Mickey Mouse himself!

We got to hang out (just us!) and get lots and lots of pictures with Mickey!  Later on that evening, Matt and I took the kids to that infamous Luau we kept seeing from way up on our lanai.  We totally had to check it out!  I am so glad we did.  It was so much fun!  They had traditional Hawaiian fare as well as a show.  The Hula dancers and story tellers did an amazing job of mesmerizing us with the music, songs, and stories of the Hawaiian people.  In the story they tell of the history of Hawai’i as well as what a deep impact our “ohana” (family) has in our lives and that Aloha does not only mean Hello and Goodbye but also the love that we hold inside of our hearts.  And that is what we experienced this week in O’ahu, Hawai’i.  The love that we hold in our hearts, especially when it comes to our family.  And by the end of the night, Ryan was asleep in Matt’s lap, and Amber enjoying the show in my lap.  It was a beautiful way to end our trip, with our ohana.

 

Make-A-Wish made a life-time of memories with this extraordinary trip to Hawai’i.  We are so blessed and so extremely grateful for their generosity.

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And now…it is back to reality.  And reality being — SCHOOL STARTS TOMORROW!!!  School starts tomorrow for everyone.  I am so happy to announce that Amber will be going back to her school tomorrow, at Saint Joseph School!  And also, because I said everyone, I also mean Ryan too.  And as I am typing this, I am trying not to cry because my baby, Ryan, is actually starting Pre-K tomorrow.  When did my baby get big enough to go to school?  This is crazy right?  Geesh!

Also, if you could please send positive thoughts and say extra prayers for Amber, her next MRI is scheduled for Friday, September 7th, 2018.

And lastly — a BIG ALOHA from our family to yours!!!

 

Did you really just read it all?  The whole post?  Congratulations!!!  It must be what, like 2 hours later? 

We so appreciate all of you that have taken the time to read about Amber’s journey, and spent the energy to send prayers, thoughts, and well-wishes for her and for us.  Thank you  😉

 

 

 

Sunday, August 14th, 2016

It was 2 years ago, on this very day where Matt, the kiddos and I were celebrating our “biggest and grandest” summer family vacation yet — our first official trip to Walt Disney World with all 4 children! No cares in the world and the only thing we had to worry about is, what should we do next? And on this particular day, Sunday, August 14th 2016, was our extra special day because it was our Magic Kingdom Day. Extra special because before we could make our grand entrance to said Magic Kingdom, we had to prepare ourselves (and by ourselves I mean the children) appropriately. So, earlier that morning, we had all three of the ladies get all dolled up at The Bibbidi Bobbidi Boutique. The pampering and primping took three already beautiful girls and transformed them into three beautiful princesses! And what of Ryan you ask? Don’t you worry — I had him covered. He was transformed into Prince Ryan! Now we were ready for our official magical day to Magic Kingdom. And Magic it was . . . at first . . .

After meeting Ariel, Belle, and Cinderella, it was time to have an actual proper royal lunch at Cinderella’s Royal Table where we would not only dine on delicious fancy foods but where we also got to meet so many other wonderful princesses. Towards the end of our royal lunch, Matt received a phone call and excused himself while the rest of us finished our delectable desserts. Unbeknownst to me, it was during this particular time frame that our magical world would burst.

2 Years ago on this day, Sunday August 14th, Matt’s younger brother passed away unexpectedly. It was devastating and it was gut wrenching. When Matt pulled me aside, outside, after our special lunch to tell me the news, it felt as if someone poured ice water over my body. It made me numb. Still to this day it almost seems insanely comical that his passing happened on the same exact day where our family was celebrating in a place that is known as “The Happiest Place on Earth” — this happiest place on earth with all four of our children, surrounded by a glorious day of sunshine, laughter, and magic — now turned to darkness, crying, and sadness. It only takes seconds for a perfect situation to turn devastatingly awful.

Fast forward almost 2 years later . . .

On March 22, 2018 Amber had emergency brain surgery because of a previously unknown tumor that burst. I was too shocked to register anything at that time and knew I had to keep moving forward, for Amber’s sake. Then, 4 days later, when Dr. Martin told us the results of the pathology report: Glioblasoma Multiforme, Grade 4 cancer; I physically felt (again) that same ice water being poured over my head and body, that same icey-numb feeling I felt when Matt told me about his brother . . . and if that wasn’t a punch in the gut enough, hours later, Amber would be having her second brain surgery. For a family that has NEVER had as much as a broken anything — here is our youngest daughter having her SECOND brain surgery. Our family’s lives have changed dramatically forever; our youngest daughter recovering from not only a left side weakness due to the massive stroke from the tumor but also, and worst of all, she is now a child with a life-threatening disease. A terrible and devastating situation. However, for devastating situations there are glimpses of hope and happiness. For Matt and I, we found our deeper Faith. We also found a community of family, friends, strangers that went out of their way to help us, support us, pray for us, and encourage us when Matt and I were in our darkest place. Now fast forward to today . . .

Tuesday, August 14th, 2018

And here is the Twist Of Fate. Two years ago it went from a magical perfect day to misery and grief. Today however, Amber’s devastating situation brings us to paradise — O’ahu, Hawai’i (thanks to Make-a-Wish) and coincidentally enough, back to Disney. Although Amber’s future is unknown to us, what we do know is that God has her here, with us, TODAY. And today, we happen to be in a place that seems to be as close as we can get to Heaven on Earth; golden sun, sea breeze with swaying palm trees, tropical plants and sweet-smelling flowers, white sandy beaches with the most beautiful turquoise ocean waters you have ever seen . . . and the smell of the island, oh — perfection! Sweet and exquisite!

And even though right now we live with the shadow of concerns over Amber’s future health, what is very clear to us is that all of this is in God’s hands, it always has been. Nothing is perfect in this life; not a big trip to Disney World with all the frills and not one’s health. And although those things may seem meaningful and seem like everything at the moment, they are only bonuses. The real meaning is how you choose to live this life at every moment with the people you love.

Matt’s brother’s passing was dark on a bright sunny day. Amber’s health, although dark in the beginning seems pretty bright; pretty hopeful — especially with that golden Hawaiian sun shining down upon her. God’s sun.

How life can take us by surprise sometimes . . .  But good surprises this time.

We found Amber’s MRI this past Wednesday surprising in that she had nothing “new” going on.  She has Glioblastoma Multiforme which is an aggressive type of cancer, surely something should have shown up on this MRI, right?  There may still be something sinister going on that the MRI didn’t pick up, but even knowing that, I can easily say that I wasn’t the only one thrown off by Wednesday’s findings (or lack of).  Therefore, we offer to God, family (past and present), and friends, a big THANK YOU –  Matt and I are truly humbled by your outpouring of prayers and good positive thoughts for Amber.  Along with the tremendous medical care Amber has been receiving, the prayers and thoughts clearly have had an impact, and so we celebrate these results.

Then came Friday, and another awesome surprise.  Amber’s wish from Make-A-Wish has been granted.  Did I say “wish”? I should have said wishes because not only is Amber going to be swimming with dolphins, she is going to be swimming with dolphins in Hawaii.  And yes, I am still picking my jaw up off the floor.

Make-A-Wish is absolutely phenomenal.  They wanted a special way to reveal Amber’s granted wishes.  So, they had The Bridge Market Mobile Pizza Trailer come to our home to make fresh brick oven pizzas for us – cheese, pepperoni, veggie, and an incredible maple-bacon pizza.  Then there was the first dessert – Ben & Jerry’s came and set up a sundae station inside our house.  The sundae station had 4 types of ice cream, with Hot Fudge, Caramel, and Whipped Cream.  Then there were the toppings:  Mini M&M’s, Reeses Pieces, Oreos, Chocolate and Rainbow Sprinkles!  And THEN, there was the second dessert.  A gorgeous mermaid cake and cupcakes.  Make-A-Wish certainly knew how to spoil us!!!  How can a simple “Thank You” even suffice? . . .

 

 

Matt and I want to thank everyone who took the time out of their busy Friday evening schedules to come and support Amber (and us) at the Holy Hour.  Thank You!!!!

Amber is finding her way around all kinds of places this summer!  I’d like to share some with you —

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Let’s Ride!

Amber’s Physical Therapist Elyce got in contact with a man named Frank from an organization called “Save The Kid” where they donate specially designed bikes to kids with special needs.  So, lo and behold, Frank stopped by with a bike for Amber!  He also gave us a special hand strap for “Lefty” so that it stays in place when she’s riding.

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Salty The Unicorn!

Amber’s Occupational Therapist Michelle recommended a place in Windham, CT called Indian Hollow Stables, where there is an actual unicorn!  She thought it might be something Amber would be interested in — which she totally was!

 

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Stars & Stripes Kid!

Another super cool thing that happened in June is that Amber had the opportunity to be a Stars And Stripes Kid at the Connecticut Tigers Game!  GO TIGERS!!!!

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Amber The Mermaid!

Amber loves mermaids…like a lot.  So, why not have her become one?  Check this amazing bathing suit out!  She can’t necessarily swim with the bottom part yet but she will soon enough.

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Today is Sunday and in 3 days is Amber’s MRI.  I can’t believe it’s here already but I definitely want it to just come so we can get it over with and move on — whatever that means.

Her MRI is now a bit later than first anticipated so I’m thinking it’s going to be around 11 AM instead of 10 AM on Wednesday.  Regardless, we meet with Dr. Gillan, Dr. Martin, and Dr. Bertsch at 2:30 PM with the results.

Please pray for Amber.  Please pray for a clean and healthy brain.  Maybe even go a bit further and pray that she is miraculously cured and healed . . . I know I do.

Thank you  <3

This past week was extra special because we took our family on vacation.  The whole family; the six of us, together.  It was a vacation that has been planned since the beginning of February.  A vacation that very well should have been canceled given the tumultuous months following that booking.  Fortunately for us though, it was a vacation that was just meant to be — Amber is with us and is doing well AND it happened to be scheduled just right too, in between radiation and her next MRI.  It was the vacation that was just meant to be.

 

 

This year’s summer family vacation was to Ogunquit, ME.  A very quaint, small town bustling with all sorts of things to do:  beaches, shopping, restaurants, antiquing, hiking a mountain, a theater with Broadway musicals, art galleries, trolleys, etc.  This was the first time taking our family there as a whole.  Ogunquit has always held a very special place in my heart and it was time to share that with my own family.

We found ourselves at the beach a few times throughout our vacation and I can say for sure that it certainly helps soothe the soul.  The warm white sand beneath our toes, the ocean breeze, the ebb and flow of the waves . . . the children’s laughter, the scent of sunscreen in the air, the seagulls cawing — these wonderful things combined with our family getting to experience them together, that was soul soothing.  And when it was evening and we got to witness the sun going down and casting a beautiful golden hue reflecting off the ocean and the beach, that too was soul soothing.  A naturally gorgeous gift from God himself to help remind us just how precious and magnificent life can be.  Thank you for that God and thank you for having Amber be apart of this year’s summer family vacation.

 

 

 

Now we are looking ahead to the next significant thing, which is Amber’s MRI.  Her MRI is scheduled for Wednesday, July 25th, around 10AM.  This is our next big step in discovering what our plan of action is.  So now we pray, and we pray hard.  We ask that if you wouldn’t mind saying extra prayers for Amber near/on Wednesday, July 25th, that would be greatly appreciated!  Also, if anyone is interested, our friends have set up another Holy Hour for Amber’s approaching MRI.  It is scheduled for this Friday, July 20th, from 7-8PM at our Church, St. Mary’s Church in Baltic.

 

Thank you again for everything — your positive thoughts and prayers have had such a positive impact on her, and on us!

Never in my life did I think that I would be in a situation where (A) I would have to bring my youngest daughter for radiation treatments because she actually has cancer and (B) I am actually sad that today is Amber’s last day of treatment.  Crazy, I know.  Let me explain.  Cancer sucks.  Radiation sucks.  However, the radiation crew at Backus Hospital in Norwich, they made it not suck.  In fact, the emotion that I am physically having right now is a feeling of love, happiness, and admiration for the folks in the radiation department.

From the start of this part of Amber’s journey (the radiation treatments) this department has welcomed us with open and loving arms, and took us under their wings.  All throughout her 30 treatments, they have treated Amber like a family member, not “just” a patient.  But their kindness did not stop at just Amber.  They were so thoughtful and sweet towards Ryan, Brianna, Marie, and Matt and me.  They certainly went above and beyond.  And for me, personally, since I was the one that mainly brought Amber to her appointments every day since May 17th, the radiation crew made me feel “human” again.  With the way these past 3 months have been, it was nice to have people (who didn’t even know me) take interest in me and my well being, making sure that I was doing okay.  But not just checking in on my sanity — actually taking the time to talk with me and ask how my weekend was or how my day was going or making me laugh.  I honestly did not know going into this that I would be this torn inside with my feelings and emotions on Amber’s final day today.  The kindness and love from a group of individuals that did not even know us at first, but wanted to get to know us, day after day — it blossomed into an awesome friendship.

And even more, the other patients at radiation — what a beautiful group of people.  Sharing in something so sad and somber with Amber but also perhaps (hopefully) having their spirits lifted when they saw her; her positive progression, her smile, and her laugh each week.  I hope seeing Amber in these ways gives a sense of Hope for those that especially need it right now.

So in short (too late) — Radiation itself sucks but the people that we’ve come to know at radiation, they totally rock!  A truly Bittersweet moment for sure.

So God did it again.  HE made something that has been so life-changing and at some points devastating, and He turned it into something wonderful.  He put us in another situation that we were meant to be in . . . brought strangers together to become lifetime friends.

Why God has put us together specifically with these lovely wonderful people from our time during radiation . . . well, I haven’t figured it out, yet.  But it is certain that HIS plan for Amber (and us) continues on.  God’s way is Amber’s way and we just have to be patient to see where it leads us.

 

P.S.  On a side note, un-radiation related, as I was triple checking this post and adding/changing its content, Amber’s loose tooth came out — not by her pulling it by fingers mind you, but by way of her tongue pushing it out!  This is Amber’s 1st tooth!!!!!

This past week has proven to be yet another new “New Normal” for the Smith household.  The girls were officially done for summer two Fridays ago, and normally the schedule we once had diminishes and we have to readjust to a new summer schedule.  So the same is obviously true for this year too, however, add in Amber’s many appointments and her “at home duties” to the mix and it’s just plain chaos.  Thank God, literally, for grandparents because without the help of them, I would be in the loony bin.  Suffice to say, we made it through the week not too bruised or battered!  (it’s funny how life has a way of doing that…)

In between all the chaos of this past week, I have to say that Super Amber Grace, is walking . . . by herself mind you, all over the place, and quite well.  And, when she’s been sitting and is bored with it, she gets up out of her sitting place and walks around, just because.  Walks to any place she can.  And when we ask her where she’s walking to she just says “just around, I gotta get my PT in”!  Well alrighty then — how can we argue with that?  I mean seriously!!!

At the beginning of last week, Amber and I met with an APRN named Victoria from Dr. Gillan’s Oncology group and then Dr. Martin from Neurosurgery for some routine follow ups.  Everything was good.  One thing that was discussed at both appointments (and then later was confirmed) was Amber’s next MRI, or as I like to call it (and I believe it was Dr. Martin way back in the beginning who called it), “The Truth Machine“,  which is scheduled for Wednesday, July 25th, 2018.  That’s when we learn the truth of what’s happening inside Amber’s brain.

And . . . I am scared out of my mind, but in a numb kind of way.  It’s the kind of physical feeling of combining the emotional feeling of actually being scared but mixed with my mind consciously saying “it is what it is”.  Kind of like that giving up feeling.  Because in truth, it is what it is.  Amber’s outcome is either:  status quo, no regrowth or:  bad, there are more tumors lurking.  Of course I’ve been praying like crazy and saying the Rosary every night asking for the impossible — for Amber to be completely healed and cured of cancer . . . but, what if it was possible?  That’s what Hope is, right?

Please, if you can, say an extra prayer for Amber — especially as we near July 25th.  As I’ve said in the past, I truly and wholeheartedly believe in the power of prayer — it’s been made apparent to me, especially over these past 3 months.  And also, please don’t get annoyed with me as we get closer to her MRI date when I keep asking, and asking, and asking,  for you to say an extra prayer for Amber.  My father used to tell me I was really good at nagging him when I was a kid.  My husband loves to tell me that I am the best at nagging him to death to get things done around the house and geez, don’t even get me started on what my kids thing of my nagging!  What can I say — it’s a gift and a curse!

Thank you  🙂

As Amber gets stronger and improves everyday I can’t help but ponder (again) what the future holds for her.

This past month, although going great with Amber’s positive improvements with things like walking on her own and “lefty” (which is her left arm, hand, and fingers) getting stronger, I can’t help but feel sad.

About a month ago we suddenly lost our daycare provider at Saint Joseph School.  A gentle soul of a woman who clearly cared for the children she was watching over.  And then almost a week ago, we lost another wonderful woman whose grandchildren attend Saint Joseph School.  This particular woman was diagnosed with an illness not unlike Amber’s around the same time that we found out about Amber’s.  That was 3 months ago (in a few days — June 21st).  The first woman was sudden, and the second, although not as “sudden”, was also too soon.  I can’t help but think about Amber in all this.  What does this mean for her.  I’m afraid to think of what this means for Amber, given the type of cancer she has where the outlook is particularly grim.  I guess it just puts life once again into perspective.  Cherish it, Enjoy it . . .  while we still can.  Life is precious — which is making itself very clear to me, especially with the passing of these two wonderful women.  I know it sounds so cliche to “live life to the fullest” but do we?  With the mundane nuances of the “same old same old” day to day living, are we really living our life to the fullest?  To actually remember that our life, and the lives of our loved ones around us, are not going to be here on Earth forever.  To think that they actually may be gone tomorrow . . .  that’s a hard concept to digest and that’s a hard concept to actually consciously think about, every . . . single . . . day . . .

Our own mortality.  Wouldn’t it make life so much less complicated if we knew when our time was up?  Well, for someone like Amber, with the type of cancer she has, hers might be predictable . . . but the doctors are working hard to change that, and we pray for Divine Intervention for her to be Blessed Stanley Rother’s Miracle!  I am optimistic for Amber but I am also realistic . . .

If you had a hard day, or a boring day, or even a great day today, give your loved ones an extra squeeze when you are hugging them and an “I love you”, because remember, we never know when that may be our last one to give.