It’s hard to believe that a month ago on May 10th, we came home from the hospital! Here it is June 10th (already) and it’s getting to the point where our 50 long days of being in the hospital are beginning to take on that foggy distant memory type of feeling, fading a little bit more with each new day.

Yesterday evening we took the family to Holy Trinity Church in Hartford for Mass. Holy Trinity is where Matt and I went weekly while Amber was in the hospital — a very much needed healing spot for the two of us to go and take a break, even if only for an hour, to be able to reflect, breathe, and refresh our souls during such a turbulent time in our lives. Holy Trinity is Father Charlie‘s church, and while Amber has met Father Charlie in the hospital, she has not seen his church, and has been asking weekly to go and visit. Father Charlie has not seen Amber out of her hospital bed, hasn’t had the opportunity to see her talking or walking, and so we have been anticipating this visit for quite some time. We were very excited to not only see Father Charlie but the parishioners as well because we knew that they have all been praying for Amber and our family.

Right before Mass, Father Charlie comes right over to see us, to see Amber, with a big hug for each of us. He cannot take his eyes off Amber and keeps remarking about her being a miracle. And then, during his sermon; talking about Veronica and Simon’s aid to Jesus as he carried the Cross, he calls across the church “Matt, Matt, would you be willing to tell us Amber’s story, at the end of Mass?”. It occurred to us that this Church, this new part of our community, has helped us carry our Cross, and has helped Amber carry hers. Of course we would share the whole story with them. And so, after Communion and before the Recessional Hymn, Father invited our whole family up to the front, and Matt had the opportunity to address the Church. He talked about a few of our personal experiences, as well as emphasizing how hard it has been to accept that, as “The Dad”, he can’t just fix this by just working harder or longer, and therefore has to put his faith in those that can fix this; in Amber’s case, it’s putting trust in the doctors, nurses, and the people around us, and having faith that God brought us to them for a reason. Matt also made a point that you just don’t know if you can lift 300 pounds until you try, and in the same way, we didn’t know the strength of our faith until this test.

After applause and some tears, we headed back down to the pews where we finished Mass. Before leaving, we had many of the parishioners come up to us with kinds words and hugs. Holy Trinity has become a part of our community, our family in support of Amber — Our Church away from Church.

And after that, we said our farewell to Father Charlie and headed out for dinner at a spot we would often hit after Church, J’s Restaurant — another thing we HAD to do now that we had Amber with us! A celebration for sure!

It is so comforting to know that we have people cheering, praying, and rallying for Amber and our family. Amber has her army behind her helping her fight this battle, and it’s her battle that will be won, on her terms, in her way.

Yesterday Amber had her first official Physical Therapy appointment since being in the hospital. Our new physical therapist’s name is Elyce. As soon as we walked into her therapy room, Amber got excited because there, hanging in the middle of the room, was a swing! So while I caught Elyce up on Amber’s sudden life changing situation, Amber got to swing. Afterwards, Elyce had Amber on the floor rolling to get from point A to point B, which she did but it only lasted the one time because Amber’s G-Tube button was sore. Next Elyce had Amber pulling herself up to tall kneeling and then walking on her knees. Amber fell a couple times (on a mat) but got right back up and tried again. We ended up going over our session time with Elyce which I felt bad about but also, on the other hand, selfishly, I was glad it did because it was satisfying seeing Amber working so hard with a professional (in other words, not me trying to figure out what to do!). And as an added bonus, at the end of the session, Elyce allowed us to borrow a square roller scooter to take home and practice for the week (which all of us have been thoroughly enjoying!).

Just as soon as we got home and I dropped Amber with her grandparents, I ran down to the school to help with decorating for the eighth grader’s class night. Then I ran back home to grab Amber for radiation. After radiation it was back home where both of the littlest ones went down for naps and I had just enough time do a couple things before getting Marie off the bus. Shortly after that I ran to pick Brianna up from choir, helped her with her homework, got the littlest ones up from naps and made sure Marie was ready for Class Night, where she and her classmates were going to host the eighth graders. My plan was to essentially just drop off Marie, only stopping briefly to say “Hi” and then get the rest of the kids home for dinner than bed. However, I was informed that I may want to hang around for the beginning part of the ceremony — which I am so glad we did! Little did I know that after prayers and introductions, the eighth grade class got up and announced that this years year book was dedicated to Amber! What a thoughtful and sweet gesture by the eighth grade class! Our school, like Amber, may be small but man oh man, in the same vein, like Amber, boy is it MIGHTY! A BIG Thank you to the eighth grade graduation class for the honor of dedicating your 2018 year book to Amber — that touched us immensely, and personally made my very long crazy day, much more special and worthwhile!

Tomorrow is a big day, one that Amber’s been looking forward to for quite a while — she’s having her “SS’s” removed; her “Stinkin’ Stitches”. She will also have her G-Tube replaced. And, we’ll be meeting with Dr.Martin (NeuroSurg), Dr. Gillan (Oncology) and Dakota (Nutritionist). Big day indeed, especially with our day starting with an early trip to radiation.  And after tomorrow’s radiation visit, there will be “only” 18 more to go.

This past Friday we met with Michelle, Maura, and student McKenzie for OT.  Right off the bat, Michelle and Maura immediately noticed how much looser Amber’s left arm and hand were. They also couldn’t believe how Amber’s hand and fingers were loose and not in a tight fist.  So any talk of having her wear a splint at night was now thrown out the window!  The ladies were amazed at Amber’s progress, but I wasn’t.  In my heart as they were assessing Amber and commenting on her positive progress, I just wasn’t “shocked”. Yes of course it’s because Matt and I are helping Amber with some exercises, and yes it’s Amber herself working hard, but it’s more than that. It’s bigger than that. It’s all the healing prayers and healing thoughts for her.

When we got done with radiation on Friday and were walking back into the waiting area, a stranger started chatting with Amber and I.  This simple pleasantry turned into something special and very generous for Amber.  What this kind stranger did was something that touched my heart so deeply that I nearly lost it with a flood of tears.

What posses a complete stranger to do something spontaneous from the heart that is so sincere, guileless and unselfish?  A bond.  It was an instant unlikely bond between him and Amber; an older man that has lived almost all of his life and an innocent little girl that is just starting hers, yet both possibly doomed by the same uncompromising disease. A special bond that only a certain few share.  Amber didn’t see it but I did; a brief moment in time where both beautiful and sad collided.

To that kind stranger that is now a forever friend, thank you. Thank you for changing my life in more ways than you know.

I guess it’s safe to say that our family is in our “New Normal”.  Amber is thriving and healing everyday.  She is as determined as ever to get back to her normal, although it may be a slightly different version in some regards, for now.  So rather than bore you with our “new normal” tidbits of our family life, every day, we would rather write when something major has/is/will be happening.  Be sure though, Matt and I are not ending this blog — we’ll just be posting less often than the daily routine we’ve been maintaining.

If you want to continue following us, you may want to check out the “Follow” button (you should see it in the bottom right corner of this page) where you can enter your email address to automatically get an email when we post, instead of having to check in everyday.

We thank everyone who has taken the time to follow Amber during her journey — during the ups, the downs, and the in between.  God has sent Amber on a journey and she is on the right path to finding her way, whatever way that may be.  Matt, Marie, Brianna, Ryan, and I are going to make sure that we continue to walk her path, her way, with her as best as we can.  Family and friends, that’s what’s gotten us through this — truly our saving grace in so many ways.  The support has been tremendous and greatly moving.  Thank You.  And so we ask if you could please continue to keep Amber in your daily thoughts and prayers.  Amber’s journey is far from over but the fact that we don’t really have much to write about daily anymore, I think that speaks for itself and how far she’s come!

So my friends, until next time — or at least, until the next time we have something interesting to say!

Today was busy, I’ll admit it.  But lately there’s been some . . . well, let’s just say “hmm” or “ah ha” moments in between all the chaos — which definitely puts life into perspective.

Today was field day for the girls.  Hustle and bustle to get them out the door with both Amber and Ryan close behind.  After dropping Ryan at my parent’s house and the girls off at field day it was time to go to OT.  OT was great with Michelle, Maura, and McKenzie, a student from Quinnipiac.  Michelle noticed that Amber’s left hand and wrist have loosened up since the last week which is great.  Michelle and Maura showed me some  more exercises to do with Amber to keep up with the stretching of her arm, elbow and shoulder, along with making sure that Amber gets her core muscles tight as well as her back straighter.

After OT was done Amber really wanted to go to field day to watch.  So we hurry back towards home to try to make it in time, which was really close considering field day ended at 12:30 PM.  We made it just in time to spend about 40 minutes having lunch with her class.  Amber was in her glory!!

Then it was time for me to whisk the girls away from field day and drop them off to their grandparents’ house where Ryan was so that I could bring Amber to radiation.  Radiations have been a little extra special because yesterday Amber’s Memere got to come with us and now today, her Pepere came with us.  After radiation I had to run to Stop & Shop (thank you Pep for staying with Amber) to pick up some groceries as well as bouquets for the big dance recital that’s happening on Sunday.

After picking the rest of the kiddos up from my parent’s, and putting half of them down for naps, it was time to unload stuff from field day, groceries, and flowers.  Later, while I was making cupcakes for this upcoming weekend, my mind kept pondering over something Amber said earlier in the day.  Amber’s been coming up with “wishes” for the Make A Wish Foundation, where she has a special Wish Box to put them in.  She says to me “Hey Mama, I have another wish for the wish box.” “Oh great Amber, what is it?”  and she says “I wish for Cousin Jenn not to have Cystic Fibrosis anymore.”  I stop what I’m doing and look at Amber.  I’m dumbfounded.  How can this six and a half year old have this level of maturity and selflessness to ask for, to even think of something like this?  Her wish.  My heart swells.  My heart breaks.  So special and so awe-inspiring.  Makes me wonder how I can be less selfish, and further, on a grander scale, how the world can be less selfish; to think of others instead of just ourselves.  There’s a lot to take from this very simple and very sweet request of a child’s personal wish.  Perhaps we all could learn a thing or two from Amber.

Amber had a good day.  Watching some TV in the morning, then some PT, OT, and LT.  What’s LT?  Learning Therapy — coined by Amber!  🙂  After all that, Amber, Ryan and I got to go outside for a nice dose of Vitamin D while blowing some bubbles.

At radiation therapy, there was a therapy dog named Mugsly.  He was a cute white pup with 3 legs and quite handsomely adorned in a bow tie!  Amber and Ryan got the biggest kick out of him!  Not only did Amber get to sit and pet him before radiation but luck had it that he was still there afterwards as well!

It’s refreshing to know what a little bit of Vitamin D and some puppy love can do for the soul!

Amber had a nice visit with Dr. Martin, Allison, and Dr. Paul today.  Amber’s swelling on the right side of her face has gone down, so that’s really good.  Dr. Martin took out 3 stitches today too, which Amber greatly appreciated as those 3 have been hurting her, especially when the tight radiation mask goes on.

Amber didn’t do much walking around in the beginning part of the day because we were in the car for a while going to and from Hartford and then as soon as we got home she was sitting again for a quick lunch before radiation.  She ended up complaining to me that her buns were hurting.  When we got to radiation she opted for walking (with me spotting) instead of the wheelchair!  First stop before radiation though, the water fountain because she was a thirsty girl.  On the way to the fountain, a nice lady looked at Amber then to me and said “I will pray to God for your daughter.”  So meaningful . . .  Then Amber continued on to the radiation suite.  She did fantastic and I think she even impressed the radiation crew!

Originally today was supposed to be our first PT visit in Waterford but because of scheduling conflicts, it had to get pushed off to June 6th.  I’m a bit bummed that it is 2 weeks away because it makes me nervous for whether that will regress Amber’s progress.  Matt and I try to do as much as we can but on days like today where 2 appointments essentially took up the whole day, followed by a brief nap and then dinner, it’s hard to fit much else in.  I feel very guilty that I can’t do more with her, especially OT wise;  her left arm, hand, and fingers.  Michelle our new OT suggested some exercises with her but again, it’s hard juggling everyone’s busy lives and fitting “quick” exercises in.  However, with all this that I’m venting about, I will say that at the dinner table, Amber was able to relax her fingers and then make a fist, relax again then fist!  Relaxing her fingers has been a real struggle for her, so seeing this made us all rejoice.  Furthermore, later on, Matt called me into the family room showing me Amber shaking the maraca with a slight wrist movement!!!

Sometimes our lives are touched by strangers, who then become so much more.

Today was one if those days. Yesterday we had a comment on this blog from Dr. Adams, Amber’s doctor at the Emergency Department at Backus, letting us know she would be working today if we were able to stop by and say “Hi” sometime when we were in the area. So Amber and I stopped by before her radiation. The overwhelming response from Dr. Adams and team was so beautiful and so touching. They were so happy to see Amber and to see how far she’s come since that first dreadful day back on Thursday, March 22nd. As I was watching the girls interact with Amber, I couldn’t help but feel such love and devotion to them, to these people who were “strangers” before all of this. I say the word strangers very loosely though, because honestly, since March 22nd, 62 days ago, I believe they instantly became a part of our family. Because we owe them so much — they aided in saving Amber’s life. Plain and simple. And because of that, they have blessed our lives immensely.

After that wonderful reunion, Amber and I headed to her radiation appointment. While we were in the waiting room, a lady that I briefly met yesterday came over and sat down next to me. After exchanging pleasantries (I honestly didn’t know if she actually remembered me from yesterday or not) she says to Amber, while looking in her purse for something, “There’s been someone crying in my purse that just needs to come out. I think she needs a new home.” So with that, the lady pulls out the cutest little gray Elephant with a TY heart tag that has the name “Ella” on it. The softest sweetest elephant. And an elephant to boot, how appropriate — as if this lovely lady knew our story of The Elephant! After chatting a bit, I found out that today was this lady’s last radiation treatment. How did she know that she would run into Amber? The timing was perfect and again, so very touching. After we chatted some more it was time for Amber to go into radiation. After Amber and I said our thank yous and I wished her good luck, she said that she will be thinking and praying for Amber.

These people, who were strangers to us before all of this, have forever touched our lives, and perhaps, Amber has touched theirs as well . . .

What a beautiful spring day today.  The sun is shining, the birds are chirping, the smell of fresh cut grass and flowering bushes are in the air.  It is an almost-perfect day.  Almost.  In another realm this would be perfect because Amber would be a healthy six and a half year old with no cares in the world during this picturesque spring day.  But it’s different now.  Our lives are forever different.  It’s going to take a lot to hopefully, eventually, get back to a somewhat perfect time in our lives.  Where maybe, hopefully, I can really take in this beautiful flawless day with a relief that Amber’s battle is won, instead of what’s looming in the distance.  It hasn’t been simple thus far nor will it be going forward.  I know that, Matt knows that, and you know that.  I also know sometimes Amber feels that way too.  Like today —

Tonight at dinner Amber started to cry.  “I don’t like my life.  I wish I could just be back to normal again.  I wish I could just do things on my own.  I wish I could walk.  I wish I could run.  I wish I could use the potty by myself . . .”

Tough words coming from a six and a half year old.  True words coming from a six and a half year old.  I suppose even Super Amber Grace can feel down sometimes too.  All we can do is reassure her that she will get there and that she’s come so far already.  But that’s hard for a little one to comprehend.  She doesn’t see the progress as it’s happening, she just wants the end result — which I can’t blame her.  I am still in awe at her perseverance.  I personally would have checked out (mentally) months ago.  Sometimes, even for myself, it feels good to let it all out, and I believe that is what Amber had to do tonight.  So with some positive encouragement, a hug, a kiss, and an ice cream sandwich, she was already moving on . . .

Saturdays are the best day of the week.  They are usually low-key and laid-back.  In between some leisure time, Amber practiced stairs, getting down on her hands and knees, left arm and hand movements, as well as my favorite of the day, taking a few independent steps back and forth between Matt and I!

With all that hard work and of course with the glorious Spring Concert last night that her sisters sang in — that calls for a celebration and a treat — Sundae time!  Matt and I took the kiddos out to Friendly’s and got our fill of ice cream!

Amber’s Sundae:  Mint Chocolate Chip with LOTS of Cherries

My Sundae:  Reese’s Pieces with Forbidden Chocolate, Hunka PB Fudge, and Oreo.  Instead of Marshmallow, Extra Peanut Butter!  HEY — Don’t judge…A Mama Can Celebrate Too!  🙂