The Five Senses of Christmas

The Five Senses of Christmas

 

It was eight years ago this past week that we took our family to Disney World.  We traveled, laughed, walked, talked, smiled, hugged and held our kids A LOT. We enjoyed our time together as our nineteen month old daughter was battling cancer.  She was really sick. She had just finished a round of chemo that left her little body and mind exhausted, but we knew that this was our time to go. We knew that we had to get away from hospital and home life for a few days to unplug and spend time being a family without that big black cloud over our heads.  We often joked about taking Gracie to a tropical island far, far away to escape reality and her diagnosis. It’s funny how we thought everything would disappear if we did that. I know a lot of us feel like we just need to escape to a place where we can relax and forget about the stresses of life with the ones we love.   When we picture this place or this vacation in our minds, what are we truly picturing? I know that I picture simple things like some place warm with sand between my toes and a good book, but most of all what makes me smile when I think about my escape place is being with friends and/or family who make me laugh and feel loved.  In this place, I don’t need my phone or souvenirs or anything that distracts me from a real moment in time. What I need and want can be fulfilled through my five senses- sight, sound, taste, smell, and touch. I can see the ones I love in a beautiful place. I can hear the laughter and talking. I can taste the salt in the air. I can smell the ocean air. I can touch a hand; I can hold my babies, and I can feel their love as I hug them.  What I’m beginning to realize is, I don’t have to escape and go far away to some beautiful or exotic place to feel fulfilled. A good trip is fun and needed sometimes, but don’t we all deserve to evoke our five senses in order to feel fulfilled on a daily basis?

When we returned from our Disney trip, we got off the plane and went right to the clinic at the hospital, as Gracie needed to be seen a few times a week and vacation disrupted that plan, so her appointment was scheduled for the minute we got off that plane.  When we arrived, we were on our post vacation high, but we knew that important decisions in Gracie’s treatment plan needed to be made. We immediately felt that sense of fear and helplessness. It was eight years ago that we got off that plane from Disney and eight years ago that our doctor sat us down and told us Gracie was going to die.  The treatments were not working and they were making her so sick that the doctors feared the chemo would take her life before the cancer did. I remember sitting there crying, wondering how and why this was happening and staying there for a long period of time hoping that maybe the doctors would come back in and tell us we could try something else.  We knew Gracie’s cancer had a very poor prognosis, but we always had hope. But on this day, our doctors told us the worst news ever: Gracie was going to die. How did we go from one of our escape places full of happiness to this place full of worry and sadness? As we sat in the clinic room waiting for the doctor or anyone to come back in and tell us something different, something more positive, I looked down at Gracie in my arms.  All that girl wanted was to be with us, to be held by us, and to be in a comfortable place with us. She deserved to be home, comfortable and surrounded by love. That’s when we left that room and headed home with our terminally ill daughter. 

We headed home during what was supposed to be the most wonderful time of the year, yet we had to tell our friends and family that our beautiful little girl was going to die. I’m not sure if anyone said a word on the way home.  We knew what had to be done for the remaining time left with Gracie. All Gracie wanted and needed was to see, hear, smell, touch and feel the love from her family. Fortunately, we had an army to help us do this. People cooked, decorated, shopped, and did everything for us so we could focus and be present for Gracie and Luke. We unplugged from technology and held our Gracie, taking in all the sights, sounds, tastes, smells and touches with our family of four while we could.  It was one of the most meaningful and special Christmases we’ve ever had. I didn’t stress over gifts or material things, for there were much bigger stresses. It put into perspective the true meaning of Christmas. Our family, our friends, and our community gave up themselves to bring happiness to our family. There isn’t a gift that is more special than that.

 

Christmas of 2011 will always weigh heavily on my mind.   It is a time I need to think about more frequently to remind myself to slow down, to take a break from technology, and to just be present in my family’s and friends’ lives.   This holiday season and each and every day after, may you all receive the simple gifts of seeing, hearing, tasting, smelling and touching with those you love.

 

Merry Christmas and Happy Holidays.

I am not alone

     

I am not alone

Summer.  The warmest season of the year….long days, warm nights; beautiful sunrises and sunsets; breathtaking thunderstorms; and days that are filled with activities that lead to great memories.   Last year I described this time as relaxed and carefree. This year I can describe it as being crazy busy, trying to fit everything in without feeling overwhelmed and anxious. It was one of those summers where I had to laugh or I’d end up crying—totally different than last year, but still memorable.  What I have realized this summer is you can’t replicate what has happened in the past. You can have all intentions of doing that, but it’s never the same as when that moment actually happened. We get older, our kids get older, and the memories we make, change. It was hard for me this summer when thinking about my Gracie.  I think about her every minute of every day, but when I’m on vacation,I think about her even more. As I was sitting at the beach this summer, I was thinking about my Gracie and panicked as I realized I’m starting to forget things about her. I’m forgetting what it felt like to hold her, I’m forgetting the sound of her voice, her cries, her snuggles, her hugs.  I’m forgetting what that physical touch with her was like. As a mom, that’s hard. As a mom, I’m supposed to know her inside and out. I’m supposed to comfort her when times are tough and celebrate with her during the good times. The hugs, kisses, snuggles, laughter, giggles, and talks have been missing for seven years, and what I remember from the past is becoming more distant from my memory.  Those moments from the past can never be replicated again; they are just memories…memories that don’t bring that physical touch, but instead are a vision of the time we once had… a time I am deeply thankful for.  

Every day, every year, every summer without Gracie has its challenges, and this summer was one that I needed to overcome. But it is not that easy.  This isn’t something that you can connect with a lot of people on. It’s a subject that makes you feel very alone. So to try to overcome this, I decided to focus on remembering our memories by looking at pictures, still thinking about her (just as much as I always do) and looking for signs.  

Last year at camp I received a sign during our last week.  It was a great one. One that I believed was incomparable to any others and one that couldn’t be matched. I won’t bore you with the details, as it’s all in last year’s blog from August, but I will tell you it had to do with sea glass from our time at camp.  So this year as I worried about missing that physical touch, I anxiously awaited a sign. I can compare this to watching and waiting for a pot of water to boil! When you want it to happen, it doesn’t. Don’t get me wrong, there were signs, but they were the type of signs I get everyday.  I saw lots of bunnies and dragonflies, which I feel are signs from my baby girl, but I wanted more! I needed more. Where was my big sign? My sign that was different from the rest? My sign that she’s ok? That we’re ok? I anxiously awaited this sign as the whole month passed by, and I almost accepted that I wasn’t going to get that sign I was hoping for.  

On our last full day at camp, we headed down to the beach.  It was hot and sunny, and the beach was pretty busy. The lake wasn’t completely calm, but it wasn’t stormy, either. It had small waves, and the air was heavy, as if there might be a storm on the way.  As I began to set up, I realized there wasn’t too much room between our large, loud group and a lone woman who was quietly enjoying the beach (and probably the peace and quiet). But there was no where else to go, so I positioned myself in my beach chair next to my sidekicks, and we watched as the kids swam and went on walks to find sea glass. Not too much time passed before the clouds in the distance turned dark and gray,  and we heard the sound of thunder. Everyone came out of the water and waited for a few minutes. Another loud crack of thunder came, but it was still distant. I took out my phone and looked at the radar. It looked like some intense storms were on their way, but we were right on the edge of the storms, so it looked like we were going to miss them. The lifeguards closed the beach and every single beachgoer left, except us and the lady whom we set up right next to.  Being that it was our last beach day, I told everyone that I was not leaving and that the storm was not going to hit us. So, the majority of our group stayed and watched the storms travel across the lake for hours. We had a blast. We got rained on for a few minutes, but it was welcomed, as it was so hot out. Once it started raining, I thought for sure the woman who was basically sitting right in our circle would leave. She did not. Instead, she started talking with us.  She immediately befriended one of my friends, and as they were having a conversation, I heard her say she doesn’t mind the loudness of our group because she has a big family and she’s used to it. Then I heard her say she recently lost her two year old grandson. After that comment, I was half listening because I froze. I thought to myself, I am not alone. This woman talked for quite some time about this tragedy to my friend as I wandered about chasing Ava. When I came back, she came over to me and expressed her condolences about Gracie, and we talked for a few minutes.  She looked at Ava and knew that she was my rainbow baby. How ironic that we set up next to this woman? And that every single person on the beach left in fear of the thunderstorms except our group and this lady? And she felt comfortable enough to talk about her grandson’s tragic death? Maybe it wasn’t ironic, but meant to be. He and Gracie were about the same age when they passed away and the couple who lost him are trying to have another baby. I told her to tell her kids to have faith; we are living proof that faith goes a long way. For when the storm passes, there are always blue skies waiting behind those clouds.  And guess what we saw when those storm clouds passed? The most beautiful sunset I had seen during our entire time at camp.  

We never got those thunderstorms, but they could be heard loud and clear from a distance.  I heard you, Gracie. I received my sign. I was not alone.

 

Night of Grace-2019

Happy summer!  We hope everyone is enjoying their summer!  For Amazing Gracie’s Gift August means planning and getting ready for our Fall events.  So without further a do…. Night of Grace 2019 is ready for you!  Our theme this year is “Together We Will….”  We hope you can join us on Saturday November 9th, 2019 at Francesca’s to celebrate together, dance together, laugh together and Be Amazing Together!

Tickets are ready for purchase today!  Discounted tickets available through August.  In September prices will increase.  A limited amount of reserved tables are also available.  You can purchase on the website www.amazinggraciesgift.org or by mail.

Enjoy the rest of the summer and we hope to see you in November!  Keep Being Amazing <3

 

8th Annual Golf Tournament- Changed for Good.

Welcome to the 8th annual Amazing Gracie’s Golf Scramble!  Thank you for spending the day with us and for raising money for Amazing Gracie’s Gift Foundation. Over the past 8 years we’ve experienced just about every kind of weather you can imagine at our golf tournament. We’ve had sun, clouds, rain, fog, wind, and even snow. It’s also been pretty cold, super hot, and also very pleasant. Today we did not see rain and had a few peaks of sunshine! The sun always makes the day a little brighter, but what really makes this day truly amazing is the smiles on all your faces and the love in your hearts for our foundation.  

Today we had over 150 golfers, over 30 volunteers, over 100 donations from some amazing people and businesses, and sponsorships totaling over $14,000 before the tournament even began!

With the funds raised today and throughout the year we are able to do the following:

  • Provide individual financial assistance and memory making opportunities to families whose children are battling cancer or a life threatening illness.
  • Provide professional photo shoots for local families
  • Host an Easter event at Golisano Children’s hospital
  • Support the Beads of Courage and Flashes of Hope programs at the Melodies Center at Albany Med.  Both of these programs will allow us to touch the lives of more families and help them create memories.
  • Send $5000 to the Journeys Program at the Melodies Center to directly support children and their families
  • Support families and cook dinners at the RMH
  • Send $5000 to the RMH to provide meals and entertainment at the new Krantz Cottage at Lake George.

We could not do all of this without you.  Thank you!

I would like to welcome Debbie Ross from the Ronald McDonald House of Albany.  Debbie is the resident house director at the RMH. Resident house director is her title but she is so much more than that to the families staying at RMH.  She is their cheerleader, a friendly smiling face, a shoulder to cry on, she is who families will share good news and bad news with. Debbie is one of the most compassionate, giving and loving person who I’ve ever met.  When you’re around Debbie, you know that the kids come first and she will do anything and everything to make them feel comfortable and loved during their stay at the RMH. She is not only our contact person at RMH, but our friend and extended family.  Debbie is here today to share some exciting news about the RMH and how we are able to help. Please welcome Debbie.

This past spring we took a trip to NYC to see the broadway show, Wicked.  An amazing show it was and at the end I was in tears as they sang the song, “For Good”.  The words “ Because I knew you I have been changed for Good” touched my heart. I immediately thought of Gracie and knew that because I knew her, I had been changed for good.  Gracie’s big blue eyes and the love she had for us, her family, changed me for good. There is nothing more valuable than time spent with those you love and I thank Gracie everyday for showing us this. The love, compassion and support we received from all of you has also changed me for good.  Families, friends and strangers immediately came together to shower us with love, prayers, compassion and support. Thank you for showing us the good in what was one of the hardest times in our life. Today we are not here for Gracie, but instead we are here in memory of Gracie. She touched all our lives in one way or another and we are paying it forward by being amazing and doing good in memory of her.  What we are here for today is the kids who are battling cancer or a life threatening illness. We are here to help them make memories and to support them, both emotionally and financially. Because we know these children, we have been changed for good. The giving hearts of all the people in this room and all those who couldn’t be here today continue to amaze us by helping us help others. Because I know all of you, I have been changed for good. And more importantly because of all of you, the children we help have been changed for good.  The smiles, laughter and endless thank yous from our families show the goodness we bring to those who need it the most. I hope because you know us, Amazing Gracie’s Gift Foundation, and you knew Gracie, that you have been changed for good, too.

Each year I state our motto and I ask you to be amazing.  So without further ado…

  • Be Amazing like the RMH of Albany. A place that provides comfort, hope, love, and support for so many families. The RMH now has more room for love in their new house and can hold up to 25 families. One of those rooms was built in Gracie’s name. It is beautiful, warm, comforting and totally amazing.
  • Be Amazing like the Melodies Center at Albany Med and like Golisano Children’s Hospital whose efforts to help save and cure children are endless.
    • Be Amazing like Lilliana and Ronnie who have battled cancer and are now in remission.
    • Be Amazing like Jacinto, Giada, Will, Marcus, Azalea, Mackenzie, who are bravely fighting and dealing with complications from the side effects of chemo.
    • Be Amazing like Mya, Ava, Cooper, Sophia who fought bravely and lost their battle with cancer.
    • Be Amazing today and always for all the kids who are suffering and for all the kids who have lost the fight.
    • And lastly, my motto and what keeps me going on a daily basis – Be Amazing like Gracie.

Thank you for the past 8 years. Because we know each other we are changed for the better.  Let’s keep the good going and make it to 10 years!

The Vera Bradley Bag

The Vera Bradley Bag

January, we meet again. January is a time for New Year’s resolutions and  new beginnings, but for us, January is a reminder of seven years ago when it didn’t hold anything new.  Instead, January left us with an end, the end of Gracie’s life. On January 17th, it will be seven years since Gracie died, and it hasn’t gotten any easier.  I miss her. I long to hold her, to see her grow up, to fight with her siblings, to argue with me about stupid stuff, to see her play with her friends, to hug and kiss her just one more time.  That can never happen, and it literally takes my breath away every single time I think about it. With tears in my eyes, I replay the events and emotions of this month, seven years ago. I recall the days before she left us and the moment she left us over and over in my head, hoping it’s a bad dream while knowing it’s not.

When a person’s time has ended with a loved one, holding onto the memories made, in order to keep them alive in your mind and heart, seems like all that one can do.  I’ve talked a lot about all the memory-making vacations we’ve taken, but I had forgotten about the everyday memories and everyday life with Gracie….until I recently went on a cleaning spree.  I believe that my girl knows I struggle with his month and sent me a sign to give me some comfort. While cleaning the closet and taking the many piles of “stuff” off the top shelf of our closet, I found our “take this when Gracie goes somewhere” bag.  Our girl was too special for an ordinary bag, so she was given a “Vera Bradley” bag! When I grabbed this bag from the top shelf of the closet, my eyes started watering and then I started laughing. This bag went everywhere with us (take everywhere with a grain of salt). When your child has cancer, you can’t really go everywhere.  Your outings consist of clinic visits, hospital stays and RMH stays. But at least we were going out, and if we were going out, it was going to be in style! I laughed when I thought about this because we were known as the “Vera Bradley” girls. We’d come into the hospital or clinic with this bag, and I always had my Vera Bradley purse. My mother-in-law often went with us and she had a Vera Bradley purse, and we always traveled with an overnight bag…. you guessed it, a Vera Bradley overnight bag!  So here we were walking into clinics/hospitals looking like an advertisement for Vera Bradley or like we were a stand in NYC selling knock off Vera Bradley bags every time we went out. Staff in the clinics/hospitals almost always noticed and made some type of joke to make us smile and laugh. I miss seeing them. I miss having those people in our life, as they were our “home away from home” family. They were a part of our everyday, normal, routine memories with our Gracie.

When I opened this bag, the everyday memories with my girl came flooding back in.  Among the variety of items in the bag were a small package of Skittles and a lollipop.  These were for Gracie when her appetite and taste buds were gone; a little piece of candy would often make her feel a little better and erase from her mouth that metallic taste that chemo left her with. The bag also contained Wet Ones for those sticky one-year-old hands and to sanitize our own hands after going anywhere.  There was a pen to sign the papers saying I was made aware of what the chemo drugs might do to my child and that I still give consent for her to have them. I also used this pen to write in my journal and to let Gracie scribble on paper. There were cough drops so Geoff and I wouldn’t cough at night in the hospital and wake up Gracie (or other patients).  My wristlet (Vera Bradley again!), to keep my money in to buy food at the hospital cafeteria, was also in the bag. Our Mickey sunglasses were in there, too. We got them on our trip to Disney World, and I would wear them while driving to Albany, and Gracie used to hold them when we got there. There was a brush that was used in the beginning for Gracie’s hair, and when she lost all her hair, I used it to put my hair in the most common hairstyle you’ll see at the hospital, a pony tail. The bag also held hospital lotion to put on Gracie’s thin and fragile legs, arms, and face after a sponge bath and a spray hand sanitizer to keep germs away at all times.  There were also Albany Med. parking passes to use during the twice-a-week and eventually daily visits to the hospital. In the bag, I also found a vomit bag in case Gracie got sick in the car from her treatments and a thermometer to check her temperature a million times a day for a fever. A fever was dangerous and meant a hospital stay. And last but not least, there was one K cup in the bag. Gracie held onto K cups in her little hand almost the entire time she battled cancer. She didn’t do anything with it; she would just hold one in her hand as if she were keeping it safe or maybe it was helping her feel safe. In her other hand would always be her bunny.  I did not find the bunny because it is with her.

As sad as it is to think about these items as a large part of her everyday routine, they have meaning and are special to us.  They are the little things in life that now make me happy to see and think about because they remind me of our life and our time with Gracie.  I didn’t forget them. They were just in the back of my memory probably marked as “everyday, boring, mundane stuff.” But those everyday memories are much more valuable than we think.  They were moments, moments spent with Gracie. I have not bought a new Vera Bradley purse or bag since retiring all of them in January 2012, but I will always have that special bag and the special meaning that it contains. That bag and all its items are right back up on the top shelf of my closet and while I don’t physically carry it with me anymore, I will forever carry with me the priceless memories that it holds. I miss you, Gracie.  I love you, Gracie. Happy 7th Angelversary in heaven my Gracie girl.

“Sometimes you will never know the true value of a moment until it becomes a memory.”

Feeling Rich

The holiday season is upon us, which means my “lists” have begun!   Notice the “s” at the end of list. These lists are not what I want for Christmas, but what I need to accomplish before Christmas gets here.  The grocery list for cookies and special Christmas meals, the party list, the school list, and most importantly the “who we need to buy Christmas presents for” list.  As I finished the “who we need to buy Christmas presents for” list and looked at how long this list was, I felt overwhelmed. I questioned when I was going to get all this done and how was I going to pay for it all. I wasn’t feeling rich at all; in fact, I was feeling defeated. There have been quite a few moments and days lately where defeat has overpowered the richness in my life.

Life has a way of throwing you curveballs just when everything is going well and you think you’ve figured everything out in this life.  I have contemplated sharing this latest news, as I’m honestly embarrassed to admit the reality of my life and worried about what people may think about our family.  But I cannot worry or stress about what people think. This is my life. This is our life. We cannot change it or look back but only move forward. Recently our son Luke was diagnosed with Type 1 diabetes.  This diagnosis came out of nowhere after what we thought was a virus or a stomach bug or maybe even the flu. When they told us he had type 1 diabetes my mind immediately started asking questions. Why? Why did our family get another blow? Why Luke and not me? What did I do to deserve this? Did I do something wrong as a child?  Did I eat something wrong when I was pregnant? Did I yell too much at my kids this year? Am I being punished in this life? Lots of questions and A LOT of mom guilt. First Gracie dies of cancer and then Luke gets diagnosed with a disease that is life threatening if not taken care of daily for the rest of his life. Why? Why? Why?  Once again I am feeling defeated.

The worry of a child with type 1 diabetes is very overwhelming. Is he low?  Is he high? Did I count the carbs correctly? Has it been three hours since his last insulin?  Do we need more supplies? Will his diagnosis be accepted by his friends? Will he be invited to parties or sleepovers with his friends?  Will the parents be supportive? How will he handle school? Will he miss classes to go to the nurse? Will his grades go down? How will he handle his sports schedule?  Puberty is already scary enough; how will diabetes mess with that? Will he ever be able to have a beer (when he’s 21 of course)? OMG, what will he do when he goes to college?  I might have to go with him! The questions and worry and mom guilt never stop.

With lots of time and patience, I am slowly learning a lot about this diagnosis.  Type 1 diabetes will never go away, but it is manageable. Luke will need insulin to stay alive for the rest of his life.  Type 1 diabetes has no known cause and no cure. It is an autoimmune disease in which the body attacks the beta cells in the pancreas.  I did not cause this. So please don’t think that I mis-fed my son or that he didn’t get enough exercise. That only exacerbates my mom guilt for no reason.  Over the course of a month, I have learned that kids with diabetes can do everything that other kids can do; they just need to adapt activities to keep blood sugars from going too high or too low.  Diabetes is just one aspect of a child with type 1. I know I need to take care of his medical needs but always try to make him feel like a kid first and foremost.

Luke is doing AMAZING with all of this. He’s handled it wonderfully, is managing it successfully, gives himself his own shots and does not let diabetes define him.  At this moment, he is in control of diabetes and is not letting diabetes control him. I can only hope and pray that it stays this way. He is not feeling defeated, so neither should I.

I looked back at those Christmas lists and I decided to look at it in a different way.  Instead of feeling defeated, I felt rich. Not material rich, but rich with love, thankfulness ,and happiness. When looking at the list of who to buy for, I didn’t feel defeated anymore, but rich to know so many people who love and care about my family.  Rich to be able to make someone’s day a little brighter this holiday season. Rich to think about putting a smile on a face of someone else who also might be feeling defeated this Christmas. When looking at Luke’s diagnosis instead of feeling defeated, I’m also trying to look at it in a different way.  I’m feeling rich with thankfulness that we got Luke to the hospital before it was too late, for the amazing doctors and team at Joslin who continue to educate him and our family on how to manage Type 1, and for his school and friends who support him. Have you ever heard the quote, “ When life throws you a curveball, hit it out of the park!” ? That’s exactly what Luke is doing. I am beyond rich for having a kid who gets thrown these curveballs but gets up, deals with it, deals with it amazingly and keeps living this crazy life.  (But for God’s sake, can we please go with scrapes, cuts, bruises or even stitches next time and stay away from the big stuff like broken bones and life- threatening diseases?!)

It truly is all in how you look at things.  I do realize that I am not alone. There are a lot of people out there who are also feeling defeated this holiday season… Holiday stress, anxiety, depression, financial struggles, loneliness, missing a loved one, illness, painful and life changing diagnoses … the list goes on and on.  I hope and pray that anyone feeling these defeats can look at the situation again and find some type of richness to it. This Christmas season I hope that we can all try to spread a little Christmas cheer and kindness to those who are hurting and feel defeat. It is very hard to know who those people are as many don’t show their pain or defeat.  So simply being kind to everyone and anyone you meet can change someone’s day. I hurt everyday knowing that Gracie is gone, but I feel rich for knowing her and loving her for the time she was here. I also feel very rich to have friends and family who help me find the good and fill my heart with love and thankfulness instead of defeat. But not everyone has the same support I do. A simple hello, how are you, holding the door open for someone, baking someone cookies, letting someone ahead of you in line, a Christmas card, a phone call, or a simple smile are just enough to turn one’s day around.  Simple acts of kindness can make you and the person receiving them feel rich. Someone gave me this quote a while ago and when things get tough I remind myself, “You don’t have to do anything, you GET to do everything.” My Christmas wish is that when you are feeling defeated, you remember this and can find your way to making yourself and someone else feel RICH with love again. Merry Christmas.

“Today be thankful and think of how rich you really are.Your family and friends are priceless, your time is gold, and your health is wealth”.

2018 Night of Grace Video

Invisible Strings

“Invisible Strings”

Summer. The warmest season of the year….long days, warm nights, beautiful sunrises and sunsets, and days filled with carefree, fun activities that lead to great memories. We took full advantage of summer this year. When I look back at it, I’m pretty impressed with how busy yet carefree we were— busy in that we were on the go quite a bit and carefree in that wherever we went, time slowed down, we did what we wanted, and we enjoyed just being with each other. I noticed that I had many moments this summer where I tried to push a pause button…moments where I tried to soak in everything and thought about how grateful I was for those moments, for the people I was with, and for what I was doing. I had so many moments like this that I began to wonder… Am I getting sappy with age? Or maybe wiser with age? Or maybe I’m to the point of acceptance in my grieving process? I will never feel ok about the loss of Gracie, but I am accepting it, living with it, and trying to make the best of every moment I have with family and friends because I know things can change in the blink of an eye. Because of this, I’ve really tried this summer to live in the moment and to live for moments I cannot put into words.

We had some awesome trips and adventures this summer, but nothing topped the little moments that made me smile and let me know my middle child was with us. Some might say these are daily coincidences, but I know in my heart that it’s my Gracie Girl letting me know she’s with me. Our family heads to camp at Brennan Beach each year for the month of July. Brennan Beach is located on the great Lake Ontario. If you’ve never been, you should go. Lake Ontario has the most beautiful sunsets I’ve ever seen. Our month consists of relaxing on the beach, swimming, campfires, good food, cornhole, other games, laughter and sea glass hunting. Sea glass hunting is serious business with our crew. It’s a job that the kids and some of the adults take very seriously. Several times a day, a group would split up and walk the beach to look for these different colored, smooth, stone-like pieces of glass hidden among the rocks on the beach. It was a competition to see who could find the biggest, prettiest, most unique piece of glass. Competition is pretty serious; it is so serious that one of the kids is nicknamed “Hawkeye,” and you can’t even sea glass hunt near her because she will find it and take it before you even see it! Hawkeye never disappoints and normally has 3-4 pieces within her first 5 minutes on the beach. Even our 2 year old Ava has been watching this competition and gets right down in the sand to pick up rocks that she thinks are sea glass. She’ll get it eventually, as I have Hawkeye training her for next year. I must admit, though, I am not the best at finding sea glass. I like the feeling of finding it, but I don’t really go on the hunt. I like to sit with my beach buddy in my beach chair, look down and just have the sea glass appear. FYI: this does not happen too often! On our last day of camp, we took a morning walk on a different part of the beach with some of the kids, and I thought to myself, “This is my chance; I’m actually going to look and find some sea glass on my own!” Thirty minutes in and I had found nothing. I was pretty bummed and realized the patience it takes to find these little treasures. At this time Ava was getting antsy, so we decided to get going. As I was walking back empty handed to the stairs that lead off the beach, I was talking to Gracie. I asked her to help me find just one piece of sea glass. I said, “Gracie, if you’re here with me, please help me find a piece of sea glass.” I walked up two steps, looked down in the sand and saw a large piece of dark blue sea glass, a rare find, just sitting there. My Gracie Girl was with me. It was moments like this all summer long that put a smile on my face and a feeling of peace in my heart.

So many moments like this happened all summer. At Sesame Place, we were walking along in the park and one of my Gracie songs came on…one that I hadn’t heard in years. She was with us. When coming back from the lake and hanging our wet towels and bathing suits on the clothesline there was always, day in and day out, a dragonfly sitting on it. She was with us. We recently had something living under our shed. We caught it in a live trap and discovered it was a baby bunny, which we let go! A family of bunnies had moved in under the shed. Bunny was Gracie’s favorite stuffed animal. She was with us. A young girl we have all come to know and love was diagnosed with cancer 10 years ago. Her treatment options were exhausted and we were all praying for a miracle. Jackie and I went to visit and to help the family create an everlasting memory. We are so thankful we went in that moment because the next day she passed away. Gracie was with us. A last minute stop at the Candy Cottage in Old Forge resulted in finding a stuffed animal named “Gracie” tucked under a shelf and barely within view. The “Gracie” animal had a saying on it that said, “Love goes on forever.” She was with us. We were on a last minute trip to the ocean in Rhode Island, and after a walk on the beach under the full moon and among an outbreak of teeny tiny jelly fish, that thankfully don’t sting, we were greeted by a baby bunny that stuck around with us for a while. She was with us. A foundation event at the Ronald McDonald House of Albany and when we walk in we are greeted by a big picture of our blue eyed Gracie. She was with us. And while cleaning bookshelves this summer, we found a special book that both of my children own. These books were given to us when Gracie passed away. We hadn’t pulled out these books in a very long time and we all stopped to take a minute to look at and read them. We have two copies, one from the staff at Melodies Center where Gracie was treated and the other from a teacher at CVA who has also had to deal with a devastating loss. We read the special notes inside these books from them and talked about the invisible string between Gracie and all of us. “ People who love each other are always connected by a very special string made of love. Even though you can’t see it with your eyes, you can feel it deep in your heart and know that you are always connected to those you love.” The invisible string between Gracie and us is always there, but I believe it was tugged on a little bit more this summer.

Golf Tourney 2018

If you’ve golfed with us in the past, you may have realized that today we are missing a very loyal and foundation member who usually golfs and who played a very big role in all the little details that make this event successful. Last May the world lost a great man, Ken Lawton. He was a founding member of our foundation and Gracie’s papa. For those of you that don’t know, Gracie died in her Papa’s arms. I’m hoping she’s sitting in his lap, in Heaven, as we speak and they’re smiling down on all of the love that’s here today. So please raise your glasses in honor of one of our heroes…. My dad, Ken Lawton.

Welcome to the 7th annual Amazing Gracie’s Golf Scramble!  Thank you for spending the day with us and for raising money for Amazing Gracie’s Gift Foundation.

I can’t believe what you and all of our supporters have helped this foundation accomplish in the past 7 years, it’s truly remarkable:

  • First let me start with today. I absolutely loved seeing all your smiles, hearing your laughter and watching the great interactions from golfers, volunteers and all the people involved in making today successful. I’m not sure if you realize how amazing today has been: Today we had over 160 golfers, over 30 volunteers, over 100 donations from some amazing people and businesses, and sponsorships totaling over $13,000 before the tournament even began!
  • Because of our increase in sponsorships, donations and grants over the past 7 years we are able to expand our services and events from Albany to Syracuse.  Which means we are able to directly impact and help many more families who are struggling emotionally and financially with their child’s diagnosis. To date we have helped over 500 families through our basket and backpack events, gift giving and volunteer hours at the hospitals and RMH and by individual financial assistance or memory making vacations.  We are also happy to announce that we will be sponsoring 2 new programs at the Melodies Center at Albany Med, Beads of Courage and Flashes of Hope. Beads of Courage is a program in which children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path. Flashes of hope’s purpose is multi-faceted in that it not only gives families the opportunity to receive a professional photo session, but it also provides patients with the opportunity to document their treatment journey and capture in lasting images, their tremendous courage and strength. Both of these programs will allow us to touch the lives of more families and help them create memories.

Today we are not here for Gracie, but instead we are here in memory of Gracie.  She touched all our lives in one way or another and we are paying it forward by being amazing in memory of her.  What we are here for today is the kids who are battling cancer or a life threatening illness. We are here to help them make memories and to support them, both emotionally and financially.  The giving hearts of all the people in this pavilion/room and all those who couldn’t be here today continue to amaze us by helping us achieve this goal.

I’d like to share a story with you of a family we’ve helped this past year.  Mya Corigliano is known for her mischievous smile, beautiful blue eyes and messy hair. She is a true superhero, who has courageously battled cancer most of her life. Mya’s family could not be here today because Mya’s older sister has the prom this evening but Mya’s mom Brandi, wrote about their journey with Mya for her friend and fellow cancer fighting mom to share today. Jaimie’s daughter Liliana and Mya battled cancer together at Golisano children’s hospital. Liliana is doing well and is in remission! Jaimie has graciously offered to share Mya’s story with all of you today:

Mother’s Day 2016 was a day my husband Steve and I will never forget, the day I delivered Mya, our fifth and final daughter. Our family was complete, Steve and I could not have been happier. Mya’s first three months went by fast but smooth. After a week of what we thought was the stomach bug, two trips to the Emergency room and one to her doctor, we were devastated to find out that Mya had cancer. We were admitted to Upstate Golisano Children’s Hospital for further testing. A few days later it was discovered that Mya had AML (acute myeloid leukemia), and it was a subtype with a very poor prognosis and she would need a bone marrow transplant. Mya and I spent most of the next four months in Golisano for three rounds of induction chemotherapy. While Steve had to stay home because of work and to take care of Mya’s older sisters. We were fortunate that one of her sisters was a perfect match for the transplant.

December 6th, 2016 we made the trip to Philadelphia. December 16th was the big day, transplant day. The day where one of my daughters saved my other daughters life. We spent 81 days in Philadelphia, which brought our total to almost 7 months of Mya being away from her daddy and sisters. I don’t know if there was anything more exciting than the drive home from Philadelphia, our family was finally going to be together under one roof.

Unfortunately, less than 24 hours after we got home, her oncologist called to tell us that the bone marrow biopsy that they had done before we left showed signs of cancer, she had already relapsed. We were told to stop all of her anti-rejection drugs, and her only chance of survival was for her sister’s cells to take over and kill the cancer. It took almost two months, but her sister’s cells did in fact win, and she was back in remission. Our family was together, Mya was flourishing, crawling and starting to walk, eating and drinking and was finally a normal baby. Until June 26th, the dreaded day we found out she relapsed, and not a mild relapse this time, her body had been completely taken back over by the leukemia. Our options were limited, her body wasn’t ready and couldn’t survive aggressive chemo, Mya was terminal. Our options were palliative chemo to keep her comfortable and buy us as much time as possible, or make her comfortable for her remaining few days left on earth. Two days later we were readmitted to Upstate Golisano to have a port placed and to start palliative chemo. We were all devastated, Steve and I decided to make a bucket list with our girls, something they all wanted to do with Mya. We had no idea how we were going to afford it, as it had been almost a year since I was able to work, and though Steve was able to keep us afloat for the last year, we didn’t have anything left over for vacation. Mya was too young for Make-a-Wish. That is where Amazing Gracie’s Gift saved the day. They reached out to us and said that they wanted to make our dreams come true. That every family deserved the best memories. They told us to plan our dream vacation and they would make it happen. They did not disappoint. Our family was able to go to Sesame Place, the Philadelphia zoo, the Adventure Aquarium and Crayola Experience. Our girls had a long weekend of stress free, cancer free, hospital free fun with Mya. We got to see Mya on a tube in the lazy river, we ate dinner and had a meet and greet with all the Sesame characters, we got to hear her bark at every animal at the zoo and aquarium, we got to have our own coloring book pages made with Mya’s picture. We had a perfect vacation. Because of Amazing Gracie’s Gift, Steve and I were able to spoil our girls, thank them for helping us survive the last year, and we got to make memories that will last a lifetime. Thank you again to everyone involved with Amazing Gracie’s Gift, I hope you all know what you mean to families like us!

Unfortunately, Mya did not make it.  She passed away December 19, 2017 at 19 months old.  Because of all of you Amazing Gracie’s Gift has been able to help support Mya’s family!

We will do whatever it takes to help families like the Corigliano’s make memories to put smiles on their faces and memories filled with love in their hearts.

Each year I state our motto and I ask you to be amazing.  So without further ado…

Be Amazing like the RMH of Albany. A place that provides comfort, hope, love, and support for so many families. The RMH now has more room for love in their new house and can hold up to 25 families. One of those rooms was built in Gracie’s name. It is beautiful, warm, comforting and totally amazing.

Be Amazing like the Melodies Center at Albany Med and like Golisano Children’s Hospital whose efforts to help save and cure children are endlesss.

Be Amazing like Lilliana who is 3 years old and is in remission after bravely fighting leukemia.

Be Amazing like Jacinto who is 1 year old and has been fighting a rare brain cancer.

Be Amazing like 2 year old Giada who has bravely been fighting cancer.

Be Amazing like Will who has been bravely fought cancer and has had to have a lung transplant due to the side effects of treatment.

Be Amazing like 18 year old Marcus who is fighting a type of lymphoma.

Be amazing like 3 year old Azalea who has been diagnosed with Stage 4 High Risk Amplified Neuroblastoma

Be Amazing like 4 year old Cooper who passed away last week from leukemia.

Be Amazing like Ava who at 3 years old passed away from neuroblastoma this past September.

Be Amazing like Mya.

Be Amazing today and always for all the kids who are suffering and for all the kids who have lost the fight.

And lastly, my motto and what keeps me going on a daily basis – Be Amazing like Gracie.

Thank you for the past seven years. Let’s keep it going and make it to 10 years!

 

 

Tutu’s and Birthdays

 

 

Tutu’s and Birthdays

 

8.  My middle child has turned eight years old. Beautiful, blue-eyed Gracie came into this world on April 14, 2010 and forever filled our hearts with love and joy.  How is my first baby girl 8 years old?  You know that feeling you get on your kids birthdays when you realize they are another year older and for a moment you tear up (happy tears) thinking how fast time has gone by and how proud you are of the person they have become? Well I have that feeling except it is coupled with an unimaginable pain.  I start off with those happy tears and they suddenly turn to fearful, worrisome, sad tears.  Why?  The answer is plain and simple.  I miss my girl.  I wonder where she is. I wonder if they celebrate birthdays in heaven.  I wonder what she would look like and what she would want for her 8th birthday.  I thought that as the years would pass and each birthday came it would get a little easier, but it doesn’t.  It stings just a little bit more each passing year as I face the hard reality that I know nothing about my 8 year old daughter.  I only know her as an almost 2 year old.  I know there is absolutely nothing I can do about this (a tough pill for a parent to swallow), except imagine.  So imagine is what I do.

I am lucky enough to work in an environment where I’m surrounded by kids’ Gracie’s age all day long!  Every once in a while I realize this and I sit back for a minute and watch and listen to what they are “into” and think about what Gracie would be doing if she were here with us.  Gracie would be in second grade, she would be reading chapter books, writing notes to her friends, finding a small space to buddy read with her friends.  She would most likely want to wear Justice clothes, play with jewelry, fingerlings, mermaids, legos, or LOL surprise dolls. She might be playing soccer or softball, or maybe take a gymnastics or dance class. The list is endless!  I know she wouldn’t be doing all those things, but all I have left is to imagine what she would be doing as she turns 8 years old.  I only wish she was here to show me exactly what she was interested in, what makes her happy, what makes her sad and what makes her Gracie.

As I said before I know there is nothing I can do about how much I miss Gracie and how much I want her back. But I can do something in her honor and memory.  So that is exactly what I did!  Gracie has a box of tutus and bows that has been up on a shelf in a closet since she passed away.  I have looked at that box many times and thought about giving it to a local photographer for props or sending it to Goodwill, but I never did.  It never felt right.  Maybe it was Gracie telling me to hold on to it for this very moment.  I decided this past week to take that box down and have a tutu birthday celebration in Gracie’s memory because we now have another little girl that I’m sure would have loved to get into her sisters belongings if she were still here.  So we took that box down, remembered Gracie in those items and let Ava play with her sister’s hand me downs.  Big brother Luke made fun of the girly items and entertained us all by being silly with them.  But he also really looked at some of the items and remembered pictures with his sister at Christmas in the red tutu.   Ava is now Gracie’s age (before she passed) so she was thrilled to get into the box of dress up!  Ava is also about to surpass Gracie’s time here on earth, but that’s a whole other emotion to tackle on another day. This was good for all of us and may be our new tradition on Gracie’s birthday as we try to celebrate the day she was born, remember her, explain to her sister who she was and as a family imagine what she would look like and who and what she would be.

 

We also carried on our tradition of cooking dinner at the house that love built, The Ronald McDonald House of Albany.  The RMH was such a big part of our lives as Gracie fought cancer.  They gave us shelter, food, support and love.  Since we can’t give that to Gracie, it’s only right that on her birthday we share these things with others who are in the same situation we once were. As always the RMH puts a smile on my face and more love in my heart.

 

Gracie,

Happy Birthday in Heaven. Together in the same old way would be my dearest wish today. Happy 8th birthday, my Gracie Girl. I love you to the moon and back.

Love always,

Mom

P.S. Keep sending those bunnies <3