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”.

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

Once Upon A Time….

Once upon a time I had a Gracie. She was beautiful. She had big blue eyes, dark brown hair, and a smile that could melt your heart. She was a great baby that slept through the night. She loved to cuddle and rock, blow kisses, and loved dancing to music. She giggled at her brother and loved to follow him around copying everything he did. She crawled at 7 months old and was walking before her first birthday. Her first word was mama. She loved her bottle and her binkie and her favorite stuffed animal “bunny”. She loved yogurt and puffs and anything we gave her to eat! She was a good baby. Then she turned 1 year old and was surrounded by her friends and family for a 1st birthday celebration. She blew out her candles, ate some cake and cuddled close to mommy because what we didn’t know was that a very large, scary, deadly tumor was growing in her little body.   A few weeks later she was diagnosed with cancer and our fairytale turned into a nightmare 9 months later when Gracie’s story ended.

It’s 6 years later and here I am sitting in my car outside the damn cemetery. This is where she is. This is where I have to go to “visit” my daughter. I’m sitting here in the car looking through the fence to her grave thinking of her and all she did in her short 21 months with us and am furious that we didn’t get more time with her. I’m so angry that her story ends here and that I don’t get to talk about the terrible two’s, three’s, four’s five’s, six’s and seven’s. I’m even more angry that her story doesn’t continue through her teen and college years or into her adulthood.  It’s cold, the cemetery is locked and I sit in my car staring at her grave through the fence. I see snow covering the ground where she lays and her Christmas tree is frozen to the ground. I can walk in, but right now I can’t move because it’s cold, she’s freezing in the ground, and I’m so darn angry because she’s dead.

January 17th was one of the worst days of my life. It was the day we said our goodbyes to my 21 month old daughter. It was the day she took her last breath. There is absolutely no one in this world who is evil enough to deserve to feel the way we felt that day, the way I feel now. Six years later and I’m still mad, I’m still sad and I still have a lump in my throat and a hole in my heart thinking about what happened to my daughter that day. I miss her terribly and just want to have her back. But as I sit here angry and in tears I know deep down that there is nothing I can do to get her back. January always seems to hit me the hardest and I let it. I reaIize as time passes without my Gracie here that I can’t focus on the negative and sadness everyday, all year long like I am today. There is good in this world. There is Luke and Ava and my friends and family that make everyday a little brighter. I have to let January hit me hard and I have to hit it just as hard back to let my grief out now so that I can focus on the good and my beautiful family the rest of the year. As I sit here in the car and eventually make my way over to her gravestone I will cry, I will be angry, I will think about the horrific images I

still have in my head from that day and I will grieve. When I leave and when January 17th passes I will get myself back together for my family and for myself. Everyone is entitled to a bad day or a bad week like I am having, but we can’t let it define how we live. Gracie was robbed of her life and wasn’t able to continue her story, but that doesn’t mean I shouldn’t. As mad as I am that she is gone, she gives me reason to try to live life to the fullest.

Even though Gracie is not here she continues to teach me a lot about this life we live. Life is definitely a crazy ride and we don’t know what will happen tomorrow. All we do know is nothing is guaranteed so we might as well give it everything we’ve got today. When I think about Gracie and the day she died I know that life is precious. So in memory of Gracie and in memory of so many others whose lives have been cut short let’s live life to the fullest and take time to laugh, listen to music, dance, be happy, cuddle your dog or cat, hug your children A LOT, talk (instead of messaging) your friends, go out to dinner, have people over for dinner, go to the beach, get together with family and friends, have a Sunday funday or Sunday family dinner, eat at the dinner table as a family, go for a hike, travel, do what makes you happy and change it if you’re miserable, GIVE GIVE GIVE to others (this really makes your heart happy), say I love you, and make as many memories as you can.

My personal goal this year is to try to do all those things listed above A LOT and to make as many memories as we can, not only for my family but for the foundation too. After Gracie passed away and I was left with all her toys and clothes I realized that those items were nothing without the person that comes with them. So I’m going to cut back on those material things and spend it on memory making with those I love because those memories are worth more than anything I can buy and will last a lifetime. As I snap out of the sadness that this month brings to me I’m looking forward to our families first memory making trip this year. I will not let January 17th get us down, but instead we will celebrate the day Gracie became an angel by having family time away from home. We will talk about Gracie, we will smile, we will laugh, we will make memories and we will think about all the love our Gracie girl put in our hearts for her and for us to give to others. Happy Angel Birthday, my Gracie Girl.

“The loss you feel when a loved one dies is not the worst feeling in the world. Missing them for the rest of your life is the worst.”

Christmas is the Time to Say I Love You

All is calm and all is bright on this early morning as I sit in my living room with nothing but the Christmas lights and fireplace on. As I write this morning I’m thinking back to my ride home from work this past week. Christmas music was playing and instead of turning the channel I listened and was brought back to our Christmas 7 years ago. Seven years ago was our last Christmas with Gracie. A smile and a feeling of peace and gratitude came over me as the song “Christmas is the time to say I love you” came over the radio. I began thinking about all of the amazing and generous acts of kindness I witnessed during that Christmas. They all brought a big smile to my face and a sense of calmness to my racing, anxiety filled brain and body. A feeling of wonder filled my mind as I thought about who did what and how everyone pulled together to make Christmas 2011 one of the best Christmases we’ve ever had. It wasn’t the best Christmas we ever had because of the number of presents under the tree. It was the best Christmas we ever had because we witnessed the true meaning of Christmas.

It was a time filled with love and generosity that went above and beyond to make us not feel so alone, sad or afraid. That December I was contacted by a group of friends while we were in the hospital with Gracie. They wanted to decorate our house for us so that when we came home from the hospital it was done and we could enjoy it. This group of people managed to get and set up a beautiful tree for us. They didn’t stop there. They took down the 20 plus bins of Christmas decorations from the rafters and decorated our house. They sifted through the many candles and coffee mugs I’ve received over the years from my students and had a good laugh at the fact that I have kept every single one of them! Soon after I received an intervention on “cleaning out“ the many, many, many mugs and candles! These laughs were a welcome distraction at that time! When we got home from the hospital we were treated to a private caroling session on our front lawn from a group of 5th and 6th grade girls and teachers from my school. It was beautiful and brought smiles, tears and tons of love as I looked around at all the people who cared so very much about Gracie and my family. That Christmas we were surprised by many food and gift card drop offs outside our door, as well as gift baskets filled with comfort items for our family. Blankets, board games, snacks, Christmas movies, holiday trinkets to help us get in the spirit of Christmas in our own home. These are just some of the things that happened that Christmas. You see we couldn’t take Gracie out because of her frail condition at that time, but you all brought Christmas to us. You brought the true meaning of Christmas to us. You brought the gift of love, laughter, peace and smiles to our hearts and minds as we were losing our baby girl. As I look back at that Christmas the words to that Christmas song come to my mind again… Christmas is the Time to Say I Love You. I believe that’s what you all did. Seven years later I get it. We all wanted a miracle for Gracie to get better but we could not physically do that. Instead you surrounded us with gifts of love, as Christmas is the time to say I love you. So this Christmas I want you all to know we love you too.

As quick as that smile and feeling of peace comes to me during the holiday season I’ve learned that it can quickly turn into tears and sadness. I miss Gracie. I wonder what Christmas would be like with all three of my kids here. I also feel saddened that there are other families that are facing the same journey as we are. It has been a tough year at Amazing Gracie’s Gift. Some of our families will be spending this Christmas in the hospital. Some are facing their last Christmas with their child. And some are facing their first Christmas without their child here. We have lost Amazing Gracie’s Gift supporters that have been with us since Gracie’s diagnosis and their families are facing their first Christmas without them here. We also have some supporters that are very sick and may be celebrating their last holiday with their family. My heart aches for all these families. But at the same time a smiles crosses my face and my heart skips a beat as I see and hear our community help all these families as much as they can, like they did for us. I see and hear the true meaning of Christmas all around me. I see and hear the gift of love, laughter, prayers, support and kindness for all.

My Christmas wish this year is that we can continue to put smiles on faces, a feeling of peace in minds, and our hearts will continue to give to those who really need it right now. Spend time with your loved ones this Christmas because you don’t know what the next year holds, what next month holds, not even what the next day or minute has in store for us all. And please remember that Christmas is the time to say I love you.

Christmas is the time to say “I love you”
Share the joys of laughter and good cheer
Christmas is the time to say “I love you”
And a feeling that will last all through the year
by Billy Squier

Meet Ava

This beautiful little girl and her family are a good reminder for all that childhood cancer awareness is not just for September. Children are diagnosed with cancer everyday. These children are fighting for their lives everyday. Some of these children made it to remission and some did not. This is why we raise awareness everyday and more importantly take action each and everyday. After receiving Ava and her family’s story this morning I stepped back out of this crazy life of gossip, stress, and worries and reminded myself once again to enjoy and make memories with those we love. Much love to Ava and her family today and always.

“It was a Tuesday. It was the perfect blend of almost summer and sunshine. My girls were 22 months old and 6 months old. Ava, our oldest, wasn’t feeling herself after the 10 days they asked us to give her following her first appointment. She was flushed, weak, and still having trouble walking. The “virus” that they said she probably picked up earlier that month turned out to be a little more serious than they anticipated . We were told going to the ER would help to get the results of scans quicker since it was now almost 430pm. Over the next several hours, a tumor was located in the base of her skull. My girl had no idea what was going on, but we were together so she knew it would be okay. We were admitted to D7 at 11:50pm, after 6 hours in the holding tank known as the pediatric emergency room. We had the clothes on our backs, a juice cup, one extra diaper, a cell phone with a low battery life, and my wallet. We were together and alone, Ava and I.

The next 17 months of our life would center around treatment to cure Neuroblastoma stage IV, a rare and aggressive form of childhood cancer. Only 700 cases per year are diagnosed and only a fraction of those are stage IV. We centered Ava’s life around keeping her a child. We did everything possible to keep her happy, motivated, smiling, engaged, and thriving. We used speech, music, and occupational therapy professionally but the real therapy required no assistance from outside sources.

We played; finger paints, puzzle stations, markers, sticker art on skin, glow sticks before bed, placing trinkets in varied sized cups, dance parties, water table fun, bubble foam at bath time, bubbles, tea parties. As a mother of a child with pediatric cancer, my full time job became play. I would do whatever necessary to provide my daughter real life in a world which did not allow for her to be exposed to other children, public facilities, or even the outside at times. Fear of sunburn from radiation, fear of infection when immunocompromised, and fear of bruising or bleeding from low counts pushed PLAY into over drive. Ava was always inspired, active, and full of spontaneous play. What she lacked was fun time with her sister, because treatment often did not allow for togetherness.

One summer day at clinic, the Child Life team shared that Ava would be a recipient of Amazing Gracie’s Gift. I didn’t know what that meant, but tears instantly started pouring from my eyes like a faucet. As the foundation was explained, I instantly knew what our gift could be if it was possible. We wanted to get the girls something for them to play with together, but fear of a financial commitment when we had so many other “unknowns” in treatment was scary. Our wish for our daughters was a playhouse. A few weeks later, we had a very large package on our porch with a few other items for our girls. Later that night, the playhouse was set up.

Normally, these types of houses are for outside. But for our girls, we wanted to encourage year round togetherness through all the stages of upcoming treatment. Addalyn, who was only 6 months at Ava’s diagnosis, was now walking (and running for that matter). So here it sits, in my kitchen, large and in charge. It is full of play food, chairs, books, stuffed animals, and beautiful memories.

Ava passed away on September 16, 2017. About 6 weeks ago, my daughters were playing in this playhouse together. This gift from the foundation is more than just a toy. It was the gift of memories. A gift of seeing the joy in Ava’s eyes as she play with her sister. It is a gift of a very warm sensation in my heart, knowing that my daughter lived a life full of fun during her 3 short years. This gift to our children carries beautiful reminders to us as little sister eats her snack in the house and fills her basket with play food. When she opens the windows and looks out, I remember her opening them and looking out at her sister giggling. When I hear the door bell on the house, I remember Ava standing inside and opening the door for her sister to come in. My girls. Always so gentle and full of love.

Saying cancer is hard is an understatement. It takes over the entire dynamic of a family. It forces siblings to be apart from one another. It forces parents to allocate attention to saving the life of their child. Parents, grandparents, aunts, uncles, family friends all help to ensure that the needs of the healthy child remain a priority. The healthy child often gets lost in the shuffle. Our gift was for both of our girls. The memories that Amazing Gracie’s Gift was able to give us will literally carry us through this very difficult time in our cancer journey. Having such extra wonderful memories stare at us each morning while we drink our coffee, or while we cry in private at night while Addalyn sleeps, gives us such comfort. We will forever be grateful for the love we were shown through this foundation. And I, as the quarterback and mother of a child fighting cancer, will forever be grateful for my new friendship with Lisa & Geoff and the legacy that they carry on for their sweet Grace.”

With Gratitude,

Ava’s mom
Leanne Baker

One.day.at.a.Time

Meet Amelia

Meet beautiful Amelia! This little girl’s smile is contagious! We are thrilled that Amelia is doing so well and that we were able to help her family during one of the most difficult times in their life. Meet our AMAZING kid of the week, Amelia!

“My name is Melissa Ann MacNeil Spencer. I am given many titles on a daily basis: friend, foe, wife, Respiratory Therapist, student, sister (twin), teacher, daughter, confidant…only to name a select few. However, these titles come and go more frequently than the seasons do change.

There is only one title I have taken on as my own permanent identity with the highest of pride and honor during my delightful stay thus far on this beautiful, green Earth…MOTHER. I am a mother. I am a mother of two amazingly beautiful and happy children. Hayden and Amelia, ages 8 and 4, respectively. It was a title imprinted on my soul on both April 29, 2009 and March 9, 2013 without written or bedside consent. I became an infinitesimally better woman both days I gave birth to such delightful beings. It was a title given free of lessons and free of knowledge of what is to come. A title given to a few select women who are brave enough to carry its beauties and its terrors. It is a title I carry with the greatest of honor. I sacrificed everything I had and was to bring them into this world: my life, my freedom, my own selfish identity, my body; and will sacrifice everything I have and am to keep them in this world as long as I am possibly given the chance.

My youngest baby, Amelia, had been fighting symptoms for a few months late last year that confounded many of us and exhausted many sleepless and painful nights in their agony to understand what brings her such screams of agony. We brought her to the clinic multiple times without any form of real diagnosis and one day her pediatrician suggested a head MRI, which my husband and I both thought was inappropriate due to all of her symptoms being mainly gastric up to that point. Yet, we agreed and waited very impatiently for 2 weeks to get the imaging done.

Amelia was diagnosed with a very large mass in her brain by MRI on the worst-day-of-my-life October 21, 2016. What started as a G.I. confusion, swiftly became a neurologic condemnation. My family quickly became aware of the terrors unseen horrors can bring in the blink of an eye. My brother-by-marriage, Matt Spencer, given the duty of Reader-of-Amelia’s-Destiny, was the first person to understand the significance of the tragedy that lay ahead for myself; husband, Lucas; sisters, Jen and Christina; grandparents, Pat, Ted, Mark, Penni, Barbara, and Rick; pediatricians Phil Heavner and Anna Gadomski; closest of friends and colleagues; coworkers in both ICU and Respiratory Care; and many other lives Amelia touches on a day-to-day basis and those who saw first-hand our struggle that morning with tears and defeat in our eyes as we wandered through the corridors we walk on a regular basis in search of the embrace of a child too young to understand the miseries to come. It was a tragedy and sadness for anyone who knows this beautiful child.

I am all too awe-stricken by the swiftness in which everything was coordinated upon the news of Amelia’s misfortune. Within the matter of hours we were already on the road to from Cooperstown to Rochester to meet with the Chief of Pediatric Neurosurgery and a Pediatric Oncologist to decide the all-too-necessary events to alleviate the pressure and size of the mass within her head. Surgery was already scheduled for the following week before we were even packed, and could be squeezed in quicker if her symptoms decide otherwise.

Amelia has since had 2 surgeries, 3 rounds of induction chemotherapy, 6 weeks of radiation, and 3 rounds of consolidation chemotherapy. Her MRI’s have all been clear since the 2nd surgery, without a hint of metastases, and we return to Rochester next week for all of her completion of treatment testing and MRI, so we are hoping for the continued disappearance of any abnormal cells and for remission to be a permanent condition. She started preschool this past week and is a thriving, active, and happy little girl. Her resilience through everything she has been through is inspiring to all who are lucky enough to know her.

It is times of such agony that I am reminded of the beauties I am surrounded by every day. On that horrific morning of diagnosis, I was and am so grateful for the MRI staff, the Gods of Anesthesia that kept my baby safe -sedated and intubated- during her scan, the family of nurses who walked by and smiled at her as she unknowingly awaited her moment of fate, the Respiratory Care family that texted me at 5 am as I made my coffee unknowingly headed toward my day from hell, the highly-esteemed physician who stopped and gave hugs, knowing that was all he could do seeing the looks of despair in our eyes as he met us unknowingly in the hallway. The kind acts done through this entire nightmarish process, from caring for my best friend Donkey (our faithful pup) to sending care packages for the kids’ car rides back and forth to Rochester, to the mass quantities of texts, emails and calls since then that have been overwhelming and beautiful in their search for help and sympathy in a time so ugly by anyone touched by its tragedy and to monetary help in a time when working was near impossible.

This is how Amazing Gracie’s Gift helped us. Amelia was too old to be given the “trip of a lifetime” as she was diagnosed at age 3, but Lisa was very determined to help us, hunting me down when all I could cope with and handle doing was getting out of bed each morning, and the foundation sent us a check for $2000 to help with any kind of expenses needed to help with her treatment. This and many donations given to our family during this tragic time helped us focus on getting Amelia better rather than having to worry about work and finances. We will forever be grateful for the alleviated stress Amazing Gracie’s Gift has afforded us and they will be forever in our prayers. THANK YOU SO MUCH!”

Meet Jacinto

Meet Jacinto! This beautiful little boy has been battling cancer since he was 2 months old. His story will bring tears to your eyes, but his smile will warm your heart. Meet our amazing kid of the weekend, Jacinto!

“On December 7th my son had turned 2 months old and he was very sick and puking everywhere. His eyes started down shadowing as well. That is the day that changed our whole world. I took Jacinto to Albany Medical Center. They couldn’t figure out what was wrong at first. Then they did an MRI and told me he had a brain tumor. It didn’t hit at all. They told me they had to admit him and they had to take him down for an emergency surgery. As we were walking down and I was getting ready to put him on the bed it hit me and I couldn’t help but cry. I didn’t understand. What do they mean he has a tumor? Is it cancerous or isn’t it? I had a lot of questions in my mind. They took him in and placed an EVD to relieve some of the pressure. The doctor told me we had just made it in time. About a week later he had a biopsy done and 2 days later it came back that he had atypical teratoid rhabdoid tumor. Stacey Porter was with me that day and I asked her what will happen. She told me it was cancer and she doesn’t know, but they are willing to try to cure him. Hearing all of this was very hard. Why does my baby have cancer? He doesn’t deserve this. Why him? He’s so innocent. A few days later they had made a plan to start chemotherapy. This meant he would be in the hospital for Christmas. They took him to surgery on December 15 to have a shunt placed and then sent him over to general pediatrics a few days later for chemotherapy. Chemotherapy was hard. Being a parent and seeing your child suffer and not being able to do anything about it is hard. He had 2 rounds of high dose chemotherapy which shrank his tumor. From there we were sent for his stem cell collecting in Delaware for a week. We also had an initial visit at Montefoire Children’s Hospital because that is where he would have his stem cells. From there we came back to Albany Med where he had surgery. The surgery was 10 hours long and boy did it feel like forever. I didn’t know what was going on and I thank god for that surgeon. He was able to get the whole tumor out. A few days later we were told our son was blind and he had lost feeling of his right side. He didn’t move his right side for days. It hurt to hear my son went blind from all this and that he couldn’t move. A few days later we felt like he could see something and he started moving his right side a little. We left and went to Monetefoire Children’s Hospital for stem cells. We were only there a week before hearing our little boy relapsed. We came back to find he had another tumor. They went in again and managed to get 80 percent of the tumor. The next day the doctors pulled us aside and told us that our sons chances of surviving are low and because it came back and just keeps spreading his chances are really low. They gave us an option to try more chemotherapy or to just let the cancer take its course. I was crying. I looked at how he was so happy and decided we wanted to try more chemotherapy. From there he was out patient for about 2 months and did 2 rounds of chemotherapy. We did an MRI at the end and found out his tumors shrank. There was 2 on each side of his head that were 1cm. We were told he would have to do multiple surgeries to remove them and it may be a lot but we didn’t care. He went to surgery and they removed what they had saw on the MRI and luckily it was a lot of scar tissue. He went back in a second time and did 7 biopsies. All were negative and they removed what they saw on the left side of his brain. They never had to do the right side. After these surgeries, Jacinto got a shunt infection and they had to remove his shunt for 3 weeks. They placed his shunt back in and he was sent to Children’s Hospital in Rochester where he has just finished his first round of stem cells. He did amazing! He still has 2 more to go and I’m praying he does the same as he did this time. He has gone through 20 surgeries all together. He is only 10 months old and to go through all of this is a lot. At this time Jacinto can only lift his head. He can not sit and he can not eat. He can not walk or do anything that he should be able to do at 10 months old. This boy is my hero and he shows me a different part of life. When you look at him all your troubles go away. I am glad this little boy is mine and I am glad he is so strong. It makes all of us stronger.”
#Falconstrong
#Teamjacinto