As May approaches I think about all those who are graduating college this month and setting forth on their future plans and careers. One of those who will be graduating this May is my husband, Luke and Gracie’s dad- Geoff. After Gracie’s death, Geoff decided to pursue a career in nursing. Many of you may ask why would he decide to go back to school for another degree at this time in his life? One of the reasons he went back to school was because of our experience with Gracie and because of those who deeply cared for our Gracie while she was sick – her medical team.

I need to stop right here for a moment and give a huge shout out to those who took care of Gracie. When I say medical team I am referring to the many different professionals in the hospitals and clinics we encountered along our journey. I often hear the phrase “it takes a whole village to raise a child”, well I have a similar quote about a hospital- “It takes a whole hospital to make a child feel better”. From the moment we got out of our car we were overwhelmed with the kindness and caring ways of everyone- from the valet staff, to the secretaries, to the social workers, to the clinic staff to D7 north staff and the many more that I know I am forgetting. You all made our day a little brighter each time we had to visit.

But most importantly, I cannot forget the AMAZING doctors and nurses that came into our lives. For the 9 months that Gracie fought you were our heroes, you were our angels, you were our family. You saw us through the good times, you saw us through the tough times, and you saw us through the unthinkable. I will say it again- you were our heroes, you were our angels. I know that your heart and soul goes into everything you do when you get to work. Diagnosing, healing, caring for, tending to, mending, fixing and opening your heart up to your patients and their families is what you do. My husband and I and our families saw this every time we set foot in the hospital.

You may not realize what else we saw or knew as our Gracie was fighting for her life. We know it had to be hard on you. We know you ached. We know you put your heart and soul into trying to find the right plan, care and treatment for our daughter and your many other patients. We know you cared for our Gracie as if she were your own because some of you are parents yourselves and would want the same care for your child. We know you cried- with us in our room and without us when you left the room. We know you worked overtime, missed lunches, breaks and barely had time to use the bathroom because you spent all the time you could making sure my child and your other patients were cared for and safe for the moment.

To Gracie’s medical team, all those that came in and out of our day each time we set foot in the hospital, thank you for choosing the field you are in. You are smart. You are brave. You are so strong to be helping patients and their families through the scariest times of their lives whether they receive a miracle or not. I’m sure that you remember all the names and faces of all you have treated and loved and will continue to care and love all the new patients you will encounter, even though your heart may have just been broken by a patient who lost their life. It has been over 3 years since Gracie’s death and I still think of all of you as not only our friends, but our family. I cannot put into words the amount of respect and admiration we have for you. Thank you for opening up your hearts to us and giving our daughter the best possible care you could. My husband went into his nursing career because of you. Thank you for showing him what an amazing, but tough job you have. Thank you for showing him what a textbook can’t teach: Saving and changing lives, but doing so with kindness and love.

To my husband, his classmates and all those that are graduating nursing school or an area in the medical field- What I saw from our nurses and medical staff the 9 months we were in and out of the hospital are the qualities that make a great nurse or medical professional. Please put your heart and soul into this career. Please do your job, but also love your job, truly and deeply care for each patient with endless respect and dignity. You will end up being heroes and angels to many families.

To Geoff~ I am so proud of you and all of your accomplishments. Despite all the hardships along the way, you persisted, you endured, you never gave up, you persevered, you kept going, you stayed on course, you prevailed. I love you.

Welcome to the 4th annual Amazing Gracie’s Golf Scramble and a big thank you for spending the day with us and raising money for Amazing Gracie’s Gift Foundation. The funds raised today will be helping many families with children battling cancer or a life threatening illness.

The name of our foundation starts with a very important word- AMAZING. The definition of amazing is “something that is so wonderful, it is hard to find the words to match. Something that makes your heart beat faster or your heart melt. Something that tops everything else and always crosses your mind”. Gracie, my daughter was called Amazing and through this foundation we are trying to continue her legacy of Being Amazing. I believe that was achieved today. You all continue to amaze us with your generosity, support, kindness and motivation each day.
I’m sure you’ve seen our motto on some of our bracelets and shirts that say “Be Amazing, Like Gracie” . Well, I’ve taken that phrase and compiled a list of all the amazing things I’ve seen today :
– Be amazing like all our volunteers that so graciously donated their time to help us out.
– Be amazing like our sponsors that helped us raise over $9,000 before the tournament even began.
– Be amazing like those who took the time to make and donate baskets and gift certificates for today’s auction.
– Be amazing like our 160 golfers that came out and golfed for a great cause today.
Speaking of golfers I saw some of you being amazing:
-Be amazing like Courtney and golf 18 holes with only 1 club!
-Be Amazing like my team and have a running tab on mulligans that’s more than $1,000!
-Be amazing like Team Super Proulx’s wardrobe! You can spot their amazingness anywhere ☺

Being Amazing hasn’t just happened here today, there are people, kids and organizations that are also amazing everyday:
-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 Donate for Life. You may have noticed a bag from Donate Life included in your golf bags. Please take a look at this as it is very near and dear to our hearts. One of our friends just received a heart transplant, another friend anxiously awaited a lung transplant before she passed away and Gracie’s next step in treatment would have been a liver transplant. So be amazing and Donate to Save a life.
-Be Amazing like all the kids who are so bravely fighting for their lives and also BE Amazing for the children our foundation has helped:
-Be amazing like Chase who is 3 years old and Kyla who is 4 years old. They both recently had a bone marrow transplant.
– BE amazing like Zoie who is 2 ½ years old and is fighting a very rare cancer.
– Be amazing like Arionna who is 3 ½ months old. She was born with VCF and needs a life threatening heart surgery.
– Be Amazing like Benjamin, a 4 year old who has a rare liver disease and is also battling lymphoma.
-Be amazing like Asiana who is 12 years old and has just been placed on Hospice as her glioblastoma has relapsed and there is no more they can do.
-Be amazing like Kennedy who is here today and has bravely fought the fight and beat it!

And lastly, my motto and what keeps me going on a daily basis- Be amazing like Gracie.
Thank you for your love and support and Please continue to be amazing and help Amazing Gracie’s Gift Foundation make wishes and dreams come true for so many little ones.

How did I get here? As I sat down to watch TV the other night there was a picture frame out of place and in my view of the TV. I stopped and looked at the picture for a moment and got lost in it. It was a picture of Geoff and I when we were young, in our 20’s, tan, skinny (lol) and having the time of our lives at a wedding in Jackson Hole, WY. We were dating at the time and looked so happy and carefree. My how our lives have changed, and how or why did our lives go down a path no one wants to go down? I looked at that picture of Geoff and I and instead of thinking “Wow, how did we end up with 2 beautiful children that are 5 and 6 years old, a great house, a great family and a great life”, I thought, “How did we end up here? How did we get handed a life where our daughter dies a terrible death from cancer and doesn’t make it to her 5th birthday”? We were so young, so happy, and so carefree- we never saw this coming. In that picture I saw love, happiness, energy. I now look at us and see love, sadness, emptiness and plain tiredness.
I’m sure I’m not alone when it comes to thinking about or reminiscing about the days past when looking at pictures. It’s just a little different for a parent who has lost a child. I’m sure we all do the same thing with our kids, especially around their birthdays. Most people look at old pictures and can’t believe how time flies and how they’ve changed and look so grown up. I look at the pictures of Gracie on my walls that will never change. Gracie will always be under 2 years old in every picture I have. I will never have a 2, 3, 4, or 5-year-old picture to look at.

Gracie would be 5 years old on April 14th. Since Gracie’s death her birthday has always fallen on a weekend or during my spring break. This year it will fall on a Tuesday, a day of school and work. I really thought I’d be ok going to work. It’s been over 3 years and I can handle this, right? Wrong. When your child’s birthday approaches a parent starts to think how are we going to celebrate, what kind of party will she want, who to invite, where to have it, what present to get them… and more. I don’t have to worry about any of that, Gracie isn’t here to do any of this. I should be able to handle this. But I am wrong. My mind has been consumed with wishing I could do all of this for my baby’s 5th birthday. I’m not going to lie, the last few weeks have been hard and I can’t help but tear up and get mad whenever I think of her 5th birthday. A very special day for a parent and a child is now one of the hardest days of my life to get through. And once again I think- How did I get here?

There are at least 2 days a year that are extremely hard on us as a family. One of them is the anniversary of the day our child became an angel. No matter how many years go by, the anniversary date of when our child died brings back deep emotional memories and painful feelings. The second is her birthday. We still count birthdays and fantasize what Gracie would be like if she were still living. Birthdays are especially hard for us. Our hearts ache to celebrate our child’s arrival into this world, but we are left becoming intensely aware of the hole in our hearts instead.

So this year I’ve decided I cannot go to work on Gracie’s birthday. As much as I want to, I know I won’t make it through the day. I know when I leave work I won’t be able to come home, kiss my birthday girl, make her a special dinner and eat birthday cake with her. But I also won’t sit around and cry all day. We will do something good and productive in her memory. We will head to the Ronald McDonald House in Albany and cook and serve lunch there in honor of Gracie’s 5th birthday.

I am still not sure of how I got here, but I wouldn’t take back that special day we brought Gracie into this world for anything. Happy birthday sweet girl, I hope heaven is throwing you a big party.

It’s so cold outside. Every time I visit Gracie’s grave all I can think about is how cold it is outside and how her body must be freezing below my feet. It’s an awful feeling. I long to go to her gravesite to be near her and once I get there all I can think about is how my baby is buried, 6 feet under in a casket. She’s got her pink fleece dress on with warm tights. And I keep thinking, why didn’t I put her in her warm, fuzzy pajamas? She’s got her blankets and her bunny, her pillow, some stuffed animals, and a rosary in her hand. She’s all comfy, right? And then it hits. She’s dead. She’s been dead for 3 years. It’s cold, it’s dark and all I want to do is grab a shovel and get her out of there. I want to hold her, to comfort her, to make things better….and I can’t. It’s a horrible feeling as a parent to know you can’t help or save your child. A feeling of helplessness sets in. I feel sorry for myself, for my family, for my Gracie. The flashbacks of watching my baby suffer, her pain, our pain, the decisions we had to make, and then the why’s. Why did this happen? Why didn’t Gracie get a miracle? Why did she have to get a cancer with no known treatments? Why didn’t she survive? These are all questions that absolutely no one can answer. It’s something that can drive me crazy….insane. Insane as thinking I can dig my daughter out of her grave and she’ll look and be ok.

Some pretty dark moments here that I’m sharing with you. You’re probably wondering why I’m sharing them. I share them because when these moments finally pass, I’m proud. I’m proud that in these dark times Geoff and I can find our way out of them. We’ve realized we can’t let these horrible memories overshadow the tons of great memories we had. We can’t let the horrible thoughts interfere with the bright future we can have as a family or we will get lost. Over the last 3 years we’ve learned it’s ok to feel this way as long as we can find our way out of the darkness. How do we find our way out? It’s simple- Faith, Hope and Love.

Faith. We have faith that Gracie’s ok. We have to believe Gracie is in a place where she is safe and where we will see her again. For us, that place is Heaven. We know that we want to see Gracie again one day in Heaven and for this reason our faith helps get us through our rough times.

Hope. Hope changes everything. Hope can take the horrible sadness we feel and can change it into something positive. For us that’s Amazing Gracie’s Gift. Hope comes from this foundation we have built. It gives us strength and reason to keep going and helping others in Gracie’s name. We hang onto the hope that we can make a difference in lives and hope that one day there will be a cure for cancer.

Love. The love from our family and friends has been non-stop. It supports us and can get us through anything. Plain and simple- You are all awesome and we love you back ☺

January 17th is our Gracie’s angel day. It’s so cold outside, but we have Faith, Hope and Love to get us through it.

The pressure is on – Christmas is coming! I vowed not to stress about gifts this year and I’m not. But I have started the “get ready for new stuff Christmas clean out”. Does anybody else do this? If you know what I’m referring to you know it’s when you start looking at the many toys that have accumulated throughout the year and start to panic because there’s no room for anymore! It’s then that you decide it’s time to clean out those toy bins. Well, it’s happened here, and I along with Luke (with much convincing) started cleaning out the toys. It’s amazing what accumulates in those bins!

As Luke and I started cleaning out we had a “keep” pile, a “maybe keep” pile, a “garage sale/giveaway” pile, a “junk/throwaway” pile (can you believe how many happy meal toys and 25 cent machine toys you have??!), a “broken toy” pile, and here at my house we still have a “Luke” pile and a “Gracie” pile. I know, I know- it’s been almost 3 years she’s been gone and I still have her toys. We just weren’t ready to get rid of them yet. But I think we’re ready. It was a little easier having Luke with me to do this. He would simply say “this is Gracie’s, but it’s a baby toy and if she was here she wouldn’t be playing with it anymore”. True statement. So I went with his philosophy and hesitantly put her toys in the “giveaway” pile. There were some that were very hard to let go, but it truly didn’t make sense to keep them. While Luke and I were going through the toys we had a lot of fun. We reminisced of when he or Gracie got that toy, told stories of when or how they played with that toy a while back and of course we played with every single toy. Whether it was 10 sec. or 10 minutes every toy was played with. This cleaning out process took many hours that could have been replaced with the hustle and bustle of the season but I’m so glad it wasn’t. When I look back on that day we had fun because we were doing something together. It was very hard to get rid of Gracie’s toys, but what is the toy without the child? Luke and I had fun that day because we were playing together, the toys didn’t make it fun, we did.

This Christmas take some time to watch your kids, grandkids, nieces, nephews, friends and all of your loved ones excitement and wonder as they open up their presents and play with them. They will remember having fun and playing with YOU more than playing with just the toy! We can attest to that. Geoff, Luke and I remember all the fun times we had playing with Gracie and her toys when she was here. We can tell those stories because we were there playing with her- moments we will cherish and remember forever. I hope you can all try to take some time to play and have fun this Christmas season, it will be a memory you will never forget.

Merry Christmas and Happy New Year!
Love,
The Lawton’s

P.S.- I will tell you that we did throw a couple of little things of Gracie’s back in those toy bins so the next time we clean out we can tell our Gracie playtime stories again <3

September is National Childhood Cancer Awareness Month and it’s been weighing on my mind that summer is over and I need to get back to writing my blog for Amazing Gracie’s Gift Foundation. But what should I write? I’ve got the topic, but what more can I say about it? It seems pretty important, but isn’t everyone aware of childhood cancer these days? It seems like everywhere I turn another child is being diagnosed or maybe I’m just more aware because my child died from childhood cancer…

The word “awareness” made sense years ago when children were diagnosed and quickly passed away without anyone following a story. There were few if any treatments for children with cancer, therefore people weren’t “aware” this was actually happening. So an awareness month made sense back then. Fast forward to now and we are hearing stories of children fighting the battle against cancer. Probably 10 years ago Gracie wouldn’t of survived a few weeks after being diagnosed. There wouldn’t have been time for me to get her story out to you. But times are changing. Gracie’s story got out to you. Gracie died 9 months after her initial diagnosis. We had 9 months to share her story and her battle with cancer with you. She lived long enough to get the story out because we had treatment, but she died because there were no more treatments to chose from.

We now hear many stories of children battling cancer. Why? Kids are fighting longer and harder because people are aware and kids are receiving chemo drugs. Unfortunately these chemo drugs do not always cure cancer, they often just extend their lives.

So, awareness of childhood cancer is now out there, but now what do we do about it? First, if you find you are not aware of childhood cancer I will give you some of the grueling and scary statistics on childhood cancer and you can become aware of what this monster can do to our children and their families.

– Every hour a child is diagnosed with cancer. Every 6.5 hours another young life is lost to this disease.
– Cancer is the leading cause of death by disease among children under the age of 15 in the U.S.
– Survival comes with a cost: 73% of pediatric cancer survivors develop at least one chronic health condition because treatments are so harsh.
– Despite these facts, childhood cancer research is vastly and consistently underfunded.
– Only 3.8% of all cancer research funding allotted by the federal government goes to children……

This last statistic really gets me. Why? Because childhood cancer is not profitable. My daughter died because her cancer had very little funding and the research and drugs to save her wouldn’t be profitable. Basically, Gracie was not worth saving. All our kids fighting cancer are not worth saving?

If this isn’t enough go to your computer and google “childhood cancer statistics” and you will find even more facts that will make you aware.

Childhood cancer is a killer. Many people don’t want to talk about, they don’t want their day ruined, they don’t want to be sad. They’re irritated when they see so many videos or posts related to childhood cancer. Just for this month please try and listen and watch and understand the importance of going gold in September. I promise after this month your facebook newsfeed will go back to the newest viral videos, “what percent are you?” quizzes, “Let it Go” covers and dog and cat videos. But for now lets all make Childhood Cancer the spotlight!

Now that we are all aware the next step is to do something about it- take action. Take this month to be aware that childhood cancer killed our Gracie and so many more children, but instead of letting that depress us let’s do something about it. Look at the picture I posted of Gracie on this blog (or take any from the website). Print it off if you like and take each day to look at the picture, think about what childhood cancer did to Gracie and be reminded to do something about it. Take action in some way- big or small.

Take this awareness month and do something, take action that will help us find a cure or help a family. Make a donation, run a race, have a lemonade stand, host a dress down day at work, cook a meal at The Ronald McDonald House, write your congressman, help a family who has a child with cancer. Can’t think of anything to do? We’ve created a list of ways you can help us help others. Check out our website under “50 States of Grace” or email me and I can give you ideas.

I am very grateful and thrilled to see so many in our community are already taking action. Just in September we have donations coming in from a marathon runner, a Holliewood workout event to “Pound” out cancer, school and business wide dress down days, and in the past we’ve even had a family from another state hold backyard movie nights in her neighborhood! So many of you continue to show your support to my family and Amazing Gracie’s Gift Foundation. We thank you for taking action. Those who are taking action spread the word and encourage others to be aware and take action too.

Cancer scares me and I feel like everyday and every situation and every doctor’s visit the “c” word is going to be said again. Everyday I am aware of childhood cancer. I am very aware that Gracie is not here. I am aware that my child was robbed of her life at 21 months old and that the pain of having her no longer with me still haunts me daily. I am aware that anytime I am alone I cry because my only thoughts are of her, what happened to her, how my family of 4 is now a family of 3, and how a piece of me will always be missing. I am aware that Gracie should be starting pre-k this fall. I am aware that my 6 year old, Luke wants his sister back and asks me questions I don’t know how to answer.

I am aware that my husband has to kiss a picture of Gracie each night before bed, feeling cheated that he’s missing out on raising his little girl. I am aware of the pain that losing Gracie has caused our parents and our entire family. I am aware and mad over the startling statistics and funding for childhood cancer.

My life is full of awareness. Please help me in taking action.

June, July, August… the good months

Yay! Summer is almost here! As each new month and season comes I am always faced with the memories I have of Gracie. Somehow each month stirs up the emotions and memories of our times in 2011-2012 because this was our last year with Gracie. That year was filled with good times, bad times and some very scary times. But I can say that June, July and August- the summer months were filled with good memories and good times. These were the months that we got our happy little girl back. Most of the beautiful pictures and videos we have were taken during this time. Gracie was receiving chemo and it was working. She was laughing, talking, walking… I mean running ☺ and she was acting like a 1 year old again! We were able to be home in between treatments and everything was going as planned. We were doing fun things as a family and spent so much time in the Adirondacks, trying to enjoy family, friends and life that summer.
One of our first trips that summer was soon after Gracie was diagnosed and discharged from the hospital. We were asked to visit a friends camp at Piseco Lake. Everything was very new to me and I was a very neurotic mom (more so than now) at that point. I was afraid of everything that could possibly make Gracie sick- germs, bugs, not being near a hospital, etc. With some convincing and a lot of hand sanitizer we went. I was so nervous about everything, but it went away when we got there and were welcomed by friends like everything was normal. At this point our life had changed, we were not a normal or typical family anymore- we were a family with cancer. But being around friends and family takes that away and made me and my family feel so much better and normal. Geoff and Luke took off on a boat with the boys and Gracie and I stayed back with the girls. I thought she would be tired and would love to go on a walk, but she did not want that! She wanted to be free and crawl/walk/explore the camp. It was an awesome sight to see after what she had just been though and diagnosed with. We left Piseco and headed home that night. I will never forget our drive home. Both Luke and Gracie were tired and a little cranky. I put in a CD and Justin Timberlake’s “Baby, Baby” song came on. Geoff and I sang as silly and loud as we could- Gracie and Luke were hysterically laughing at us and wanted more! I will never forget that moment, those smiles, those laughs <3. Our second trip that summer was to Daggett Lake near Lake George. My brother came home from Hawaii to spend some time with us. So Uncle Ken, Mimi, Grandpa, and all 4 of us headed up to Daggett Lake for a week. The camp we stayed at was perfect. It was perfect in the way that it offered tons of family time. This camp had no cable TV, no phone- just time to talk and do things with our family. We hiked, took walks, swam, had fires, laughed, ate and played with the kids. I remember Gracie running around the living room in the camp. She would run circles around the coffee table, keeping us busy and entertained. We also headed in to Lake George for an evening. Walked around, shopped, watched the boats, listened to music and headed out to a nice Italian restaurant. We were lucky enough to get a table on the balcony of the restaurant. I have a great memory of Gracie sitting in the high chair eating, laughing and entertaining us all, then getting down and watching and waving to people from the balcony. At night all of us would always be gathered in the living room and even though this camp did not have cable TV it did have a small TV with a VCR and some movies we could watch. I find it ironic that my kids chose to watch Lion King over and over and over… “Hakuna Matata, It means no worries for the rest of your days…”. These are some pretty important words that we tried to live by at that time and need to be reminded of every so often. We all left that vacation singing that song for quite some time! Our last vacation of the summer was a long weekend up to a friends camp at 4th Lake in Old Forge. Our families joined us at this beautiful place and we settled in the first day on the dock, enjoying the sun, company and watching the 5 cousins together. The next day Hurricane Irene hit and we were confined to the indoors, but we still had fun! Again, family time to talk, play games and interact together always makes the best memories. The next day you wouldn’t have even known that a storm had hit. The lake was so calm and peaceful- not even a ripple in the lake. I know that Geoff and Gracie had some precious together time early in the morning at this beautiful place. I have so many memories of Gracie at this camp- on the dock, climbing the stairs, walking on the porch and stopping to kiss the person on the other side of the window that was waving to her! It is such a beautiful place with such great memories we continue to head back each year, but without our Gracie…. While we were there we took a family photo of the Lawton’s because all of us were there. Cooper may not have physically been there, but if you ever see the picture and look at Aunt Kara you know he was there and arriving soon! It’s a picture we’ll never be able to recreate or take again when they’re older, but I’m so thankful we had the opportunity to take it. It’s funny how we didn’t know what was coming in the months after summer and still chose to have these great trips and memories with our families. We all know what happened next when September came. So on that note I want to leave this blog feeling happy, remembering good times and reminding everyone how great and special the summer can be with your family. With school ending very soon and summer almost here please take the time this summer to do the things you love to do with your family- camping, swimming, bike riding, boating, hiking, going to the beach, parties, enjoying the sun, laughing, playing…. Making memories with your loved ones. I am planning on doing all of this- so you may not see another blog until September! Have a wonderful and safe summer ☺

My Speech from the May 10, 2014 Golf tournament:
If you follow our website or have attended any of our functions in the past then you know our foundation has 3 goals. All of which are to help families with children battling cancer or a life threatening illness.
Our first goal is to provide gifts that will help make memories, our 2nd goal is to provide monetary donations or financial assistance to families in need. And our 3rd goal has always been to build a room in Gracie’s name at the Ronald McDonald House of Albany.
The 1st 2 are easy to do. We can give money to those requesting and in need and as a board we are able to run our making memories program, but the 3rd one is a bit more challenging. Challenging because we needed to raise money for a room, we needed people to understand why there was a need for more space at Ronald McDonald House and quite honestly we needed the Ronald McDonald House to begin building a new house. We can’t just go around building and adding on rooms at the current RMH!
Luckily for us the RMH also had a plan to expand. They were turning away hundreds of families a year because there were no rooms available. Shortly after Gracie passed the RMH began a campaign to expand the house called “more room for love”, as the RMH is often referred to as “the house that love built” So RMH acquired and began plans to renovate a 3rd house next door to them. This house will hold 10 additional bedrooms and many other features! So when this happened we were thrilled and we immediately let them know we wanted to sponsor or create a room in this expansion in Gracie’s name. They accepted and we needed to raise $25,000 to do this. Because of you- we did!
Today I am happy to announce that this goal, our dream is about to come true! The more room for love campaign is almost completed. And in this completed project will be a bedroom that Amazing Gracie’s Gift sponsored and helped create. This is very special to us in that the RMH was a home away from home for us when Gracie was sick and we will always have a connection with them in our hearts, and now Gracie’s name will live on forever in the house that love built. We know this room, this space will bring many, many families a place to sleep, a place to talk to their loved ones, a place outside of the hospital, but close enough if needed, a place to try and relax, a place that feels like home. This is a place that will provide comfort, hope, love and support for many families with ill children.
We are very happy to announce that because of you, on June 30, 2014 the RMH “more room for love” house will open its doors and our space will be available for families to stay in and we have all of you to thank for it.
We have pictures of construction that has been going on at the house, as well as pictures of our room (thanks to my dad). The room will be decorated in an Adirondack theme and we will provide updated photos when the room is totally completed. I hope you’ll take some time to look at these pictures today. It has been an amazing experience to watch this house come together. In the slideshow you will see lots of construction workers who donate their time whenever they can- they’re amazing. And the staff at the current RMH keeps the house running and families comforted while also responsible for overseeing construction of this new addition. This is a huge responsibility and task and they are doing an amazing job with this.
This is really happening and it really is a dream for Geoff and I to share this with all of you. Because of you this is happening. You all support us, motivate us and give us the drive to keep going and keep helping – Thank you!

Gracie would be 4 years old tomorrow April 14th. What should we be doing? Right now I should be planning a little girl birthday party for her. Perhaps a princess party? Doc McStuffins? Minnie Mouse? Maybe she’d like soccer or TMNT like her big brother? Geoff and I should be picking out the perfect gift for our 4-year-old little girl. What would that be? The hard part is I don’t have answers for these questions.
Instead of knowing and planning our little girl’s 4th birthday party with friends and family, I’ve got to figure out how to plan her birthday without her here. Many of you may ask “why do anything if it’s so hard on you”? But Gracie has a big brother who has already asked what we are going to do to celebrate her birthday. It was also a pretty big day in our lives. The day our little girl was born. Our family will always know this day and we will always try to remember her on this day the way we think she would want to be remembered.
On her second birthday we had a parade and party here at our house. That was difficult. It was a beautiful celebration, but it was hard to hold back tears when singing to her and celebrating without her here, without seeing that 2 year old face.
Her 3rd birthday was nice. We knew we couldn’t have a party here because it was just too hard. Instead we went to the Albany Ronald McDonald House and cooked in her honor. No cake, no singing, no parties. Just doing something that gives back in her name. It was perfect.
Her 4th birthday is here. And quite honestly it snuck up on us. Just a few days ago all the questions of how to celebrate came to mind. This year I’m really missing Gracie and the thought of what she would be doing at 4 years old is really getting to me. I’d prefer to celebrate by crawling under a blanket, but like I said I’ve got a family that wants to know how we will celebrate her birthday and like I said before it is an important day~ it’s the day we brought Gracie into this world. It may not be a “happy” birthday, but it is still her birthday. It’s just a struggle to know how to celebrate when your child is deceased.
When loved ones pass away, the holidays that used to bring so much love and happiness- Easter, Christmas, birthdays- leave you feeling a little lost and with an empty feeling. We learn to manage our feelings and pain on these days to show everyone we are strong and starting to live life without feeling so sad. Each passing year it is easier to do this, but the pain is still there.
So this year on Gracie’s birthday I think we will go to her site, spend some time there, bring some pretty flowers, release a few balloons, eat her favorite candy bar- crunch bars in her memory. We will imagine and dream about what Gracie would be doing on this day…. I will think of her wearing a pretty birthday dress, smiling, laughing, blowing out 4 candles on her cake, playing, running, hugging us, kissing us, happy, healthy and cancer free. I can only hope these thoughts will come alive in the most vivid dream of her that I can possibly have. Love you Gracie! I can’t believe you’re 4 years old. Happy 4th birthday my baby girl <3.

Gracie was diagnosed with a very rare form of cancer. If you look it up on Google it says “Malignant rhabdoid tumor (MRT) is one of the most aggressive and lethal malignancies in pediatric oncology”. And unfortunately as much as I try to not focus on the “rareness” of this it’s very hard to do. When you’re in the business of rarity you don’t shrug things off and are most often in a state of worry when things just aren’t right. My friends and family can vouch for this! Our son, Luke caught the stomach bug for the 4th time this year. Each time my anxiety growing and with this last time a call to the doctor.

Gracie and what happened to Gracie is always on my mind. When I’m alone, cooking, driving or reading a book I sometimes realize I’m not focused on anything, nor seeing or hearing what’s in front of me. It’s in these moments that I’m fully thinking of Gracie. Her smile, her touch, her cuddles can quickly turn into the loss, the horrific disease that took over her body, and the emptiness that fills my heart. It’s moments like these that my body tightens and I feel powerless. These moments come and go and have changed the way I look at the world and how I deal with certain situations.

It changes the way I deal with and analyze any sickness or symptoms in my family, friends, and especially Luke. I have a hard time saying “It’s nothing, it’s just the bug”. For weeks I knew there was something wrong with Gracie, but we all kept thinking she’d get over it. And when she didn’t and her diagnosis came we were introduced to the business of rarity.

So when Luke has “the bug” and it’s centered around his belly and we have to have blood tests, x-rays, and ultrasounds- I panic inside. I feel his belly for masses, ask the dr. privately if there’s something really wrong… all along thinking something rare and really bad already happened to my family. But knowing this does not make us immune from another rare thing happening again… even though the dr.’s at CHOP biopsied Gracie’s tumor and her cancer was NOT genetic (good news), it doesn’t take the worry away. I hate thinking this way. But I know it will always be there. I know I have to be reassured and I have to go with my gut feeling to get things checked out.

Before Gracie got sick, I didn’t realize how many families were going through what we were going through. It’s strange how something like this was so far away from us our whole lives and now it’s everywhere. With the foundation we have started we hear these stories daily and try to help families in need. It will always be around us and we will be here to help for as long as we can.

This rare business has also led me to something that’s very hard to do. One of the hardest things in the world is asking people for money. I’m sure you hate it and I do too. It’s major fundraiser time for the Golf Tourney and the sponsor, donation and player letters have gone out to contacts, as will lots of facebook notifications. I ask you to give, I ask your friends to give, I ask you to come to the golf tourney, dinner, auctions, like our facebook page, buy our chocolate bunnies, and don’t forget about the Night Of Grace…..the list goes on and on. There is a large part of me that wants to hide when I have to ask all of you to help or donate. It’s hard to put yourself out there and my deceased daughter out there on display, but I do it because it’s the right thing to do. I do it for Gracie, I do it for the other babies, children and their families fighting this battle. It’s just part of the rare business we’re in.

As for Luke, he’s in this rare business too. Not too many children had a sister for a few years and then have to keep growing up without them. He comes out of nowhere on a daily basis with “I wish Gracie didn’t die” or “I miss Gracie” or “Why did Gracie die?”, along with questions about situations he’s starting to remember like “Why couldn’t Gracie go in the pool with us, mom?”. He’s getting to an age where he’s trying to understand more of what’s happened and these questions come at the weirdest times! I’ve just started realizing that Gracie may be on his mind as much as she’s on ours. We were getting ready to go to the doctors about this stomach bug he has and he says “Mom, I hope they don’t have to cut open my belly like they did to Gracie.” Of course I reassured him that was not the case and that was not going to happen, but in this “rare” business were in I was secretly thinking “me too”.

Luke is on the mend and we think it really was a very nasty stomach bug! My anxiety is starting to decrease (thank you family and friends for putting up with me!). Our family will keep moving forward and continue to help others until a cure is found~ and we hope you will help us <3.