Happy summer! I cannot believe that it is August and summer is almost over! I know I’m a teacher and I have 2 months off….but that is far from the truth! Every morning while get ready for the day I think about what I want to write in my blog this month, and then the day begins and there is not one free minute! Life is very busy with a 9 year old, a one year old and running a foundation, as well as continued thoughts of my deceased child. She may not be here physically but she’s always in my heart and on my mind and she also requires and deserves time throughout my day.
So this morning while getting ready I promised myself that I would sit down and write while Ava is sleeping, Luke is busy looking at fidget spinners (lol) and I don’t have to work or have any plans for the day!

So although this summer has been great, it did start out rough. Geoff’s dad and our kids papa passed away Memorial Day weekend after battling cancer. I know what you’re thinking…cancer in our family again. I hate that word. I hate this disease. I hate that cancer took our daughter and now our children’s Papa. Plain and simple- Cancer sucks. It’s been a summer of changes, trying to navigate and figure out this world without this man in our lives. I will say my husband’s family is very strong and positive, but things will never be the same and are a little different without Ken around. Ken was a great father, Papa, and friend. He was an honest, hard-working man that would help anyone at the drop of a hat. I am grateful that he has instilled his morals and values into his family, my husband and his grandkids. For this I am forever grateful to him.

Ken loved spending time with his family and that’s just what we did and are doing this summer. We spent some much needed time this summer doing something very simple- camping as a family. We spent a month camping at Brennan Beach on Lake Ontario for the month of July. It was relaxing, fun and we made great memories as a family and with our friends. The simplicity of it made it that much more memorable… campfires, swimming, beach, pool, fishing, baseball, corn hole, sea glass hunting, family/friend dinners, conversations with no tv, laughs, laughs and more laughs. It was a month full of memories that will last a lifetime. Each night we would walk down to the beach to watch the sunset (BTW Lake Ontario has THE most beautiful sunsets) and Luke would go off sea glass hunting and I would be chasing down Ava as she wanted to run around the beach. One night this woman was watching us and she came up to me and commented on how beautiful Ava’s big blue eyes were. Then she asked the dreaded question….How many kids do you have? I’m ashamed for saying dreaded. I really don’t mind the question, but it always makes me stop and think and tear up just a little. I’m proud to say I have 3 kids, I just wish all three were running around. I hesitantly said 3 kids knowing I was going to have to explain where the 3rd one was and she quickly caught on to my hesitation and laughed thinking I was burnt out with 3 children. That’s when the conversation changes. I quickly said my middle child had passed away with tears under my sunglasses. She immediately responded with “Im so sorry” and went on to ask how old my kids were. I started in chronological order and when I got to Gracie I stumbled, luckily my friend was standing there and said Gracie would be 7 and helped me finish the conversation. Seven… I couldn’t get that out of my mind. I haven’t seen her since she was 21 months old. How could my baby be seven? And how amazing is it that my friends can step in and finish a conversation for me with accurate facts of my daughter after she’s been gone for so long?! Almost every night we watched that sunset, almost every night someone commented on Ava’s eyes and every night I remembered my other blue-eyed baby girl. When it was time for bed each night we would pop in a movie. I have no idea how this happened, as I haven’t seen this movie around in quite some time, but Lion King was the movie chosen each night. Lion King was Gracie’s favorite movie and brings back some awesome memories of when we went camping with her at Daggett Lake- Rosie’s Love. Gracie loved that movie and loved the songs “I just can’t wait to be King” and “Hakuna Matata”. She would dance around to Hakuna Matata all the time. Each night while putting Ava to bed I would sit and listen to those words… “It means No Worries for the rest of your days… it’s a problem free, philosophy.. hakuna matata” and promised myself to live up to those words each day on our vacation and I think we did! One night a bunch of the kids were in the camper with us when it was on and they were all singing it and I couldn’t stop smiling as it was so wonderful to have such happiness around. I was very thankful for this great month.

July was a wonderful month…camping with friends, family wedding, spending time with cousins, and planning a memory making trip for a local family whose 1 year old daughter is on palliative chemo. It was such an honor to be able to help this family plan and carry out a trip with their family that created memories that will last a lifetime. The whole time we were planning this trip I thought of our Gracie and about how this is exactly why and what we started the foundation for. I hate the reason why we do what we do and that other families have to go through what we went through, but am happy that we can do this for others because of this foundation and its support. Many, many prayers, positive thoughts and wishes for miracles for this family. Hakuna Matata to them <3

Overall I’m sad to see July go, but August brought a very important, humbling day for our family and the foundation. Amazing Gracie’s Gift went out to Albany for our annual backpack event. We went to Albany Med and to the Ronald McDonald House to bring school supplies to patients and their family members so that mom and dad could check one thing off the “to do” list and not worry about how and when they were going to get this chore done while their child and family were going through some tough times. We started out at the clinic that Gracie visited so many times before she passed away. When you spend the majority of your child’s life in certain places they begin to be like your second home. When we walked into clinic with our supplies I immediately felt a little closer to Gracie and also felt at home. It’s been many years since we were there with Gracie, but to me things have not changed. There are still kids running around with IV poles, nurses getting vitals, the “payment” window, the playroom, parents watching their children play and waiting anxiously for their child’s levels and report from the doctor, doctors with that white sheet in their hands with their patients levels on them, social workers playing with the kids and talking to the parents…it all brings back so many memories. The people who work in clinic are angels. They are full of energy and send out positive vibes to all who are there. They are simply amazing. While helping kids pick and fill their backpack I was very “in tune” to what was going on around me. I could tell which families were getting good news and were going home feeling positive and I could tell which families were going to or have gotten bad news. Unfortunately we have been there and done that and even though it was 5 years ago I still know exactly what’s going on by just being there and watching. I left the hospital with tears as one mom told me her wish is to have her child be pain free and as I watched another family wait for their child’s report and scan results, knowing the uneasiness and anxiety that comes with that appointment.

After we left the hospital we headed to The Ronald McDonald House to host another Backpack Event. The minute you walk in this house you feel the love! It is loud, happy, full of kids, toys, activities, food and tons of support, love and laughter. If you need to smile head to The Ronald House in Albany and volunteer some time. They are always so appreciative and friendly. Here I met some wonderful families and kids who are going through some pretty rough times with smiles on their faces. I had the opportunity to sit down with one girl at the house after everyone left and hear her story and just talk with her. She is 18 years old and is dying. She has cancer. She is soft spoken, beautiful, strong, very humble and so very appreciative of everything around her. She told me her story and asked me to talk about Gracie. When she left I looked at Debbie, cried and said I couldn’t believe this was happening. I also couldn’t believe that roles were reversed at one time. We were that family sitting there almost 6 years ago about to lose our daughter. Sometimes it doesn’t seem like it was real.

On our way home from the backpack events I sat in the back, was quiet and had tears in my eyes the whole time. Happy tears and sad tears. Sad tears over the diagnosis of some of the patients I met, sad to know some parents were getting bad news that day, sad that the girl I met is dying, sad that Gracie isn’t here, sad that we were once that family, sad that cancer even exists, and sad that this was the first year that Ken was not there to be at one of his favorite events. But I also had happy tears. Happy tears that we were able to put smiles on so many kids faces this day, happy to hear kids laughing, happy to be able to go and support these families and kids, happy that our kids-Luke, Lawton and David were so grown up, mature, well behaved and helpful at the RMH, happy we there and doing this event in Gracie’s memory and honor, happy we were doing this in memory of Ken too as he loved this day, happy we’ve had a great summer, happy we have more memories to make this summer, happy a new niece will be added to the family this month and happy as I thought of the words to hakuna matata…. “It means no worries for the rest of your days”…. As that is what I witnessed from some wonderful families in Albany.

I know this was a long, rambling blog, but in my defense I haven’t written in a long time! Enjoy the rest of your summer, make some great memories, put smiles on others faces, support Amazing Gracie’s Gift and childhood cancer month in September and live the rest of your summer with no worries! Please help me wish Hakuna Matata and love to all of our families!
Hakunan Matata to all of you!!

Welcome to the 6th Annual Amazing Gracie’s Golf Scramble! Over the past 6 years we’ve experienced just about every kind of weather you can imagine at our golf tournament. We’ve had sun, clouds, rain, fog, wind, and even snow, it’s also been pretty cold, super hot, and also very pleasant. Today we were faced with not the greatest weather conditions, but really no matter what the weather has been the participants always have smiles on their faces and love in their heart for our foundation.

I can’t believe what this foundation and all of our supporters have helped us accomplish in the past 6 years, it’s absolutely amazing:

• First let me start with today. I’m not sure if you realize how amazing today has been: Today we had over 160 golfers, over 20 volunteers, over 100 donations from some amazing people and businesses, and sponsorships totaling over $11,000 before the tournament even began!
• Because of our increase in sponsorships, donations and grants over these 6 years we have now expanded 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 300 families through our Easter and Spring basket events at Albany Med and Golisano, our backpack event at the RMH, countless gifts and volunteer hours to the hospitals and RMH and by individual financial assistance or memory making vacations.
  Not only have we accomplished so much, but along the way I’ve learned a few things on our golf day. In our 6 years of golfing I’ve realized
• Just how fun it is to drive a golf cart! Who doesn’t love zipping around in a little white box with no speed limit, no lanes to drive in and the wind blowing in your face. Especially when you’re cruising along with your friends, a cold drink and the sun in your face. Which brings me to my next point…
• Each year I’ve also started to realize why men golf so often. It is truly the best kept men’s secret there is. They might act like it’s no fun and they have to go golfing again for this or that, but once I got out on the course I realized what a blast it is! Who wouldn’t want to have a day all to yourself with your friends, a cold drink and lots of laughs? Sorry guys, the secret is out!
• 6 years later my team has finally figured out that we should be golfing with a foursome and more than 1 set of golf clubs and we should prob. at least try to golf all 18 holes! If you ever get stuck behind us or see us out on the course you will most likely get a good laugh from us, but that’s what today is about, right?
• But most importantly I loved seeing all of your smiles, hearing the laughter and watching the great interactions of all the people in the tournament that have traveled from near and far.

Over the years I have also realized that 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 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.
Each year I state our motto and I ask you to be amazing. So without further ado…

• Be Amazing like Ronnie Pizer and his family. His family of 7 was rocked to the core when last year on May 27th Ronnie was diagnosed with a Wilms tumor in his kidney. The everyday normalcy of life took a turn with this diagnosis. Ronnie and his family were going to have to spend many, many months traveling back and forth to the hospital for Ronnie to receive 19 rounds of chemotherapy and surgery. As you can imagine this was a very scary time for the family with lots of ups and downs, but today we are happy to report that Ronnie is in remission and is Cancer Free! Ronnie’s family can you please stand up.
• Be Amazing like Lilliana. Lilliana was diagnosed May 31st last year with T-cell acute lymphoblastic leukemia. With this diagnosis another family was shaken to the core and life was about to change for them. But Lilliana and her mom were ready for the fight. Through all of the tears, procedures, hospital visits and stays Lilliana has been very brave and Lilliana’s brave mommy has been by her side through it all. They also have traveled the long road back and forth many many times to Syracuse. Lilliana has had so many chemo treatments we’ve lost count, she has had 9 hospital stays over the past year, and has had many ups and downs. Lilliana is an amazingly strong little girl that never gives up and neither does her mom. Today we are happy to report that Lilliana is in remission but her treatments will continue and hopefully end in 2018. So let’s keep Lilliana in our thoughts and prayers… Lilliana and Jaime can you please stand up.
  • Because of all of you Amazing Gracie’s Gift has been able to help support both of these families! Ronnie’s family just went on a memory making trip in February and Lilliana will be taking her memory making trip this summer.

I also want to remember some of our other families and places too:

• 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 Garrett who is a few months old and just had a life saving liver transplant.
• Be Amazing like Amelia who is 3 ½ years old and has been diagnosed with brain cancer.
• Be Amazing like 5 year old Jackson who has had some major GI surgeries and has been enduring pain for quite some time.
• Be Amazing like Kelsey, who is 2 ½ years old and is fighting cancer.
• Be Amazing like Landon who is 12 years old and has heart failure.
• 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 six years. Let’s keep it going and make it to 10 years!

Dear Birthday Girl,
Happy 7th birthday, Gracie! 2,553 days ago you were born. It was a quiet, but amazing day. You were a planned section and everything went smooth and easy. I went into the hospital around 9am and had you in my arms by 12:30 pm. I felt great and you were just perfect. You arrived with dark brown hair that was already styled into a Mohawk, big blue eyes and the most perfect lips. I remember that day like it was yesterday and on your 7th birthday I imagined myself telling you your “birth” story. But plans changed and instead of telling you face to face I now must write my thoughts down and hope you hear them. I’m thinking you do as I’ve had lots of signs from you lately, signs that I didn’t realize or didn’t pay attention to. Signs that were meant to remind me to slow down, don’t be so grumpy and enjoy life a little more. This often happens as April approaches and your birthday draws near. I avoid thinking about your birthday because it makes me sad to know you’re not here to celebrate it with us. There isn’t a day that goes by that I don’t think of you, but lately I haven’t truly paid attention to your signs. I see or hear them and I break down for a few minutes and force myself to move on quickly because there is “too much to do”.

The last few weeks have been busy at work, at home and for the foundation, juggling the kids school, daycare, and sports schedules, keeping up the housework, flooding in the basement, report cards, lesson plans, progress notes, CSE meetings, cleaning and packing my classroom, the huge undertaking of planning and getting donations for the golf tourney, board meetings, Easter/Spring Event planning, buying and organizing for 2 hospitals, shopping and packing for our trip… I was drowning! Throughout all of this you were sending me little signs – bunnies, bunnies and more bunnies-lol, and other little things too that I now realized went unnoticed. I’m ashamed to say that when I saw or heard them, I brushed it aside because there was “too much to do”.

Gracie, why do so many of us in this world get so bogged down with so many things that we forget what’s important? I can only hope that wherever you are this doesn’t happen. I am guilty of taking on too much sometimes. Look at all the stuff I listed above, do you see anywhere “spend time with kids, play with kids, talk to kids, eat dinner at the table with the family”? It seems like those should have been first on my list of “to do” things and they weren’t. And I’m sorry for that. In this life we keep doing more and more and forget what’s most important, I of all people should know that! But it’s so easy to get carried away with things and sometimes it’s your signs that bring me back down to reality.

It was this past weekend at our Albany Med Easter Event that everything hit me. We walked in and first thing I saw was a picture of you and the second thing I saw was one of your favorite nurses, Tina. I was totally surprised, as I didn’t know she would be there. We hugged and as I hugged her, your picture was staring at me, and that’s when it all hit. Take a deep breath and SLOW DOWN. When we were in the hospital there was lots of time. Time went by slow, but it was so valuable. We got to play, hold you, sleep with you, cuddle, read to you, sing to you and so much more! So much time I was grateful for, even though I wish there was more.

As the event started and the kids were arriving I thought more about how trivial my list of things to do was and how your signs and this event was probably your way of saying slow down and enjoy your family because time goes by too fast and you just never know when your last time together will be.

It has been 1,916 days since I last held you. That’s 5 years, 2 months and 27 days since you were last in my arms. I promise you for your birthday that I will slow down, make memories, and enjoy life and our family. This will be my gift to you and to your brother and sister.

On your birthday we will be traveling. I will be patient, I will laugh, I will go with the flow. I will think of you and smile with every mile we travel, every laugh I hear, every ocean wave I see, every time the wind blows and every time I look into your brother and sister’s eyes. Gracie, your signs have been seen and heard. I love you. I miss you. I wish you the happiest 7th birthday ever. Happy Birthday, baby girl.

Love,
Mom

To all our supporters, Happy Easter! May you surround yourself with loved ones, make memories and remember to slow down. The page I was writing on in my journal had this quote and I thought it was perfect to share with you and to remember as we all feel the rush of life and sometimes forget what’s most important.
“Not that we deserve it, not that we can earn it, but that we know how precious and valuable a gift is. That’s what makes grace so amazing.”

Gracie. Five years without her. How is that possible?

January is a hard month full of flashbacks. It was 5 years ago that things got really bad. Gracie was very sick and as much as I hate to say it, it was getting scary and a lot for me to handle. I was the parent who pretended everything was ok, but inside I was falling apart. I knew what was coming and I didn’t want to admit it or face it. When Gracie was first diagnosed I spent every minute of the day and night with her. In the hospital, at home, clinic visits… you name it I was there. But her last few months were so scary that I was afraid to be alone with her at night for fear something would happen. So I did day duty and Geoff took night duty every night while I went to the RMH to sleep and be ready for what the next day would bring. I say I went to the RMH to sleep, but that’s not what would actually happen. Each night I would leave the hospital and head to the house and as soon as I would get to the house I would have a panic attack that I left and that something was going to go wrong. I would call Geoff and he would reassure me that everything was OK. I would then walk to the kitchen and try to eat something, but two bites in and that anxiety would hit again. I would head back to our bedroom at the house and call Geoff again. Once I knew everything was ok I’d watch some TV for a while, hoping to fall asleep, but every night my eyes would wander to the same place. The bed post on the corner of the bed. On that bed post hung Gracie’s little pink sweatshirt. She didn’t need it in the hospital and the room was so small we would keep it and lots of other belongings in our room at the RMH until she could leave the hospital. Every night I’d look at that little pink sweatshirt and tear up. What if she dies and there is no one to fill the little pink sweatshirt? What will I do if she’s not here to wear it? The amount of pain and tears looking at that sweatshirt and thinking about the future and her not being here to wear it was unbearable. I would finally calm myself down and convince myself that everything was going to be ok and to not think about it.

This is exactly what happens and what I have to tell myself every time I start thinking about Gracie’s death. Most of the time I force myself to think about the good times, the great memories and the fact that I was lucky enough to be Gracie’s mom and enjoy the little time I had with her. But there are times when her death and some of the hard, terrible memories of suffering and sadness arise. January 17th is one of those days. As much as I want to force myself to be happy and remember all the good times there has to be a time when I let myself think about what happened and be sad. I can’t hold that in forever. I am truly thankful for all the support and love that surrounded my family that day, but the fact that she died that day tends to overshadow that. To this day I am still in shock that my baby died. To this day I still think of that little pink sweatshirt hanging by it’s hood on the bedpost and all those scary thoughts and feelings I was having. I still ask why. I still cry. I still don’t understand how this could happen. I still think of Gracie every minute of every day. And I still have that little pink sweatshirt hanging up on our coat rack at home. Right now it is buried under all of our coats, but every spring when we slowly put our winter coats away it’s still there. I couldn’t bare to put that sweatshirt away in the past 5 years and to be honest it will probably be there for the next 5 years. As much pain looking at that little pink sweatshirt on the bed post at RMH brought me 5 years ago, it now brings me a sense of comfort. A sense that she is still here with us and that she may not be here to fill it with her little body, but it is instead a reminder of her love and spirit that fill us each day and remain in our home.

The saying “time heals all wounds” should never be associated with someone who has lost a child. It has been 5 years without Gracie in my world and there will never be a time that I am still not in disbelief about her death. Five years later and I go numb when I think about what happened. Sometimes it’s the only way I get through it. Five years later and there hasn’t been and will never be a day that I don’t yearn to hold my Gracie again.

Gracie. It’s January 17th again. The day you died. I miss you, I love you and I will always keep your little pink sweatshirt hanging in our home.

Time Flies
It’s been awhile since I’ve written in my blog! It’s been on my mind, but life has been busy and the days are going by so fast… I swore Thanksgiving was yesterday and now it’s almost Christmas! Last time I wrote here was a few weeks before my due date. I told you all that I would let you know when our baby arrives and what we had. Well here we are 4 ½ months later and I’m just getting around to it! On August 1st we welcomed a baby GIRL into this world. Ava Grace arrived early afternoon on a Monday, a healthy baby weighing 8lbs. 12 oz.! As most of you know we did not know what we were having and it was totally worth the wait. It’s already such a magical moment watching a new life enter the world and when they announced it was a girl it made it even better. It was the best, happiest surprise ever!

Tending to our new baby and family is obviously the reason I haven’t had a chance to write in a while. Ava is a great baby. She brings us a lot of joy. She has a smile that will melt your heart, big blue eyes, and hair that will just make you laugh. She actually looks just like her sister did when she was a newborn. I love having a baby in the house- the cuddles, the smiles, the belly laughs, the cute clothes…I could go on and on, but as we all know life isn’t picture perfect. It’s been an adjustment and of course there are some challenges that come with a newborn….feeding schedule, sleeping schedule, fussiness, spit-up, lack of sleep, losing the baby weight, the fear that I’m going to mess up somehow or the constant concern that I’m just not doing it right at all. I’m pretty sure all moms go through those changes and challenges once having a child, but for our family it’s a little bit different.

There are more challenges that present themselves when you have a new baby after you lost a child. I am definitely more paranoid about EVERYTHING! Every little ache or pain Luke or Ava has I am afraid they have cancer, or every time Luke won’t eat his vegetables or eats too much microwave popcorn, I am afraid he will get some other disease. I worry that there will be something wrong with the baby, and I fear that I am not strong enough to go through such heartache again so soon. I fear that the baby will have something wrong with her, or as happened with Gracie, she’ll be perfect and normal and then one day that will all change. Even though we’ve been told Gracie’s cancer was not genetic I still find myself feeling Ava’s belly and wondering if any sign of distress is cancer. At first I thought I was nuts and called the counselor we visited for a year after Gracie passed to see if I was truly losing it. She reassured me that these feelings are normal and that Ava is probably going to visit the dr. more than most babies because of what we went through. I realized that I’m not alone and I’m not the only one feeling this way. Luke has also expressed his concern of the same feelings. I’ve been able to reassure him that everything will be ok and that we all hope that doesn’t happen to Ava or him or any child. We can’t live in fear all the time, but can expect it to pop up every now and again. It does remind us to live life to the fullest and enjoy every moment with those we love.

I’ve also heard people use the term “the replacement child”. Ava is not my replacement child! It’s such a cruel term, that suggests a parent wipes out the agonizing grief of the death of one child with the birth of another. For our family that is not true. I can say that losing a child is like losing part of yourself. You learn to live with it but you never get over it. But Ava did not replace Gracie, she is a distinct member of our family. She is her own person. She is our 2nd daughter, another sister to Luke, the 3rd granddaughter and niece on one side and the 2nd granddaughter and niece on the other side. Yes I’ve called Ava, Gracie. She looks like her and acts like her, but they are sisters and that is going to happen. We wouldn’t think it was weird or not talk about the resemblance or confuse names if Gracie was still here so it shouldn’t be uncomfortable or weird to talk about it with Gracie not here. We need to remember that they are sisters, but they are not the same person. Gracie has her life story and Ava will have hers.

I also think a lot about the fact that Ava will never know Gracie. It hurts to think Gracie will be like a stranger to Ava and there won’t ever be any pictures of Luke, Ava and Gracie together. Luckily we talk and share pictures as a family about Gracie a lot. What I can do is try to make sure Ava knows all about Gracie and how she loved to laugh and have fun, and so much more.

The challenges we face also make me a better parent. Losing Gracie has changed my approach to parenting in a variety of ways. I am so much more willing to stop and do the little things like cuddle or read books or play games. I am much more patient and less rushed. I am trying to soak up every bit of Luke and Ava’s childhood and enjoying the milestones that both of my kids meet at their age.

Throughout all of these changes and challenges, I am noticing that time really does fly. It’s been almost 6 months since I wrote a blog, Thanksgiving came and went, one day I had a newborn and now she’s 4 ½ months old, Luke was just starting kindergarten and now he’s a 3rd grader, and it’s been 4 years since I’ve spent a Christmas with Gracie… Where did that time go? As we approach the holidays remember how fast they will go by and take time to be with your family, friends and loved ones, making memories that you will look back on. Remember time flies, but the memories you make during that time are amazing, beautiful gifts to be cherished.

This year I’m sure that our gift was handpicked from heaven by Gracie… Merry Christmas!

September. Childhood Cancer Awareness month. I sat here and looked at those words for a long time thinking “what do I want people to know about childhood cancer?” As I think about this question I think about my family’s experience and our story with cancer, as well as so many of the families we help that are facing this diagnosis. So this year I decided to give you the grueling statistics and facts again -because they are important, but I’ve realized they are also easily accessible for people to find and educate themselves on. If you want to know the facts on childhood cancer you can Google them anytime. But what you cannot Google is the impact or feelings of parents and their families who have or had a child with cancer. So for that reason I will share the facts with you at the end of this blog and will take some time this September to share a compiled list of what I want you to know about how childhood cancer affects the parents and/or family.

1. First let’s state the obvious: childhood cancer sucks. It is unfair, it is wrong, it is horrific. No child should ever have to go through this diagnosis and no parents should ever have to watch their child go through this.
2. Most parents with a child with cancer is not as strong as you think. I know that I’m not as strong as you think I am. As a parent, cancer is one of the worst diagnosis you can hear for your child. The word “cancer” sends a parent into panic mode. It is unknown territory, something no one wants to enter. I can’t tell you how many times someone has said to me “I don’t know how you did (or do) it, I just couldn’t” or “you’re so strong and brave, I couldn’t handle it.” Yes you could. But just like me and everyone else you don’t want to. When your child is sick you step up to the plate and take care of them. There is no other choice. You have to be strong and brave because they need you to, not because you want to. Just because I keep my composure doesn’t mean that I don’t break down and cry. I do so most times when I’m alone or in my car. I do hide my pain in front of my children and family at times because I needed them to draw strength from me- the person who loves them more than anything or anyone. But you should know that as many times that I can stay strong, there are times when my family and children have and need to see me sad because sometimes I need to draw strength from them. We are a team and our love and strength for each other gets us through everyday.
3. A family with a child with cancer is not privileged. It brings me great sadness when I hear families we help through the foundation worry about taking “too much” because of what others say or think about receiving some amazing experiences or gifts from the community. I’ve heard people talk about how lucky we or these families are to receive such donations. Lucky? Really? My family and I’m sure every family we’ve helped would trade every trip, every cent, every gift to have our children never have to go through this. Most have no idea how a parent with a child with cancer feels and we would never wish that upon our worst enemy. The words “your child has cancer” will never sink in. Which leads me to #4.
4. We are not the same we once were. I cannot say I’m the same person I was before. I am forever changed and look at life in a very different way than before Gracie’s diagnosis. Life and all it’s moments become more fragile and precious. There is no judging, for you truly don’t know what anyone is dealing with unless you walk in their shoes. Even though a parent is forever changed we still need our friends to make us laugh, to be there when we cry and we still want to be there for them in return. Because after all, we are still human.
5. Childhood cancer is not all smiles and fun. On social media we often see pictures of bald kids receiving treatments with smiles on their faces. We even see kids who don’t lose their hair and we think “wow they must be ok and doing great”. They might be, but I guarantee you that behind those smiles there is a different story. I want you to know that behind those smiles (which can be hard to catch) are tears from surgeries, accesses to ports, procedures, anesthesia, chemo treatments, needle pokes, blood transfusions and so much more that can lead to a very sick child and very worrisome parents. It saddens me to think this was what Gracie knew her life as. I often wonder if she thought this was a normal life? Behind those kids, the pictures you don’t see too often of are the parents. The parents now face each day with Dr. reports, hospital and/or clinic visits, lists of drugs and the side effects they cause that are being given to their child, blood levels, potassium levels, WBC and levels and acronyms of so many different things you never knew about. The questions are endless for a parent- Does the child have a fever? an infection? Should they be around other kids for risk of getting sick? Can they swim with their port? Can they go to school? As a parent your life is now filled with worry- each and every minute while your child is receiving treatment. So although our children and ourselves may look ok in that facebook picture… there is a lot you don’t see or know about us.
6. This September let’s not forget how wrong childhood cancer is in a child. Let us not forget the pain and suffering these children experience from their tumors, surgeries, chemo treatments, and radiation. Let’s not forgot that we lose way too many of these children, and the devastation it brings to their parents, siblings, grandparents, aunts, uncles, friends and community, or the loss to our world of these special children, that I believe would make it a better place.

As promised here are some facts and statistics about childhood cancer:

• Worldwide, every 3 minutes a child is diagnosed with cancer.
• Cancer is the second leading cause of death in children (after accidents). About 1,250 children younger than 15 years old are expected to die from cancer in 2016.
• Childhood cancer causes around 90,000 deaths per year and in high-income countries is the second highest cause of death amongst 5-14 year olds.
• Childhood cancer is often detected too late because parents and health workers do not have sufficient awareness of the warning signs.
• The latest drug developed for childhood cancer in the US was 30 years ago.
• Children/adolescents with cancer suffer as a result of severe and toxic treatments which cause lifelong health issues and challenges.
• The treatment and care of childhood cancer requires a whole interdisciplinary team, to provide not just the medical treatment of the child, but also the psychosocial support for the child and the whole family.

I am so thankful to my friends and community for their ongoing support. Five years later you all continue to amaze Geoff, myself and our foundation board members with your generosity, donations and support! This September we ask you to continue to take this awareness month and do something, take action that will help us find a cure or help a family. Make a donation, come to the Night of Grace, 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 about funds for childhood cancer, 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 (www.amazinggraciesgift.org) under “50 States of Grace” or email me and I can give you ideas.

A big thank you to those who are already taking action and raising awareness. Stay tuned for pictures of our community Going Gold!

We’re having a Rainbow baby.

Last September our family went to the Double H Ranch for a weekend retreat for families who have lost their son or daughter, sister or brother. It was this weekend almost a year ago that I first heard the term “rainbow baby”. We were talking with another family one night who had lost their 2 year old son 11 years ago and they introduced me to their rainbow baby- their 8 year old daughter. I remember asking what a rainbow baby is and they explained that it was a baby born after the loss of a child and that it helps families find hope and faith in the future after suffering such a devastating loss. They explained that parenting after a loss is one of the most exciting, worthwhile, happy, meaningful, things they could do with their lives. When I asked why they call a baby after a loss a rainbow baby they explained to me that a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. This is so true for our family. For those of you who haven’t heard the news yet… we are expecting a baby in 3 weeks! We are beyond excited for the arrival of our 3rd child, our rainbow baby. But although there is much happiness in this news and in the term “rainbow baby” there are also many fears, anxieties and of course questions or concerns from others about our choice of having another baby.

One of the fears and statements we often hear is “ I hope this baby doesn’t get cancer”. Guess what? I do too. But I also hope you don’t get cancer and your child doesn’t get cancer and that no child ever gets cancer again. We have had genetic testing as well as many other tests and the findings were that Gracie’s cancer was “bad luck” (great for us deciding to expand our family, but a tough finding for the reason my child died). Our chances of our children having cancer are the same as yours. But I will say that still scares the crap out of me. If anyone knows that “rare” can happen, it’s us. Even if it’s a 1% chance- it’s still there and it’s scary. I know where my mind is going to wander when this baby gets sick or has a full, hard belly after eating… So when you say “I hope this baby doesn’t get cancer” to me my anxiety increases and it helps solve nothing. I will always pray that my children don’t get cancer and remain healthy in every sense, and I will pray the same for your children.

Another phrase I often hear is “I’m so glad you’re having another child, now you’ll have a family of 4 again!” No, we will now have a family of 5. We are not replacing Gracie. Gracie was here and will always be a part of my family. We will still talk about her and let the baby know they have a sister in heaven. I will now have 3 kids.

So here we are 3 weeks before our lives will change once again. I’m feeling good, tired, emotional, hot, moody and excited- just like any other pregnant woman! We are ready for our little miracle, our rainbow baby because after every storm there is a rainbow of hope……that rainbow of hope will be here August 1st.

If you get a chance please send some thoughts and prayers to our family this day for a healthy delivery and healthy baby! We will share the news and post pics when Gracie’s brother or sister arrives!

My Birthday Girl is Dead

April. The nightmares have begun. Not your typical scary monsters or gruesome scene nightmares, but nightmares that are filled with uncertainty, a loss, a feeling of emptiness and full of worry for my child. The other night I woke up in a panic, a tight feeling in my chest and tears in my eyes. In my dream I couldn’t find Gracie (even though deep down inside I knew she was gone). I thought I sent her to a babysitter I had never meant and I sent this babysitter an email asking where my daughter was because I wanted to come pick her up because I hadn’t seen her in a long time( I know- really strange!). When I got to work the babysitter had called and said she didn’t know what I was talking about and that she hadn’t seen my child. I got off the phone and looked at my co worker and couldn’t speak because I was so scared, but mouthed the words through a tear filled, fear stricken face- “I don’t know where my daughter is….” And then I woke up and was so sad and scared because I truly don’t have any way to know where she is…. And that scares me. I believe she is with God in heaven, but I just wish there was a way to absolutely confirm this- a call, an email, a “hey, were up here in another world and were doing fine”, but I have nothing except my faith. And when certain important days come up like her birthday or the day she died it’s so hard, I miss her so much and my faith waivers. I just need a sign or something to tell me it’s ok. I so wish Gracie would come to me in my dreams, but instead I get woken up with nightmares of wondering where my child is.

Why do these nightmares start in April? Because it’s her birthday month. I should love April for the simple fact that my daughter was born this month. I should be planning a 6th birthday party for her- deciding on a theme, where to have a party, who to invite, what kind of cake and so much more. But instead I face April with anger that Gracie will never have a 6th birthday here with us. Anger that I only got to spend one birthday with her. Anger that she will only be known as a 21 month old forever. Anger that cancer took her life. And anger that right now all I hear and read about is our presidential candidates spending millions on their campaign. Just this morning the news reported that 1 candidate who is trailing is expected to spend 44 million this month to try to beat his competitor. Really? My daughter doesn’t get to have her 6th birthday because the money needed for research isn’t there. But you can spend millions on politics? Ugh, what a sickening world we live in.

My birthday girl is dead and that’s an extremely hard thing to celebrate. I won’t share or show my anger or sadness with you when you see me. It comes at night , in my dreams or when I’m alone. It’s hard to not be angry, sad or depressed. But I have another child and one on the way who don’t deserve to see me angry or sad over this. But my family needs to celebrate in some way and we need to do something for Gracie. It would be easy to say let’s forget the whole day and go on with our lives. But that would be pretending that nothing ever happened and what good does that do when we pretend nothing happened? As angry as I am, I want to do something. I want to do it for her. I need to do it for her. A birthday party for a little girl who will never open presents or blow out her birthday candles we will never have. But we will acknowledge April 14th as a day we will forever be grateful for. I’m not sure I could ever see it as a celebration… how could I when the birthday girl is dead? But we will do something amazing in her name and honor on the day we were blessed to welcome her into our lives. There will be tears of sorrow, but there will be smiles filled with love knowing she was in our lives and continues to inspire us to help others every day <3.

As I am writing this on a snowy day in April and thinking about how extremely rough her birthday is and how angry and sad I am, and as I begin to question my faith… I get a sign. I happen to wipe my tears and look out the window and on a snowy branch I see a bright red cardinal just hanging out. So I look up the meaning of this and it said, “A cardinal is a representation of a loved one who is passed. When you see one, it means they are visiting you. They usually show up when you need them the most or miss them. They also make an appearance during times of celebration as well as despair to let you know they will always be with you. Look for them and they will appear.”
My anger and sadness are slowly melting away…. Thank you Gracie. Happy Birthday my little girl <3

The picture above is my baby’s heart, Gracie’s heart. It was given to me from one of the best pediatric surgeons in the nation at Sloan Kettering in NYC 4 short years ago, and it has been hanging on my fridge ever since. You’re probably wondering why he gave me a picture of Gracie’s heart. I know I questioned it when he gave it to me. But I now know why he gave it to me and why this picture has more meaning than anything else I have hanging in my house.

Four years ago this January, Geoff, myself, Gracie and one of my best friends headed out early one morning for a very important, life changing doctor appointment at Sloan Kettering in NYC. We were going to see if this doctor could possibly save Gracie’s life.

Gracie had been on a very high dose chemotherapy after her tumors started growing again and the clock was ticking on if and when the tumors in her body would start taking over once more. Her only option for survival was to shrink the tumors so that we could remove them from her liver and resection it. This was the plan from the beginning- receive chemo, shrink the tumors, surgery, and more chemo or radiation. Sounds simple, but it was not for our Gracie and the type of cancer she had. There had already been setbacks before our appointment, but our Gracie could not hold on much longer. We had to go see this surgeon and hear his answer ourselves on if he could help Gracie and our family.

We arrived at Sloan Kettering early in the morning and navigated our way through NYC to find the hospital and our answer. As we entered the pediatric floor I was overwhelmed. It was very large and full of patients. I thought to myself, this is one of the “big” hospitals that so many kids fighting cancer come to for answers. I wonder how many get the answers they’re looking for. We all sat in the waiting room and watched the kids play, parents wait with worry on their faces, and nurses and doctors come and go through the door that led to the patient rooms. I sat and prayed that we would go through that door and receive a miracle. After some time it was our turn to go through that door and we were brought to a patient room. We all squeezed in and waited for the doctor. The doctor walked in and said hello and I immediately started to cry. Everyone looked at me, wondering why I was crying when the doctor hadn’t even said 2 words yet. I didn’t say it at the time, but I knew before he said a word what the answer was. I knew he was going to say those 6 little words that no parent ever wants to hear and I just couldn’t hold back my tears. The doctor we met with was a surgeon so bedside manner was exactly what you would predict. He did his job, was to the point, reviewed the scans and slides, tried to examine Gracie (who was very fragile at this point) and finished with those 6 little words “there is nothing I can do”. He was firm with his answer and we all knew there was nothing we could say or do to change his mind. The surgery was too risky and would most likely not cure or rid her body of the cancer. He then looked at me and gave me a picture of a scan telling me it was my daughter’s heart and he thought I should have it. That was it. My daughter was going to die.

But why did he give me a picture of her heart and why is it still hanging on my fridge 4 years later? I realized later that picture was his way of showing he cared. He looked at Gracie’s scans and reports before we even got there and he also knew the answer he had to give us. He knew my daughter was going to die and he wanted to leave us with a picture of a very important piece of her, her heart. The central or innermost vital part of her body that was so full of love and so very strong and healthy. This surgeon gave me much more than a hug from him or any kind words could give me. He gave me a picture that will remind me forever that my daughter had a big, beautiful heart that lives on in myself and my family and friends. I know that we will keep her heart beating in ours for years to come.

Honestly, January hurts. It’s been 4 years since they told us there was nothing more they could do and 4 years ago on January 17th she died. I miss her more than anyone could ever imagine. But when the pain gets to be too much I walk to my fridge and look at this picture of her heart and it reminds me she was here, she loved us with all her heart and she will forever live in my heart.

I love you Gracie. Happy 4th angel birthday.