16

Mary,

Happy birthday. Today is the hardest birthday without you so far. 16 is a huge milestone and we will surely celebrate. We will celebrate your life and all the amazing, wonderful things you accomplished and are still accomplishing. I will try hard to focus on that instead of what is missing and lost. Instead of feeling sorry for myself I will try to remember the blessing that you are. It is depressing making a cake for someone who can’t enjoy it but I’m sure in Heaven you will have some of all

your favorite foods. I know they will taste a millions times better than they do here on earth. Your  image is missing from my eyes but you are never gone from my heart. I believe your spirit is surrounding us and I know you are never too far. Please show me a sign today, I can’t deny, because honestly I need it. I just need confirmation you hear me and are with me, especially today. 

I get called strong and courageous, but it’s all fake. I fake a smile and I fake inner strength because I have no choice but to go on without you. Living daily without you is like trying to breath under water. It seems impossible and I mostly feel like I am drowning. I hear you saying to me “Momma, I’m sorry. I’m here. I love you. Be strong” so I try. I stay as busy as I can and I try to be productive, this helps. I sometimes write letters to you now because it helps me process and I feel like you can read them. I just wish you could write me back. All I want is to find a purpose and happiness again. It’s hard. I know too much about the darkness of the world, but I try to walk in the light. I just want you to be happy and at peace. I want to see you and hold you again. How can you have been gone from my arms for 3 years??? It seems like a millions years ago since you left this world and at the same time it seems like yesterday. It’s complicated and confusing all in one. I think partly because losing a child is something hard to comprehend and goes against human nature. And part of

the problem is accepting that time kept moving after you passed. It just seemed all wrong for the earth to keep moving. I love you. You made me a mom, the only thing I ever wanted to be. You taught me patience and true love. I am forever grateful to you and I feel like the luckiest person in the world to have been your mom and to have had you as a best friend. Happy 16th birthday today. 

XOXO,

Mommy

-For those who want to honor Mary and her life today a good way is to do something meaningful and special for someone else. Remember her. Pray for our family. And/or give to a charitable organization in her honor. You can always give to our “United for a CURE” fund where we donate 100% back to research for pediatric AML. If you give $16 today we will know it will be in her honor and to celebrate her birthday. Thank you. 

Follow for a link :

www.curechildhoodcancer.org/united 

Mary’s Shoes

In her shoes:

These are Mary’s shoes. Adorable and pink and spunky like her. I remember the day we went shopping for them. She knew just what she wanted so we went to the mall and she picked them out. I sometimes wear them. They make me feel close to Mary. They are very comfortable. They are also about a half size too small, because they are her shoes and not mine. I keep them around and look at them often. I recently got to thinking that most people have no idea what it is like to have walked in her shoes. They can’t grasp the concept of a day or minute or even an hour in her shoes. I walked closely beside her while she wore these same shoes but even I can’t understand how it felt to actually walk in them. I realize most people couldn’t have survived very long in her shoes. And no child should have to walk the same path Mary traveled. Some children battling cancer walk a shorter, easier path and many walk an even more difficult path. A more difficult path is difficult for me to comprehend. I tried hard to remember what a day in her shoes looked like during cancer treatment and it went something like this:

6 a.m. You don’t really wake up because you never really went to sleep. 

7-8 a.m. Nurse changes and medicine given.  

8-9 a.m. Doctors visit and my parents try to make me eat something even though I am feeling nauseous. What I would like to eat isn’t on my “special diet”. I really wish everyone would quit poking at me. It’s annoying. 

9-10 a.m. I have to get up to go to the bathroom. It takes about 20 minutes so I hate going. I have what feels like 100 wires tangled around me. My body aches all over and I have neuropathy (nerve pain) in my feet. It feels like 100’s of needles poking me at one time. When I get up a huge pole with all kinds of buttons and monitors and tubes and medicines has to go with me. It’s awkward and cumbersome. It takes forever to unhook me from it. Sometimes it trips me up and pulls at my skin where the needles and bandages are secured. This HURTS! I need
 help from at least two people to sit and wipe my bottom. Embarrassing and frustrating-Ugh.🙄.

10-11 a.m. I try to text my friends and watch a little YouTube but I have to go physical therapy. I go in a wheel chair because I’m too weak to walk that far. 

11-12 I am made to eat again, food I don’t want and can’t really eat anyway. My teeth and mouth hurt.  I have mouth sores and everything just aches. 

12-1 p.m. I doze off just to be woken up for a  change of the bandages around my chest tube. It is tedious and painful and takes about 30 minutes. Sometimes it bleeds and gets infected. 

1-3 p.m. I am taken down for X-rays, MRIs and radiation. 

3-4 p.m. I am so tired but a counselor comes in and wants to talk about how I’m feeling. Really!?!?!I feel like sh*t.

4-5 p.m. The nurses make me walk laps around the BMT unit. They try to make it fun. They play music and make jokes and dance. They are silly and ridiculous, but I love them. They love me even when I am grumpy and 
mean to them. Really, I just want to be left alone and to have a little peace. 

6-7 p.m. Doctors return and talk about me, in front of me. I try to block all the information out. It’s too much to comprehend. My parents explain things to me later. I just want to get better and go home. 

7-8 p.m. Nurse change again and I don’t eat...again. The night nurses are not as friendly. I really just want a Starbucks and Zaxby’s chicken nuggets. Yummmmm.

8-9 p.m. Bath time means 100 tubes getting in the way, 3 people in my business and no privacy. I can’t get certain areas wet, that’s why I need help. I would love a real bath and to wash my hair. Oh yeah, I don’t have hair. Ha. 😆. Oh and really good smelling soap from Bath and Body Works would be a treat, not this nasty antibacterial hospital soap. Ewww. I’m 12 yrs old. I need some privacy. 

9-10 p.m. I wish I could sleep. I wish I could get comfortable. I wonder what my friends are doing. I wish I was a normal kid in school. What are my brother and sister up to? Do they miss me? Will my life ever go back to normal? How did I even get here? Will I ever get better? Does God hear me? I am so uncomfortable. This is not even a real bed. It’s tiny and scratchy and small. I am in so much pain. Maybe I can ask the nurse for some pain meds and try to sleep. Please God make me better. My mom looks so sad and she never sleeps either. I just want to go home. 

10 p.m.-6 a.m. Constant beeps and nurse visits. Constant pain and stress. Endless nightmare. 

This was just an example of one day of 100’s just like this Mary had to endure. Some were better than this and many were much worse. 

Please pray for those who are fighting this same battle and soon to face this battle. Pray for strength and perseverance. 

Thank God if your children have health and normalcy and problems that can be easily solved. Be thankful for illnesses that can be treated and easily cured. 

A day in my shoes looked like walking beside Mary, holding back tears, trying to disguise worry, begging God to save her multiple times a day, spending countless hours scouring the internet for information and new treatments for my child’s disease, encouraging her, trying to find time to eat, sleep, bathe, and to smile and laugh with her. Life was still worth living if you could find a real reason to smile. I tried hard to avoid mirrors because the person looking back at me was a stranger I no longer recognized. The person I now saw reminded me that I was also sick and sad and lost. I didn’t need to see that person because that person didn’t matter anymore, the only thing that mattered was saving my daughter. 

Mary would be 16 Feb 5th. I imagine she should/would be wearing different  shoes today. Shoes not made for comfort but for fun like-heels for a school dance, dance shoes for dancing at RISPA or tall boots for stylin’ in the high school halls and hanging with her friends. 

Mary,

There should be another word for missing you because I more than miss you. When I lost you a physical piece of my heart and soul was forever ripped away. My heart forever aches for you. I can’t wait until I get to see you again. I hope you are driving the car of your dreams in heaven. I imagine you are driving a pink convertible blasting your favorite tunes with your best friends in the passenger seats. In Heaven you don’t need seat belts or speed limits. How fun. 

I miss you. 

I. Love. You. Forever. 

New Year 2019

I know I am excited for a new year and for new beginnings. These past few years without Mary have been tough. Tough is not even the proper word. They have been brutal, exhausting, trying, frustrating, maddening, depressing and so much more. But I “try” really hard to not dwell on the past. I “try” to live in the moment and focus on moving forward into a more positive future. For a long time I was stuck in limbo and sometimes stuck in the past. Being stuck is the worst feeling. When I look back over the past few years it seems like an eternity. When times are bad it seems they drag on forever. When times are good I want to hold on tight to those times but they seem to fly by.  I am excited to see what 2019 brings. I am excited that I have the ability and the opportunity to make positive changes in my life. After some really dark days, one day I woke up and realized I had two choices: 1. Throw my life away and continue to fall apart 2. Fight to live and make the most of this life...I chose #2. That day everything changed for me. It’s been a daily struggle but it is what I needed. I decided to take charge of my own health and happiness. The truth is no one is going to care for me as much as I care for myself. It’s my job, not someone else’s. I can only control my actions and my behaviors so I decided to focus on me for once in my life. It was really hard to do. It felt selfish although taking care of yourself is not selfish. It is necessary. Honestly I realized that if I didn’t take care of myself I wasn’t sure I was going to be around many more years to take care of my children. That was my biggest motivation. My kids=my world. Stress can kill you, you know!?!?If you don’t know, well it can. And it will be a slow agonizing painful death. 

Recently I had a memory of some conversations Mary and I shared in the hospital. We use to spend  hours talking about being frustrated with how badly we wanted to get out and make change happen in the pediatric cancer world.  But we felt trapped and unable 
to do much while we were stuck in the hospital and while she was undergoing intense treatments. We killed time and stayed positive by designing T-shirt’s to raise $ and making Facebook posts sharing her story and awareness. We talked about and planned all the things we would do when she finally got out of the hospital and was healed at home. It kept her mind occupied and her motivated to get better. After she passed I was stuck in a type of limbo and unable to make myself do much. I now finally feel motivated to do what Mary and I always dreamed about and that was to find big ways to make big positive change. I know it’s possible. I feel the same about my everyday life. There was a time I felt alone and lost and stuck but I’m ready to find more peace and happiness this year. God has shown me in many ways that he didn’t ever abandon me.  Although at one time I was positive that He did. He has shown me mercy and love and hope. I can now see that sometimes you need to get knocked down to learn to surrender and trust Him. I am very thankful for this. I am a much different person than I was before Mary’s cancer. I like this person. It’s not
 a “new” me but the real me. The person I was always afraid to be. After living through cancer and losing a child not much scares me anymore. It doesn’t matter if anyone else accepts me or understands me. Those that really love me will always love and support me. You get one shot at this life and it is mine alone to live. As long as I am proud of who I am then that is all that really matters. I aim to be a good mom and make Mary and my other two children proud. If I accomplish this then I am a success. If I am a healthy and happy person then I AM the best mom I can be. I’ve had to do a lot of soul searching these past few years. I’ve had to learn who I was, find my purpose and create future goals. These are things I’d never really thought about before losing Mary. I always lived my life for others and for the approval of others. Life is short and mine is not over-so I plan to make the most of it. Bring on 2019!!!

Lessons learned in 2018

Take chances, it’s better than never knowing

Everyday is a blessing, make the most of it

Never apologize for who you are

You don’t have to accept being treated poorly, walk away

Fight for what you believe is right

There is bad in the world but there is also a lot of good

You are stronger than you believe

You will have bad/wasted days, get through them and move on

You will make mistakes, leave them in the past and look forward

Use your voice and speak loudly, make people hear you

Love yourself and be good to you

Don’t worry about how others perceive you as long as you feel good about yourself 

Everyone deserves to be treated with love and respect 

Actions speak louder than words

When in doubt always choose love and kindness 

Life is hard but it is also beautiful 

God will fight for you, even when you don’t feel Him there. Sometimes you need to just “Be Still”

*Most Important lesson... “Be Brave”

Thank you Mary

~Wishing all my friends and family the best year ever! 2019 🥂

Isaiah 40:29-31

“He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

Why I care...and you should too. 🎗

Many people probably believe I am passionate about childhood cancer because I lost a child to the awful disease. That is only partially true. There is so much more to my story and many reasons why I can’t function daily unless I keep the fight going. Awareness is just 1/2 the battle. Trust me, before my daughter got sick I knew almost nothing about childhood cancer. Honestly I didn’t want to know. It’s not exactly a pleasant topic. As most people probably do I turned a blind eye to the cute, sick, bald children I saw on TV commercials. I might have read a few facebook posts about a sick child then I would think “How sad and horrible”.  I’d maybe say a prayer and move on with my day. I mean, isn’t St Jude curing all of them!?!? Send them your $20 a month and all will be ok. Right!?? 

The truth is, as wonderful as St Jude may be the commercials are very deceiving. They pull at your heartstrings but we are very far from a 80% cure rate. I believe people need to know the real truth and honest facts in order to want to join in this fight against childhood cancer. Unless you know the truth you can’t understand the urgency and need to make changes. Looking past the horrific treatments these children endure such as the prods and pokes, the burns, the screams, the sickening chemo, countless medications, nausea, indescribable pain, transfusions, sleepless nights, months and sometimes years...there is so much more to understand. I can try and explain what the nightmare is like but there are literally no words to describe how horrific it actually is. It is unimaginable and I describe it as a war with bloody casualties and horrendous scenes you can never unsee and only wish you could. Watching your child tortured day after day is your only hope for saving them and there is nothing you can do to make it stop. It destroys families and lives. It changes you~ forever. The truth is this...doctors, specialists, nurses have the best intentions to cure your child but the advancements are so few and the knowledge is so little that they are really just giving treatments their best guess. Some kids have cancers that are considered rare with a slight chance of survival and they survive. Some have more common cancers with high cure rates and don’t survive. It’s a game of roulette. Some types of childhood cancers do have more treatment options and higher cure rates because they have gotten most of the attention and funding while some have zero cure rates and little to no advancements. The treatments for all

of them are barbaric and many treatments haven’t changed at all over the last 40 yrs. There have only been a few drugs approved specifically for children while adults have 100’s of drug options...think about that...how can this be? It is for many reasons. I believe the main reason is because kids don’t have a voice. Many parents that go through this cancer experience can barely survive it themselves much less talk about it during or after the fact. If their child does survive many want out of the cancer world for good, understandably. They desire a life of normalcy and without the burden of cancer. If they lose their child the grief is too painful to constantly relive. 

Drug companies deal with a lot of politics and red tape. They don’t want to experiment on children for ethical reasons. In order to try out new drugs on children the child has to be in fairly good health. Many of these children are in frail health and have aggressive or advanced cancers and don’t quality for drug testing. This is even though parents may beg for any new treatment options when the typical treatment options are exacerbated. We did, we begged and searched to no avail. Most childhood cancers are diagnosed after they are already in advanced stages. Many symptoms are subtle or acute or written off as typical childhood aches and pains. Many adults are diagnosed at earlier stages and have symptoms they can express to doctors and are able to request more testing. 

The National Cancer Institute (NCI) is the government agency that funds most cancer studies. Of all the $ they allocate  less than 4% is granted to children’s cancer research. Children are not a national priority and only the most common cancers get most of that 4% pot. The more “rare” types have little funding and therefore have made few advancements. Some types of cancer like DPIG have a zero percent cure rate...zero. The 5 year survival rate = a cure in the cancer world. Many of these children that survive for 5 yrs. after diagnosis are not necessarily cured. Many relapse months/years later and many are still enduring treatments at the end of 5 yrs. Some are lucky to survive but of those who survive 2/3 will have severe and lingering health problems because of their cancer treatments. Adult cancers and children’s cancers are totally different entities. What treats an adult may not benefit a child with the same cancer. A child’s DNA and bodily make up is different from an adults. Researchers and doctors are now realizing this and beginning to treat them differently. There are 12 main types of childhood cancers and literally 100’s of subtypes. We need alternatives to chemo and more targeted therapies. We are finally seeing some new less aggressive treatments being developed but it’s slow moving. It’s all about the money and money is needed to fund cures. If the government isn’t helping then it is up to private organizations to raise the needed funds and support the studies with the most promising research. That is what we do with our “United for a Cure Fund”. I fight with Mary everyday by first spreading awareness then finding ways to raise $. I plead, I beg, I expose my heart. It’s worth it to me. I couldn’t save Mary but maybe I can help save another child in the future. 

When I first realized all of these true facts it blew my mind. In an advanced society where we can put a man on the moon and develop an atomic bomb why haven’t we found cures for childhood cancer? Or maybe a better question is why hasn’t anyone cared before? Now with social media and other news outlets we can share our story, our reality and work to help change things one person at a time. In fact childhood cancer has never been a priority. Ever. One child suffering is one too many and hundreds of thousands have suffered for way too long. My daughter once said to me, “If I have to die so others can live then I’m ok with that.” As much as I didn’t want to hear her say this at the time I believe she was much smarter than me. She has always been smarter than me and she knew something I didn’t. If she survived then the people who followed her story would never grasp the urgency for change. We shared Mary’s life through cancer because she wanted to. She wanted to change things and help others, her life was a secondary concern to her. I can promise you one thing, cancer is not rare. It will effect your family at some point in time if things don’t rapidly change. The childhood cancer rate is increasing, not decreasing. 1/285 children will be diagnosed with cancer by the time they are 20 yrs old. That’s 700 kids a day! Cancer is the LEADING cause of death by disease in children under the age of 19. The life span of a child effected by cancer is shortened by an average of 30 yrs. 

If it hasn’t touched you already it will one day be impossible to turn your head if things don’t change. I just pray it isn’t your child, immediate family or best friend who is effected. But it very well might be. 

Every penny we raise we give to research we feel is making fast and important advancements in the childhood cancer world. We want a cure. A good cure. One with less harsh treatments, fewer side effects and more lives saved. You can help by giving whatever you can and also by sharing our story. Thank you to all of those who don’t and didn’t turn their heads, who continue to lift up our family and constantly support us. There are thankfully many of you. ❤️🎗XO

www.curechildhoodcancer.org/United 

http://events.curechildhoodcancer.org/site/TR/3rdParty/General?px=1001429&pg=personal&fr_id=1070

Graduation 👩‍🎓 Staying thankful

Graduation time always stirs up a ton of my emotions. I am always reminded that Mary Elizabeth will never get her chance to graduate from high school. She was not even able to graduate from middle school. She loved school more than any child ever could. She loved learning and socializing~all of it. She loved life in general. She was very smart, super duper smart. She was going to go places and do great things. I have to remind myself that she already has done great things and has gone to the greatest of places even if they were not in the same way I anticipated. By some miracle she was able to attend her 5th grade graduation since she was feeling fairly healthy between chemo treatments. It was a wonderful memory and something I will forever treasure. Her whole class greeted her in hospital masks and they danced the afternoon away. Those same kids are now high school freshmen moving up to be sophomores. I thank God for that special graduation moment we didn’t have to miss because of stupid cancer. Cancer had robbed us of too much already. Life is made up of many 
moments. Some moments you want to remember, some you want to forget and some you can’t forget. I always tried to take pictures and keep a vivid record in my mind of the good moments. I never took special moments for granted even before Mary got sick. I was always thankful for all the good in my life. I think deep down I somehow knew to soak up every happiness because it might be fleeting. I didn’t need cancer to remind me. I wish everyone could step back and just be more thankful. All the good moments remind me of my many blessings. They keep me breathing daily and looking forward to tomorrow. The tough moments teach me hard lessons I can’t easily forget. 

Remember when you get sad that your children are growing up there are many that would give anything to be able to see their children grow up and have these wonderful same experiences. It’s a time to cherish not a time to mourn. You can mourn when there are no longer memories to be made. Next year Whit will graduate from 5th grade at the same elementary school Mary did. Maddy will graduate from the middle school Mary never got to attend but wanted to attend so desperately. It will be an emotionally difficult time but I will also remain thankful for the amazing accomplishments of Whit and Maddy. They make us very proud everyday. I know Whit and Maddy live through these wonderful moments knowing they need to make the most of them and live to do the things their sister could not. They learned too young that life is short and nothing is guaranteed. I know Mary is also very proud of them and she is watching them succeed in life from her wonderful new home in Heaven. Maybe my kids are not in all honors classes, they are not always the most athletic, talented or whatever. What they are is happy. They are strong and they are healthy. I’ll take that any day. 

Life can only be understood backwards; but it must be lived forwards.

-Søren Kierkegaard

15

Mary’s birthday is here. She would be 15.  I can’t even fathom this to be a true fact, honestly. I imagine how tall and beautiful she would now be.  She would be learning to drive (scary). I believe she would be performing in many singing and dance performances at RISPA,  school and church. She would have many wonderful close friends who appreciate her sense of humor and her gigantic heart. I am sure she would be active in many clubs, church activities and projects that help others in need. To go there in my mind and really think about all of this breaks my heart in two. I will never fully understand how and why she was chosen as the unlucky one to have been taken by the evil that is cancer. Maddy is helping to plan her birthday celebration. Thank goodness for Maddy, without her I couldn’t plan effectively or even think clearly. She is a sassy boss lady, but she gets the job done. We have made it a tradition to make Mary a special cake, send notes to her on pink balloons to Heaven and to spend the day just celebrating her. Reliving good times and happy memories makes the pain a little more tolerable. Maddy and Whit are so strong and amazing. They love their big sister with their whole heart. We will forever be broken with holes in our hearts and nothing can completely fill them. I think these special activities help them connect and “speak” to Mary. All of this is very painful for me, but I know we will forever celebrate the day our first perfect, spunky and beautiful baby girl was born. Mary’s siblings will never forget her. They will always look up to her and celebrate her life as often as possible. Cancer sucks!!!

Dear Mary,

Happy 15th Birthday!!!!

We miss you terribly and we desperately wish we had your human self here to physically love on and celebrate with. I feel certain your spirit will be with us celebrating this very special day. Maddy has designed a special cake and we will be sending you some balloons up to Heaven. I am sure this would be a very important day for you if you were still here with us. Maybe you would want a new phone, new make up and new clothes. But I am certain that you would also be giving to someone else in need and not thinking about only yourself. That is just how you were. We ask you to give us some type of sign so we know you are here with us. You always come though. Every time I think about another birthday without you my heart hurts. It physically feels pain. It will always be this way, I am afraid. 💔

In keeping with birthday tradition I will share and remember your birth story. You always loved hearing it and PaPa always did the same for me. Yours is a doozie...here goes...

Before I got pregnant with you I had suffered many miscarriages. So many, in fact, that I lost count. But I was determined to have a child of my own. I begged and pleaded with God to help me. “Just one child please God, just one.” 🙏 When I first found out about you I was excited but guarded since I had already experienced so many disappointments. I carried you always scared and worried that you might be taken from me at any moment. Your 20 week appointment told us you had some health issues and we would have to watch you closely throughout. There was a chance you might not grow as big as you should and might not survive to full term. I got ultrasounds often which actually gave me some peace. I bought my own heartbeat monitor so I could listen anytime I wanted at home. Once I could feel you move I was able to breath a slight sigh of relief. We found out you were a girl and we were thrilled. We named you “Mary Elizabeth” after your two great grandmothers. It was a perfect name just like you. I got busy decorating your nursery. That was exciting. It was very pink and very girly. I had your name put on the wall, a full wardrobe of monogrammed clothes and I was ready for you. I would often sit in you room for hours picturing you and waiting. I would rock in the pink gingham rocker and dream about you being in my arms. Around 37 weeks I just knew something was up and you were ready to be born. My doctors thought  I was being irrational but to humor me they checked and I did have some leaking fluid. My heart told me you were ready to be born, I need to always listen to my heart. Sometimes I forget. I went to the hospital ready to give birth. Everything went very fast and you arrived in a dramatic way, as I should

have expected. Nothing about you has ever been “ordinary”. You were born with your umbilical cord wrapped twice around your neck. So tight that the midwife had to cut it away. During all this drama your two excited grandmothers were tying to burst into the room and had to be shoed away several times. Everyone was more than ready for your arrival. You were perfect. Actually you were the most perfect and beautiful baby I had ever seen. I was expecting you to look different. Maybe squished or red-I’m not sure. You had a perfect face, a head full of beautiful brown hair and when you cried it was the most wonderful sound I had ever heard in my whole entire life. You were skinny and tiny like a “naked wet squirrel”. When I bathed you for the first time I cried because I was scared to break you. I had to leave the hospital before you because the doctors wanted to keep you an extra day to make sure you were healthy enough to go home. I remember vividly pitching a huge fit because I didn’t want to be separated from you for even a moment. I had stayed up constantly since you were born, not sleeping a wink. I think I was worried someone would take away my most precious gift. I felt the need to constantly protect you. That feeling never went away. I left the hospital crying with empty arms. It was the worst feeling I had ever felt up to that moment in my life. Unfortunately I would experience a much worse feeling 12 years later when you were taken away from me and I had to again leave the hospital without you in my arms. The night after your birth I was “kicked out” of the hospital. I think I called every hour all night long to check on you. I woke your daddy up at 5 a.m. to take me back to you. I hadn’t slept and I needed to get back to you ASAP. I went into the special care nursery around 6 a.m. and refused to leave until I was able to take you home. They finally relented. I’ll never forget what I was wearing coming home, noticing the pink balloons on the mailbox. You were wearing the most beautiful onsie (that was wayyy too big) and a cute little white bonnet. Excited grandparents met us at the door. I expected life to slow down once I got you home...it didn’t. I hardly ever slept (no exaggeration) for the first two years of your life. I worried constantly that something would take you away from me (I was right about that). I constantly listened to your breathing and dealt with your health issues all along the way. But I wouldn’t change a thing. We often tell stories and laugh about how you never wanted to miss a moment. You were the most spunky and strong willed child I had ever known. This served you well throughout your cancer journey. You were not scared of anything and we had to sometimes put you behind gates just to keep you safe. You grew into the most loving and greatest big sister ever. And the smartest most loving daughter I could have ever hoped for. I could talk about you for days but I am sure you are busy and have work to do and your birthday to celebrate with your friends. I know you feel how much we all love and miss you. That will never stop until we are with you again. Save a spot for us at your party. I will love you forever and ever. 

Mommy

*Each year on Mary’s Birthday we celebrate Mary by asking our friends and family to donate $ the same amount as her birth age to show her love. This year she would be 15. If you feel led to do so you may donate $15 to our United fund that we use to fund research that will destroy pediatric cancer, specifically AML, for good.  Mary was very adamant that we join her fight to find a cure. Thank you! www.curechildhoodcancer.org/united

Happy New Year Mary Elizabeth,

Dear Mary, Elizabeth,

Happy New Year!!! 🎊 its a time for new beginnings (which I need) but it also means I survived another year without you. New Year’s Eve was a hard time for me.  It use to be fun with you. When you were here we spent family time together and had PJ parties with friends. We would stay up for the final countdown and toast with sparkling cider. Those wonderful memories I will treasure forever. I try to enjoy these, now mostly painful, times as much as possible. My smile might look real but it is really just hiding the tears. I can usually hold them back if I mentally block the memories from reaching the surface. Lately I have had a few public meltdowns. The tears flow and I can’t stop them. I don’t like not being in control of my emotions but I’m sure this is part of the grieving process. I have so many wonderful memories with you. Many more good times than bad. The not so great memories are the ones that I don’t want to ever have to remember but they sometimes invade my thoughts. Like the New Years that you had your first lung bleed and intubation. Other than witnessing your passing watching you be intubated was the worst memory of my life. I believe there are few things much worse than seeing your child having tubes and machines breath for them and keeping them alive. Watching you lay paralyzed and helpless was unimaginable. But not being able to help you was worse than horrible. I held your limp hand for hours and I prayed and prayed that I would be able to hear your sweet voice again. I’m sure I tried to make many deals 
with God.  Thank goodness you came back to us. I often wondered what you felt and heard during those times. Thankfully you seemed to not remember much. Many times when things felt hopeless a miracle would save you and bring you back to me. Only a miracle could do that. When we lost you I questioned those miracles. I thought that maybe they were just wishful thinking or my imagination. I’m starting to believe in them again. Please tell God I’m sorry for my anger and doubt. Although I’m sure He knows and understands. 

Today we had more snow and I wish you were here to enjoy it. It’s hard to enjoy it or have any kind of fun without you. I hope you have snow in Heaven. I can remember you waiting by the window excited and impatiently waiting  for the first flake whenever you heard there was a chance for snow. Then you would run around wild with your brother and sister. But you were always watching to make sure they were safe and behaving. We would make snowballs and mini snowmen. We would make snow cream and laugh about not picking up the yellow snow. I miss you so bad that it hurts. My heart aches for you. I know I will see you again. I love you so very much. Happy New Year in Heaven. I can hardly wait until our reunion.

                      Love,

                  Mommy