Wednesday, February 3, 2021

5 Years of Grief

Grief (5 + years out)

It has been a while since I last blogged. I felt it was a good time to post something that I can review later in life and hopefully see my growth. Also, maybe I can help guide others fighting their own grief.

Mary Elizabeth would soon be 18 years old (This Friday Feb. 5) and I honestly can’t believe it. I don’t know how time has moved on like it has without her. I always miss her but this will be an extra hard year. I would love to see her as an 18 year old ready to take on the world.

Grief is a touchy topic. I am no expert and I can only speak from my own experience. I get asked often how one can comfort those they love who are grieving. Maybe this will be a helpful guide for them.


First, I want to say the grief of losing a child is unlike any other type of grief. It has no rhyme or reason and there is no guidebook. At least none I have found. Everyone is different and I never had a personal interest in reading anyone else’s guidebook. I wanted to find my own way. That’s just me though, I am different than some I know going down this similar path. Many like group therapies and get a lot out of it. I, on the other hand, do not. I am too empathetic and tend to carry other’s burdens as well as my own. I honestly only trust and open up to those whom I know I can 100% completely rely on. Group therapy and support groups just seemed to deepen my wounds and kept me in a dark hole. I also didn’t want to seek advice from those who hadn’t walked in my same shoes. I do appreciate those who are further down the grief road who can assure me there is more light than darkness as I move forward on this journey. It has given me something to look forward to.


Year one for me was a legit sh*t show both mentally and physically. It was a wasted year of self-loathing and feeling very lonely and lost.

Lets talk about denial. It’s a powerful coping mechanism. I function mainly in a semi-state of denial on the daily. The actual truth is just too much to handle. I think it’s the only way I am able to move forward when my heart and mind still can’t make sense of this kind of loss. I’m not sure if this is a good or a bad thing, it just is what it is.

I remember after losing Mary I would look in the mirror and see an old, haggard lady staring back at me. I had no idea who this person was. It is a very strange feeling to not even recognize yourself. I wanted to lay in bed all day curled in a ball. I didn’t want to talk to anyone or see anyone. I wasn’t able to do this though. I put a fake smile on my face and got my kids off to school. Then I might return to bed only to get up and fake smile again when they came back home. 

My advice to someone who has recently lost a child is to do what you need to do. There should be no judgements. Stay in bed or don’t. Cry or don’t cry. Sleep or don’t sleep. Eat or don’t eat. No judgements here. Take your time getting back to life. Just eventually get back! 

I would often show up to events that honored Mary with zero desire to attend. Honestly I probably shouldn’t have even been there. I really wanted to wallow in self-pity and be left alone. Instead I pretended to be strong when I was literally dying inside.

Slowly, I did start to feel human again. I put on make-up, got new clothes and dyed my hair. I tried to exercise and lose a few pounds. I did some things for me. I felt zero joy but tried to find it where I could. Only then to feel guilty for cracking a smile. 

Birthdays were the most confusing and sad times for me. Holidays sucked too. I didn’t want to celebrate a milestone or a special occasion without my child. It felt wrong on so many levels. I also didn’t want to disappoint those around me. Honestly, I wanted to just die. I wanted someone to understand me and feel sorry for me and to also not judge me.

I eventually discovered a few very important things as I was going down a very destructive path.

First, I was only hurting myself. I was pushing people away and they were leaving me. No one was going to save me from my despair. No one wanted to be around a miserable and negative human-being for very long. I felt ugly on the inside and I hated myself. I decided that I could either live more years in this emotional hell or figure out a way to slowly heal and become a better person. I hated the person I saw staring back at me.

I found a therapist that I love and I took some meds for my new found depression and anxiety.

What is so very difficult about losing a child is that it affects everyone inside your immediate circle. Your whole support system is also dealing with their own grief. They aren’t necessarily readily available to help you like you might need or how they have been in the past. It affects siblings, grandparents, aunts, uncles, cousins etc. Your spouse most likely is handling grief in their own individual way and is incapable of being the support you need. Men and women handle grief differently and that is just a fact. This was new to me because with most things in life one of us could be strong while the other was weak. In this situation we were both weak.

 

I wanted to be strong. I wanted to find my way. It has been a long, hard journey and a very changing one. I did not want to be alone but I also did not want anyone else to feel this pain. I am forever changed and different. I do not think in a good or bad way necessarily, just different. I am more honest (probably too honest), I am more vocal and absolutely a more powerful human being. I can never go back to before. There is the me before Mary died and the me after. This is who I am. I do not care what anyone thinks of me. I only care if I can live with the person I am today. 

I can.

 

Lessons I’ve learned:

Grieving parents do not want to be called strong. We feel like the weakest of the weak. We are only surviving because we don’t have another choice. We know people depend on us. But we often secretly wish we could escape this cruel world and just be with the child we lost. That is a dark secret we all carry. We also want to make our children proud so we press on.

There are certain things we never expect, like things strangers and even “friends” say which can be big triggers. For me, I never really took anything anyone said too personal. I knew most people meant well and they just did not have the right words. Many people do take things very personal. This is because they are hurting. Period. Every emotion is mega amplified. My husband hated when someone would say “I can’t even imagine your pain or what you’re going through.” He wanted to say “No sh*t, of course you can’t!” So please no one say that to Steve, ever. 😂 Kidding/not kidding.

“I’m sorry and I’m here” is usually sufficient enough. 

 

Most people hate when you don’t mention their child. They want their child talked about and remembered, always. Especially by close friends and family. I don’t take this too personal either. It’s just a hard and confusing situation for everyone. No one wants to talk about your dead child at the risk of making you upset or ruin an otherwise happy day/moment. But trust me, every day is a hard day without our children. Mention them. Acknowledge them. It’s best.

 

What I needed, and still need, are for those around me to keep my child’s memory alive. Send me pictures and stories, tell me how they changed your life and what they meant to you. Those anonymous small gifts and gestures that show Mary is remembered touches me the most. And these caring, small gestures usually show up when most needed. That’s God. 

 

Let your grieving friend vent and cry. Let them scream and yell. Let them forget when they need to forget. Don’t offer advice or try to fix their pain. Just be present. Those few friends who would show up unexpected at the hospital at 12 a.m. with a Starbucks, trashy magazine and a hug or come to Memphis to take me on a jeep ride and an ice cream break were what I needed the most. Those that would check in often and understood if I never responded or answered the phone still kept reaching out. This meant everything. I never had to worry that they would abandon me or that having a friend who lost a daughter would be too much for them to bear. The pastor who cried with us and admitted he was also questioning his faith told me just what I needed hear. Which was that we are all just humans doing the best we can. We just prayed and pleaded for God’s help and mercy. Sometimes there are just no good answers. I needed people to be honest and loving and accepting no matter what I was feeling. Just be there. Love unconditionally and stay. Don’t run or hide. Show your loyalty, love and support.

 

There are friends that I had all my life who disappeared when Mary got sick and died. It happens. I don’t hold a grudge. Cancer is hard. Death of a child is even harder. My true friends never left my side. I needed people in my life who let me be me and experience what I needed to experience. I needed to find new legs and have them to walk by my side-no matter what.

 

Here is my advice for the first year after losing a child: Stay in bed if you need to. Attend or don’t attend events. Don’t push yourself. Take a hiatus from work if you are able. Answer or don’t answer the phone. Do whatever you can to keep breathing and to survive. The one thing you are not allowed to do is to give up. Take it day by day and moment by moment. Reach out to others if you need help. Never feel ashamed. The clock will keep ticking and the world will keep spinning whether you like it or not. Start trying to forgive yourself and give yourself the space and grace you need to heal.

 

I did eventually accept that so much was and is still out of my control. I had to let go of the things that I wanted to change and couldn’t. I also know God is real and Mary had a big purpose. He never left me even when I felt very alone.

 

Recently a parent who just lost a child asked me if there was anything these children who died young and suffered had in common. There is one very important thing....Every child I personally knew who died at a young age (especially from cancer) had a special light inside of them. If you ever met one you would immediately see it and just know. Mary Elizabeth was always different. She touched everyone that she ever met. Her unconditional love and understanding of God and His love was well beyond her years. She talked with spirits and had zero fear. Deep in my heart I always knew she wasn’t meant for this world. I didn’t want to admit it but I always knew. I have peace knowing that she chose me to be her mom and to take this journey with her. I have a duty to keep her spirit alive. I was far from perfect but she chose me knowing this. I am a very blessed woman.

 

Steve recently told me a story that confirmed this. Before ME got sick the two of them went on a church retreat. On this trip the new youth minister was in attendance and told Steve that she sensed Mary was a “marked child”. Meaning a child touched by the Holy Spirit. This was so true and she had no idea what was to come a few short months later. I have grown and have a very open mind these days. The universe in massive and beyond our human comprehension. Love is all that matters.

 

I am an open book and my journey is just beginning. I am always here with open arms to help anyone unfortunate enough to be on their own grief path. Grief is fluid and ever changing. I am so sorry for anyone who unvoluntarily joins this club of child loss. But I promise you this, the members of this club are some of the most loving and understanding people you can ever know. No judgements ever, only love.

Please pray over our family as Mary’s birthday approaches. It’s an extra tough one. But I am forever thankful for the blessed years we had with her on this earth. I can’t wait to see my baby again. Every day is one day closer. ❤️



 

Thursday, April 16, 2020

This quarantine has made us all insane. We have tried to find projects and stay busy. We made a garden and planted lettuce, cucumbers, tomatoes and squash. So far only tiny baby lettuce has started to pop up. I am actually not even sure if the torrential rain showers of late haven’t washed all of our seeds away. If a tomato plant starts growing in the neighbors yard then I guess we will have our answer.
In these crazy times we somehow got the bright idea that we needed to have chickens. I think watching end of the world types of shows on Netflix and seeing the actual people of the world hoard like we will run out of food and toilet paper somehow implanted in our minds the need to have chickens. We need eggs daily-so it makes sense. 💁🏻‍♀️We also need milk but I haven’t convinced Steve to let me get a cow-yet. If the world ends we can eat the chickens if need be.. Kidding 😂. Never. This is all if the neighborhood pirates don’t fine us first. So shhhh it’s a secret. I’m working on ways to hide the chickens.
We started doing chicken research and discover silkies. They are the Persian cats of the chicken world.They are adorable, small and friendly. Perfect chicken pets. Of course I had to have one.  After all of this impulsive thinking I found out that everyone in the world also wants chickens. It’s a thing. It’s like the Lysol of the chicken world. Like people are going crazy buying up every dang chicken they can get their hands in. It’s insane.
After doing more research I found a website called “My Pet Chicken”. It’s is a very cute site and has some great information. From there we decided we needed to hatch our own eggs and build our own incubator. This  means no eggs will likely hatch and we will have to just buy actual chicks-if we can find any.
Our eggs came today. If you want a good laugh or cry you can follow the blog to see how this goes...
We have 4 eggs and what is in them is a total mystery. We ordered “fancy chicken” eggs and they can be anything. We hope sillies. We pray to hatch one or two and then cross our fingers that they aren’t roosters. We shall see...this is our life...maybe it’s more entertaining than the season finally of Ozark (so I’ve heard) and almost as insane as “The Tiger King”
Thanks to my good friend who lent me a power saw and nail gun to occupy me. We have used it to create our chicken barn in anticipation of our fancy friends. (Not finished) I have also built window boxes for the playhouse and house, and multiple hideous birdhouses that contain 5000 nails and still fall apart. I am asking for my own set of power tools for my birthday. Wink wink. Creating wood items from scrap wood keeps me outside, busy and more sane than not.
I will not make you anything because these are wayyyy amateur.
We all need to hear about things other than online school and the virus. Enjoy.
P.S. all 4 eggs look different. I really hope they hatch so we can discover what they are. One is tiny and greenish and two are light blue, but different sizes. Eeekkkk









Friday, March 29, 2019

*If you read nothing else today, please read this. And feel free to share! It’s long but important.
D.C. Overview:
I have taken some time to reflect and process everything we experienced in DC. I wanted to share my thoughts and feelings because they need to be shared. I learned so much, some things positive and some not so positive. All in all it was a good trip although it was more emotionally and physically exhausting that I had expected. I gained a lot of insight about how our government works. I also realized how complicated much of the processes are and how time consuming change can be. Honestly it was all very overwhelming. The first thing I noticed was the beauty of DC. It is a bustling town full of history, beautiful architecture and full of learning opportunities like no other. Bring your most  comfortable shoes because you will be doing tons of walking. I am exited to visit again and to tour/sightsee some more. I only regret that I haven’t experienced DC before now. 
The first day with the Alliance for Childhood Cancer was very interesting. We met new friends from GA and all over the country. We immediately bonded upon sharing our stories and experiences both good and bad with childhood cancer. The Alliance includes groups of parents, children, lobbyists and other childhood cancer advocates from all over the nation. Over 280 people from 35 states met with the Senators and Representatives from their state.  We all shared personal stories and plead for new and continued legislation that benefits the world of childhood cancer. 
The current Director of  the NCI (Nation Cancer Institute), Dr. Sharpless, was a featured speaker at this event. He is soon to be leaving this position. If you don’t already know what the NCI is then here is a brief definition: 
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of eleven agencies that are part of the U.S. Department of Health and Human Services. The NCI coordinates the United States National Cancer Program and conducts and supports research, training, health information dissemination, and other activities related to the causes, prevention, diagnosis, and treatment of cancer; the supportive care of cancer patients and their families; and cancer survivorship.”
Basically the NCI is THE government funded agency for all cancers-adult and pediatric. It’s budget fluctuates but it is many billions of dollars a year. You have most likely heard from many childhood cancer advocates that the NCI only uses <4 1.="" 10="" 2.="" 3.="" 4.="" 5.="" a="" about="" accurate.="" adult="" against="" agree="" all="" allowing="" alone="" also="" always="" amount="" and="" any="" anything="" anywhere="" approve="" approved.="" approved="" are="" arer="" argue="" around="" as="" at="" available="" be.="" be="" because="" being="" better="" budget="" but="" can="" cancer.="" cancer="" cancers="" cases.="" cases="" chance="" change.="" child.="" child="" childhood="" children.="" children="" companies="" compared="" completely="" congress="" control="" controls="" controversial.="" controversial="" country="" current="" delve="" depending="" depends="" determine="" determined="" diagnosis="" did.="" die="" does="" don="" dr.="" drug="" drugs="" during="" each="" enough="" equal="" esting="" even="" experimenting="" families="" far="" few="" fewer="" for="" from="" funding="" game.="" get="" gets="" given="" going="" granted.="" grants.="" grants="" happening.="" has="" have="" how="" i="" if="" impression="" in="" is="" isn="" it="" just="" learned="" less="" like="" little="" lot="" low="" made="" make="" many="" may="" me.="" might="" money="" mostly="" much="" nbsp="" nci="" new="" news="" nice="" no="" not="" number="" numbers="" of="" often="" on="" options="" or="" our="" out="" over="" parents="" pediatric="" percentages="" possible="" priority="" profit="" reason="" reasoning="" reasons="" requesting="" requests="" research="" researchers="" run="" s.="" s="" save="" sharpless="" shocking="" should="" so="" span="" spent.="" support.="" support="" t="" take="" testing.="" testing="" that="" the="" their="" themselves="" there="" therefore="" they="" this="" though="" time="" timing.="" to="" told="" topic="" treatment.="" treatment="" trial="" try="" under="" us="" use="" used.="" voice.="" voice="" vote.="" vote="" voted="" want="" was="" waste="" we="" what="" when="" why="" will="" won="" would="" wrong.="" year="">
On a positive note awareness is improving, slowly. Doctors and researchers are finally beginning to accept that childhood cancers and adult cancers are totally separate entities. They are biologically and genetically different. They require different types of care and treatments. 
Most children are born with cancer or predestined to get it, while most adult cancers have an environmental cause or are caused by lifestyle choices. Most children are diagnosed after the cancer has significantly spread while most adults are first diagnosed in the early stages. 
So where  do we go from here? That is the frustrating part, I’m not sure. I have a few ideas but I have to think some more on this topic. I believe as a start we need to begin by contacting and advocating directly with the NCI. Thanks to social media we can easily do this. I personally believe that until childhood cancer affects an authority higher up with some control over research and dollars not much more will be done. A person with power will need to know how it feels to run out of options or nothing much may change and new and better treatment discoveries will continue to happen too slowly. The reality is that most people are  just unaware of the need or don’t  care about a cause until it affects them personally. That is human nature. I believe WE need to keep making our voices heard, keep fighting, keep advocating and sharing TRUE facts until the right person “hears” us. 
We need to change the perspective in this country from $ and numbers to number of years lost. Adult cancer has been given priority and funding for many years. We can always improve and adult research needs to continue but children have been given so little it is absolutely sinful. Most adults have lived a large portion of their lives at their time of diagnosis while the children who die have an average of 60+ years lost. Every human deserves a cure but it is time to make children a national priority. The fact is cancer is the leading cause of death by disease in our children in the U.S. That alone makes it not rare. The rates are increasing, not decreasing and we don’t know why. All life is precious and should be treated as so. Research for children and cures are mainly depended on independent funding from outside sources such as our small “United for a Cure” Fund. 
Day 2 in DC we went to Capital Hill to share our emotional stories, ask our legislators to support new bills and to keep supporting the current bills benefiting childhood cancer research. This was much harder than I had anticipated. I believe because it was an experience I’d never had which is always terrifying. It was very intimidating and in an intimate setting. Plus I am obviously passionate about this topic so emotions are high. Mostly we met with young (20 something) staffers and shared our stories which they will relay back to their bosses. We were able to personally meet face to face with Senator David Perdue and Representative Austin Scott. The good news is everyone we talked to pretty much already supported our efforts and seemed to truly care. They asked questions and wanted information on bills they didn’t understand. I’m not sure if it was this way for everyone but for us that felt very positive. I felt good about our discussions and the support of our law makers. I talk about Mary and share her story often but for whatever reason this time it was extra difficult for me. I hysterically cried in the first two meetings. So much so I wasn’t able to really get out the words I wanted to speak and I questioned if I would be able to continue with the day. I was lucky to have my dear father, Joe Posey, with me to give me strength. He is an adult cancer survivor, currently battling secondary cancer and knows how losing a grandchild feels so he has a very unique perspective. It was equally painful for him to share and it was hard watching him hurt and hold back tears. I was honestly shocked with my own unexpected behavior. I pride myself on being strong and in control. At that moment I was clearly unable to get a grip on my emotions. But I am happy to say it did get easier as the day progressed. I was able to have better emotional stability as the day continued. Another important thing I learned was this...I believe few of us who have gone through the loss of a child to cancer continue to advocate like we do. Or at least that is how it seemed to me. I get why. It’s emotionally draining to remember the pain and to have to relive it over and over again. I have no judgments. How everyone handles loss is an individual process. Maybe the grief is too overwhelming for most (I 100% get that). And/or maybe the parents feel it is too late to save their children so they think, “Why bother doing anything at all? “ Grief can leave you feeling bitter and hopeless for a long time, even on your best days. People often ask me why I do what I do and how I am able to keep fundraising and advocating after such a loss. I think I can also speak for my friend Anna Bozman Thompson (Lake’s Mom) as well when I give my answer. We truly don’t want anyone else to have to lose a child the way we did or to experience the pain we have felt it they don’t have to. It’s literally unimaginable and most days I can barely accept it as my reality. If what we do saves any child and/or makes the journey a little easier for someone else then it is worth it. There are children still living who need and deserve better and many children newly diagnosed everyday who need and deserve a cure. The other part of my answer is that it has to be a supernatural power given to us by our angels. Finding a cure is what they wanted and what they passionately believed in. I remember vividly feeling trapped in the hospital day after day, watching the clock slowly tic away, wishing we were free and able to do something/anything to make childhood cancer a priority. Mary and I spent countless hours talking about fundraising and how we would bring about change. I was eventually able to  leave that hospital...Mary never did. The burden then fell on me to complete the mission for her. I have no doubt she is walking right beside me and sometimes carrying me along the way. Anna had to hear Lake ask her if he was going to die. She said what needed to be said and remained positive but she will never forget seeing in his eyes that he just “knew”. Lake knew in his heart that he wouldn’t survive this relentless disease. Mary asked me the same thing. I remember not really knowing how to best answer her. I also didn’t want to be dishonest so my answer went something like this, “All I know is that we are going to do everything in our power to not let that (dying) happen.” I believe we kept our end of the bargain. We tried literally everything  that was available to us. We never gave up hope until Mary took her last breath. I remember telling myself “If she is still alive then we still have a chance”. That was a lie I told myself, in all honesty she never had a chance. The problem was there weren’t enough options available and there never has been. We ALL let her down. Her parents, her family, her community, her nurses, her doctors, researchers and our nation failed Mary. No parent should ever have to tell their child they might die. No parent should have to realize there are no more options available to save their child’s life. Our greatest wish was to have the power to trade places, but even that was not an option. At the end of our one and only conversation about death Mary said, “Well mom, if I have to die so that others can live then I am ok with it. So many of my good friends are already in Heaven anyway.” I remember hearing this and fighting back tears so I wouldn’t look weak and cry in front of Mary.  I told her, “Well I’m not okay with it. Let’s just stay positive.” I’ll never forget that day as long as I live. This was one conversation no one can ever be prepared for. I now believe Mary was right. If she had lived I have no idea how we would be functioning in this cause. Maybe we would have tried to give her as normal life as possible. Maybe we would not be as involved in the childhood cancer world because it is too painful and sad. Her life had a much bigger purpose. She has done so much more in death than she ever could have in life. She shared the real, the raw and the ugly truth of childhood cancer. Thousands followed her story and she taught them what true love and humility was all about. She was good and kind and sweet and humble and faithful and she still died. It didn’t make sense and it wasn’t fair but life isn’t fair. Her death is proof of that. Because of Mary’s story many people realized too many children die from this horrific disease and how devastating it really is. We can be bitter and angry but nothing will bring her back. She showed us what childhood cancer is all about: nondiscriminatory, painful suffering and that it is just plain evil. Childhood cancer isn’t cute smiling bald heads with a 95% cure rate. It’s not even close. Cancer destroys lives and families. Mary wants me to tell the truth. She wants people to know that many kids are still dying everyday. The treatments are brutal and often leave surviving patients with life long chronic conditions. It shortens their life and can create a lot of emotional turmoil and chaos. Children should not be treated in the same way as adults. They need 100’s of drugs available to them, not only a handful created specifically for children. They need better research that has advanced and not become stagnant over the last 30/40 yrs. They need less invasive and damaging treatments. They need targeted therapies. They need a fighting chance. Cancer research funding should be divided 50/50 for children and adults. That would be fair and right. I will keep speaking up and speaking the truth until my dying day. Hospitals need to quit skewing survivor stats for their advantage. A survivor is considered any person who is still alive after 5 yrs of diagnosis. This makes no sense at all. Many kids are still in treatment after 5 yrs. Many still have cancer and many die after 5 yrs and one day. Many die a few years later from the complications of treatment. Some get secondary cancers from the treatments. Their death certificate won’t say “cause of death-cancer”. It might say “Cause of death-liver failure, heart failure, pneumonia, etc. “ THIS IS NOT SURVIVING. 
As long as there is an ear that is willing to hear the truth and willing to become aware I will be the voice for Mary and every other child suffering from cancer. 
Our dear friend Robert is considered cured because he has been in treatment and surviving after 7 yrs! He has battled cancer over half of his short life. He has missed out on fun, important events, milestones, school and the ability to just enjoy being a kid. His family was recently told the cancer is back with a vengeance and there are no more options. Zero. His family can now only pray and hope for a miracle. I’ve been in their shoes and I know exactly how helpless this feeling can be. He was originally diagnosed with ALL and given a good prognosis. His family was told Robert had the “good kind of cancer.” If you hear nothing else please hear that there is no good kind of cancer. I want to help them but I feel helpless. We haven’t done enough. Not even close to enough. The evidence of our failure is right in front of our faces and in the face of sweet Robert and so many others. This message I am sharing is the TRUTH. I ask you to read this message, share this message, be willing to do more, write the NCI and your legislatures and tell anyone who will listen this TRUTH. Be a loud resounding voice for our kids. “Fight with M.E.” 
I thank you and Mary thanks you. 

*Be Brave



Tuesday, February 5, 2019

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 

Tuesday, January 29, 2019

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. 

Wednesday, January 9, 2019

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.”



Thursday, September 13, 2018

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