Rogue

Going Rogue...
We saw Star Wars Rouge One over the holidays. I was really excited about it (If you haven't seen it and don't want a spoiler quit reading now). I love the Star Wars movies and have since I was little. My bestie Billy Kitchens and I watched every movie when we were little and had probably over 100 characters. He had some other awesome play model pieces including the Millennium Falcon that I am sure his mom still has stored somewhere safely. I loved Princess Leia as I know most girls my age did. Double hair buns were a very popular hairstyle for most every 5 year old girl I knew. But this particular movie was a disappointment to me. First of all it was confusing with all the new characters and most all of them die at the end. What the heck! The effects were not amazing to me even on IMAX 4D. With that being said, I am not a professional movie critic. I am just one fan and this was definitely my least favorite Star Wars installment. But as I was sitting there all I kept thinking about was how the fighters of childhood cancer had many similarities to the rogue fighters in this movie and this would make for a good blog topic. First of all we feel like rebels in a world that seems to be constantly fighting against us. Trying to change things and the battle to make things better just seems so fruitless at times. But like the big line in the movie states, "Rebellions are built on hope." we tend to feed off of hope even when beating the childhood cancer beast seems almost impossible. People don't listen or seem to care. Very little $ is given to this rebellion, we are exhausted, fighting with only hope sometimes but we are a small band of fighters who know no other way. Bad things constantly happen.  More children are diagnosed daily, children die everyday and everything seems to go against us. We fight with all of our energy just to be wounded and beaten to see too little progress.  Eric Trump stepping down from his fundraising efforts and foundation which raised tons of $ for childhood cancer and St. Jude is disappointing to say the least. He ran his foundation the right way with little cost and raised millions. The top of the line ICU he funded was helpful in saving Mary's life many times. But I have to hope. Hope for a bigger plan and purpose that we won't lose in the end and many innocent lives will be saved because of our unseen efforts. We can't give up, the price of giving up is too big. Maybe there will be more education now because of the attention this has gained and notice about the need for research and funding will be gained. And maybe Eric will find a way to keep the foundation going or do something even bigger and better. I hope.
On another note/rant the real life Princess Leia, Carrie Fisher, died on Christmas. It's sad-yes. Then a couple of days later her mother/actress, Debbie Reynolds died. Even more sad-yes. People are going crazy on the internet about the celebrity deaths and all and it irritates the sh*t out of me. Literally what great things did Carrie Fisher do???She lived a long hard life. I would give anything to see Mary have the chance to live 60+ years. And her mom was 84 people!!!! Where is the outrage over seeing innocent children die and suffer beyond belief because no one in 40+ years has done enough or cared enough or given enough $ to cure childhood cancer. These children have been ignored and thrown away. That should be the outrage.  People are saying Debbie Reynolds died of a broken heart. Seriously? I am sure it was awful burying her child, I know first hand. Imagine burying your young little innocent baby. My heart is literally torn in two. But me and all my other mother friends in this horrible club have to go on. We don't get the chance to die of a broken heart. Instead we live with our broken hearts every moment of every day. These celebrity news stories irritate me how people flip their lids over celebrities they don't even know. My perspective is forever changed and I guess I just have to HOPE and pray some more people will join our rebel rebellion and go rogue with us. And eventually wake up to reality as sad and difficult as it can be.
Go Rouge and give here before the end of the year:
www.curechildhoodcancer.org/united
Http://cog-foundation.networkforgood.com/projects/18979-target-pediatric-aml

Christmas 2016

Christmas 2016 🎄🎁🎅🏻
I survived...barely. It hurt and was hard and even harder than I imagined. I made the mistake of watching a video that popped up in memories on FB and it put me over the edge. It was of Mary and the kids on Christmas morning back when I was naïve to childhood cancer. Sometimes I feel like the cancer was all just a horrible nightmare and I can still wake up, but I never do. Well, I lost it and cried in the middle of present opening and tried to hide the tears. It didn't work.  Whit looked at me and said, "Can we try not to be sad this year?" Maddy looked at me worried and said "Are you ok?" I nodded my head and choked back what I could. Sadly I don't think I can ever "Not be sad" or will ever be "ok". But I really didn't want to ruin their Christmas morning or tarnish their happy memories. After present opening, when the kids were busy with their new gifts, I got back in bed. I pulled the covers over my head, cuddled with a cat and just finished getting my cry out. Steve came in and said he was sorry and asked if I got what I wanted for Christmas. "No." was my response. And he said he didn't either. I will never get my Christmas wish...ever. But on a happier note the kids were beyond spoiled and loved their gifts. I just want them to be happy. For me there will always be one empty stocking too many and an empty space on the floor with missing presents. The lost excited squeal, laughter and smiles of a 12 year old stolen by cancer will be forever missing. Steve did get me Pappy Van Winkle bourbon, something on my bucket list to try.  Maybe it will literally get me through the holidays. Kidding. I know in truth nothing will. We decided to stick to the usual family traditions this year although personally I would rather be away at the beach and distracted.  But I learned the hard way that tradition is what the kids crave and need and so I must do what is best for them. They like and miss the traditions we always set for the holidays-I guess routine is what kids crave. It makes sense, they have had so much pain and change in their lives and I am sure it is reassuring to have a plan and know what is coming next. They wanted to go to church on Christmas Eve like we always use to and the happiness on their faces was undeniable. Making cookies and cooking with Maddy made her content. Opening the traditional one present on Christmas Eve and knowing it was PJ's brought lots of laughter. Watching old Christmas movies before bed and drinking milkshakes made their hearts smile. Spending time with family and exchanging presents made the kids feel content and loved, so it was worth it.  Seeing my friends hurting and in the hospital also fighting this relentless beast only makes me sadder and angrier no matter how hard I try not to think about it. Thinking of my too many other friends feeling that huge missing spot aching in their heart makes mine only hurt more. But I look forward to 2017 and hope I can find more happy days this year, be more productive and also be a better wife and mom. Of course on the list is being more active and losing a few more pounds as usual, but mainly I hope to just smile more. I also want to see my family smile more and just be successful at life.  I wish the same for all my family and friends. It's a new beginning which is always a nice thing.  Sometimes we all need a "do over".  Here's to a better 2017🍾.

www.curechildhoodcancer.org/united

HOPE

Christmas hope...
Definition of hope
hopedhoping
* intransitive verb
* 1:  to cherish a desire with anticipation
* 2 archaic  :  trust
* transitive verb
* 1
:  to desire with expectation of obtainment
* 2
:  to expect with confidence :  trust
hoper  nounhope against hope
* :  to hope without any basis for expecting fulfillment


Maddy asked me if we were going to church for the Christmas Eve service this year . I told her "yes" and she was just so excited. It is a Christmas tradition but it also obviously means a lot to her. I have to confess that although we love our church and they have been nothing but accepting, loving and supportive of our family during this difficult time we have pulled away. It is wrong and unfair and mainly unfair for our children. I can make many excuses and say "We live too far away, it's very inconvenient." But in truth I think there are other more "real" reasons. We have been back to church since Mary passed on a few occasions and all the many wonderful memories flooded in and I started to break down, feel embarrassed and raw. I emotionally can't do it. Part of it is that deep down I feel God failed me and I don't want to enter his house right now. Some of it is that maybe I am embarrassed and ashamed of myself and I just don't want a reminder of the failure I have been dealing with my faith. But when Maddy asked me this question I had to start to mentally prepare for the visit. If you have ever been to a Christmas Eve service at RUMC it is more than just a service. There isn't anything particularly different or special that they do. In fact it is probably similar to the thousands of Christmas Eve services around the world. But there is something truly magical about it. I think it is the honesty, true love and grace you feel filling the room. I think just about anyone who has been will share this same feeling;  it is so strong and undeniable. When we were in the hospital missing this service many friends sent me messages about the hope and spirit they felt on Christmas Eve at the service and I was always so grateful for the pictures and the mental reminder. My heart longed to be with them actually seeing the candle light on my children's faces again...all three. The message is always the same, but the magic never fades. At the end of the service as the congregation lights a candle one by one I would often gaze at my perfect, beautiful children as the candle light hit their face just right and the glow made them look like literal angels as they sang. The most wonderful spirit of peace would fill me. It always brought happy, joyful tears to my eyes. The message is always about hope. The reassurance that there is hope when all seems lost. Hope for a better tomorrow and hope for our world no matter how broken. And hope for me no matter how broken. I am reinded that many times in history all hope seemed lost, but it wasn't. Many Christians were lost and found.  Jesus brought hope to a broken world and still does to broken people. So we will go and I will still be an emotional mess. We will be missing an angel and a part of our heart. I will try to absorb the message and believe again in hope.  Without hope there really is not much to live for. I will look forward to a new year that I pray is filled with lots of hope and happiness.

Jeremiah 29:11
“For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.”
Revelation 21:4
“And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”

J

www.curechildhoodcancer.org/united

A piece of my soul

A piece of my soul.
I told myself I was going to cut back writing too many sad and depressing entries after having several people privately reach out to me that they were worried about my mental health. I didn't want people to worry so I thought I would try to be more uplifting. Then I realized although I 💯 know these people have the best intentions in mind they also don't really know me or see me on a regular basis. They don't see me functioning and surviving in my daily life. When I asked close friends and family if they had these same concerns they assured me they didn't. Then I also realized this blog is for me and for those who might also be hurting and need to know they are not alone on this grief journey.  I have to be me and I have to be real and this is my therapy, so I will just continue to write as I feel I need to. But please understand as you read this that these are my feelings on a particular day or in a particular moment and not me ALL the time. And I also assure you that if you have lost a child you would most likely feel the same. Again, these feelings are "normal"-whatever the heck that means. With that being said...
I am dreading this next week leading up to Christmas so badly. I am trying, really trying to stay up and positive but it isn't working. It is exhausting being sad and lonely and grieving all the time. I know the kids will be in school, I don't have a lot of activities planned and I know it is going to be hard to keep myself distracted and not fall into a dark place. I had this realization as to why this pain of losing Mary is so big and feels bigger than me a lot of the time.  This realization doesn't help me fix it but it helps me understand it. I think people come into this world needing things to fill them up. Sometimes they get these things and sometimes they don't and this creates the human being they become. They need things like love, nurturing, comfort, acceptance, understanding, etc. All of these  things are needed to complete them and I would venture to say what completes a person beyond their basic needs is different for everyone. For some it might be success at a job or world travel or making new discoveries and so on. For me I wanted a child, to be a mom and have a family of my own more than anything. I felt it truly was my life purpose to be a mom. It took a lot of hard work and it was a journey but when Mary was born I felt perfectly whole.  She actually filled up a missing part of me. My soul felt complete finally for the first time in my life and I felt at perfect peace. Of course having more children made my life even more complete and they were an added bonus. They were equally as special. But when I lost Mary I now realize a piece of my soul was literally ripped away. Now it can't be filled or patched up and it literally hurts to have it missing. That is the best way I can explain it. She completed my happiness, she was my best friend, my soulmate, my comfort and my perfect piece in every way. There is actually something called "soul loss". It happens to people who are extremely neglected or abused or have experienced horrific tragedy.  I have all the symptoms and there are supposedly  "Dr.s" and others out there who can try and diagnose and fix you. So I don't think I am crazy, apparently it is a real thing. I googled it 😊Since Mary has been gone I think I have tried to fill my missing soul piece with many things...none of them fit. Some of the things are anger, sadness, loneliness, confusion, distractions, projects, etc. I think I know nothing is going to fill this hole because nothing can replace Mary. I won't be complete until we are reunited one day. I see a picture of her or watch a video and for a fleeting moment and for a few seconds I can feel her with me and I can almost fill that hole. Sadly it doesn't last. I wear her jewelry, sleep with her stuffed doggy, wear her clothes, but it doesn't fill the hole. Yes, I know many will say "God can fill the space." Maybe. I hope so. Eventually. He gave me Mary and He took her away and I hope He can heal me. I do. But I don't know if a damaged soul can ever be completely healed here on earth. I just ask those around us to pray for us during these hard times and to keep being supportive. I feel the kids and Steve have these same feelings and maybe don't even realize what these feelings are or why the pain is so deep. I ask for grace and understanding in our pain. I am not sure how I am going to survive it.  I probably won't always behave or react how you want or expect, it is because I don't know how I am suppose to behave and react.  There isn't a handbook. Sometimes what things look like on the outside is a lot different than what is going on on the inside. Our faces might have smiles and you might see happy pictures but inside our hearts are hurting and our emotions are all over the place. Please don't take my behavior as personal, it is not. I feel different day to day and sometimes minute to minute. It is how I am coping and navigating this mess, right or wrong.  I don't think there is a right or wrong way.  If you are overly sensitive or have low patience then we probably can't be friends. It is fine. I won't take it personal. My reactions are also not a reflection on you or our relationship. This is a new me and I am forever changed and I don't understand myself some days. It is truly me and not you. I hope one day and I believe one day I can be strong for you when you need it and this will make me a stronger and a better person even if I feel weak today.  If you care about us and want to help you can do this: Please remember Mary this Christmas. Talk about her and help us make her life matter. Remember the families fighting cancer and other childhood illnesses this Christmas.  Pray for them and support them.  Be thankful for your blessings. Just be present and available.  It means more than I probably express. I wish I had answers for my too many dear, hurting friends-I don't.  But what I can do is grant understanding from one broken person to another.

www.curechildhoodcancer.org/united

Judgements

The only thing worth stealing is a kiss from a sleeping child.

- Joe Houldsworth

Judgements: I hate them. I hated them the most when I was a new mom. I tried to be the best new mom I could be. Mary was born and for the life of me I couldn't breastfeed. Every specialist in the hospital available came into my room and every time they left me in tears. One even visited me at home without success. Mary wouldn't/couldn't latch on and I feared the tiny thing would just eventually starve to death. She was barely 5 pds when we left the hospital and miserable and losing weight every second; at least that is how it felt. I started pumping breastmilk every few hours around the clock and felt like a mamma cow, but I would do anything to give my baby the best. Breastmilk was the best, just ask any "expert" right?!? If so, why was my baby vomiting and screaming and still losing weight!?!Eventually I learned some babies can be allergic to breastmilk. Yes, it is true. And this was Mary. I felt like a failure. But at this moment I wanted my child healthy and happy and who cared if she drank breast milk or formula. Happy was the key. Then the sleep issue came into play. Mary NEVER slept. I am not even halfway kidding you. Mary slept peacefully maybe 20 minutes at a time. I read all the books written by the so called "experts". She would sleep in the swing for longer periods but this was not what a "good mom" would do...right? Well, letting her sleep in the swing kept me halfway sane-so she slept in the swing most of the first year of her life while drinking the most expensive formula on the market. She was allergic to everything else, including breastmilk-who knew???!!! (FYI-Drinking breastmilk also doesn't prevent cancer) Eventually we put her in a crib, which she hated and I tried to let her "cry it out"...it was the "thing to do". That lasted about 30 minutes. This was pure torture for me and I couldn't physically take it. It felt wrong and ridiculous and I just couldn't do it. I didn't care what the stupid so called "experts" said. I read every book and tried every method. Nothing worked. They had been wrong before and none of them had met Mary.  She was unique to say the least. Happy was where it was at. For Mary happy meant a trundle bed or mattress on the floor and a gate on her room door. That worked well enough and = happy enough. It also meant a monitor ensured her safety, a snack and TV on her bedside table kept her quiet and mommy maybe got a nap, a shower and gained a little sanity. Take that stupid experts! And those "Baby Einstein" hypnotizing videos were pure genius!!!! 

Eventually happy meant our kids sleeping in the bed together and us laying down with them until they went to sleep. We still do this today. Yes Maddy is 11 and Whit is 9. People may judge and people may think it is because they have been through tragedy and they need it, but I think we would do it anyway. We always have regardless if it was the thing to do or not. Sometimes I admit I want them to just freakin' go to bed and let me have 30 minutes of reality TV and some peace, but most of the time I enjoy the 30 or so minutes of quality time with my kids cuddling in bed. I love smelling them, holding them, listening to their fears, their questions, the good/bad parts of their day, watching Bat Dad Videos or Bad Lip Reading Videos and laughing, and more recently Steve and the kids have discovered Ant hill metal art videos??? I also realize my sister and I slept together our whole life even through we had separate bedrooms until I left for college. I guess it seems normal for me and it is something that won't last forever. One day my kids won't need me so much and probably won't even like to cuddle. Even though Whit promises me this will never happen I realize that one day it will. I read the attached article today and it made me feel so much better. I think instead of ever feeling like a failure at life or listening to the "experts" I learned the hard way to go with your gut. Go with what works for your family and what makes your kids happy. I am glad we do/did what works for our family and didn't follow the rules. Every family and child is unique and I will forever treasure my moments in bed talking with Mary, our cuddles, our books, our secrets and the time I can never get back. In fact the last moments of her life I spent in her hospital bed just holding her, taking in her scent, touching her skin, trying to remember her every freckle and curve knowing it would soon be gone from me forever.  Laying with her was something that felt natural because it is what we always did and something I can't do anymore and I miss it everyday. I often imagine her back in my bed as I drift off to sleep and it gives me some peace. So treasure those moments and don't rush them, they will be gone before you know it. 

http://www.scarymommy.com/lying-down-with-your-kids-until-they-fall-asleep-is-not-bad-habit/?utm_source=FB

4% is not enough!

What can we do to make the necessary changes for our children fighting cancer. We know 4% IS NOT enough! I write letters and emails and they go something like the letter below. Many talk but WE need to know how to take ACTION. I have researched and I have to admit I stole this very doable idea from several reliable sources. It seems likely that it can work. Baby steps to get to the bigger CURE. I believe if we can cure cancer in our children we will also cure cancer in adults. Childhood cancer is not the same as adult cancer and this is a fact people need to understand. We know what causes many adult cancers. Many times the cause of adult cancer may be environmental and sometimes they are preventable.  This is not the case for childhood cancer. At the time most childhood cancers are diagnosed 80% of the time it has already spread; this is unacceptable. It is time for things to change. I hope you will join in the fight with me. Feel free to change the following letter to best fit your needs and send to your local legislators. Let's spark a change!

To Whom It Might Concern:

   I am a parent of a child in Heaven. I know this isn't necessarily unusual, many people are like me. Many people have children no longer on this earth and they also believe their children should still be here just like me.  But what is different is the fact that I believe we were cheated by our government, our lawmakers and our medical institutions. I believe if our children's lives were given importance and made a priority then maybe my beautiful Mary Elizabeth would still be here alive today. 

     These are the facts: The National Cancer Institute only allocates approximately a mere 4% of its entire federal budget to children. That includes all types of childhood cancers into that budget. The most common childhood cancers will get the most funding, therefore the "rare" types such as my 12 year old daughter Mary had (AML) gets almost 0% of the funding included in that budget.  This even though approximately 500 children a year are diagnosed with her type of cancer in the U.S. every year.  It is left up to private organizations to raise money to fund research studies for these children. Some types of childhood cancers such as DIPG still have an almost 0% cure rate at diagnosis. This is absolutely unacceptable.

     What I would like to ask from you is this, I would like to ask you to lobby for more funding for our children from the NCI. Just 1% more. 1% more can do so much.  It is just a start but it is also a beginning to bring about needed change. This amount would open up approximately $50 million dollars a year gain from the NCI budget. That opens up that much more opportunity for investigators to gain funding for new trials and research. 1% is probably not enough but it is a beginning and you have to start somewhere. Any little bit helps and makes a difference and saves many lives. 

     Where is the money going to come from? I believe it can come from removing a small percentage across the board along the lines of each cancer type funded.  This would add up to a single percent in a short amount of time. I am aware that other cancer lobbyist will be resistant to change but I would like to argue this fact-how could taking a small amount of money from your much larger budget in order to help children dying of cancer be negative to your cause? I don't believe the NCI budget would not be dramatically altered for any single sub-disease by changing the proportions in such a minimal manner?

    Now, what do we do with the money? We open up more childhood cancer specific research grants across a broad collaborative of researchers. The NCI could increase the projects that they currently fund on their own campus while also encouraging outside researchers to apply for additional funding for projects that they are currently unable to execute due to lack of support. This can in turn benefit those "rare" cancers like my Mary had that desperately need more funding and progress. 

     When you hear there is a cure relate of "80%" for childhood cancer this is extremely flawed for many reasons and doesn't take into account all the many other statistics that come into play. Such as how little progress has been made in childhood cancer in our lifetime, the toxicity of cancer treatments, some cancers still having a 0% cure rate. 75% of childhood cancer survivors have significant medical complications from treatment, and an only 5 year survival being considered as cured. Children are our future and should be treated at such. They deserve much better. 

        Sincerely,

  Amanda S. Pariswww.curechildhoodcancer.org/united

Happiness...

Happiness. What is it? I think I know. I know it when I have it. It is more elusive these days and I try to hold on to it when I find it. I feel like I often write about things that are depressing and sad. That is how I feel a lot of the time...it just is. People worry about me because they think I am too sad. Grieving Mary is well, depressing. But there are things that make me happy, very happy in fact. It is not constantly doom and gloom in my head.
I am happy for the 12, almost 13 years of life and love Mary gave all of us. And I am beyond happy that she made me a mom for the first time. She was the best, most valuable gift in the entire world. The only thing I ever really wanted to be. The only thing I ever dreamed about being.
I am happy about the awareness of pediatric cancer Mary's story brought to the masses and the catalyst for change that her story has sparked.
I am happy that I have another sweet and amazing daughter whom we call "Maddy" or "Mad Dog".  She is beautiful and tough and determined. She is full of self confidence and charm. She is definitely a spunky fashionista and my "Mini Me". Maddy is in the throws of preteen drama but it keeps life interesting daily.  She definitely  knows what she wants and goes after it.
I am happy and proud to have the opportunity to raise a son and a son who is amazingly talented. He is artistic and really intelligent. He is, of course, adorable and he has the sweetest cheeks and gives the warmest hugs. He is funny and charming and proves it true that "boys just love their mamas." There is nothing better than having a boy who adores me and there is something extra special about that.
I am happy to have a husband who protects our family and who stood by and fought valiantly when Mary was so sick. He loves me no matter what and thinks I am beautiful when I am a mess. He wants the best for us always and it is his #1 goal. He allows me to be a stay at home mom and I am able to be creative and try to be the best mom I know how to be.
I am happy we live in a wonderful community of amazing people. It is the perfect place for us and I hope we never leave. (Unless we one day move to the beach 😉) The support and love and friendships we have made here can not be replaced or praised enough.
I am happy I have the family I have. My parents worked hard to give me a great life. I would almost venture to say is was close to perfect. I have memories of growing up happy and content. We lived in a perfect neighborhood with tons of kids and friends. I was free to roam and ride my bike and stay out until after dark. I always felt safe and very loved. Although we were not a wealthy family we had a lot of love and laughter. We are a very close family and I talk to my mom daily and my sister almost as much. Even my dad is a pretty good texter. My parents worked hard to provide for us with the necessities of life and more. At the time I wasn't able to fully comprehend their sacrifice.
I am happy I grew up unaware of cancer and difficulties and the injustices of the world. I was able to just be a kid and be happy. I always wanted to give my children the same. And I think I have.
I am happy to live in America and thankful most people I encounter are good and kind.
I am happy I am free to do what I want and travel and grow as a human.
I am happy for my church and religion. I am happy to know God and learn faith. I am thankful God is forgiving and never leaves me. I am grateful for this blessing and knowledge.
Of course my list could go on and on. But these are the main thank you's and blessings and things I am happy for.  I encourage you to also count your "happiness" when feeling down. It helps.
P.S. Cats, the ocean and butterfly kisses also top my list of HAPPY THINGS 😊

Today I choose life. Every morning when I wake up I can choose joy, happiness, negativity, pain... To feel the freedom that comes from being able to continue to make mistakes and choices - today I choose to feel life, not to deny my humanity but embrace it. Kevyn Aucoin

Be happy for this moment. This moment is your life. Khayyan