The second worst pain

I’ve been struggling the past few days because my heart is in pain. Yes, it’s there everyday on many levels but I realized again this past Friday how intense the pain of loss is. In this case, it wasn’t the loss my family endured in losing Declan. It is the knowledge, no the heartbreaking knowledge, that another family is traveling the path my family is. I learned of little Casey Kropf’s passing from another dear friend who has lost her son to cancer. We became friends through our experience…her son, Wade, and Declan and Cole were born 2 days apart. Declan and Wade were both diagnosed with brain tumors about a month apart and they died 45 days apart.

I knew Casey was in hospice. I could reason what that meant but I wasn’t prepared for the pain I would feel in learning of his passing. So soon…too soon. Mind you it’s not that I don’t feel the pain for each child I learn has succombed to cancer, because I do, but Casey was different. Casey roamed the same halls as Declan, was treated by the same nurses…in VA as well as Houston…shared the same rare cancer, AT/RT. While I was never given the pleasure of meeting him personally, I felt the kindship you can only build with someone who walks the same path you have walked. His Mom and I have “chatted” over email and via text but due to circumstance have not met face to face. Funny, I’m really close to a few people I’ve met along this journey with Declan whom I’ve never actually met. I love them just the same…and I love their children, dearly.

So what is the second worse pain I refer to? It’s the pain of knowing someone you care about…someone you have prayed for…someone you wished so many things for…prayed for as hard as you prayed for your own child, has died. The second worse pain to watching your own child die is to learn of another child; to know someone else is now walking the same road you walk. To know they are learning about life in a way you yourself never in your wildest dreams thought you would come to know, and certainly not after a long hard road like cancer…all before your child can speak his first words.

It’s a crushing pain. Made more painful by the fact that you can’t do anything to alleviate it but know all too well the nights ahead. You pray fervently for them and all those around them, for peace. And then you think about your child and their child (and so many others)…at peace. A peace you would have given anything to give them here on earth. The welcoming smiles they must share with each other. The knowing embraces they share. And you think this should give you some comfort and on some level it does but in this case…I’m mad…I’m sad…I’m heartbroken. Heartbroken that another family has lost a child, a sibling, a grandchild, a nephew/niece. Understanding all too well, the second worst pain.

Unprepared…

Last night I struggled…

Getting to sleep because my mind was racing…

Considering the tremendous impact of pediatric cancer…

How it has changed my family and the lives of so many others…

How so many more will have to deal with our same loss if attention isn’t brought to this issue…

How our country and it’s citizens have rallied when the appropriate attention was given…

When 2,976 lives were taken on a day in the fall of 2001… We came together, we fought, we invested, songs were written and we vowed “never again”…

When 32 lives were senselessly taken at a University campus in South-Western Virginia in the spring of 2007… the University, it’s Students and it’s Alumni came together to honor them and continue to honor them to this day… everyday… the t-shirts, the bumper stickers/magnets, the websites are everywhere… “never forget”…

When the #1 killer of children in our country is automobile accidents… We invest in research, safety and awareness… we make laws and enforce them!  We should!

When the #1 disease killer of children in our country is cancer… When 2,555 Mommies and Daddies bury their children each year… When 7 children (with their parents holding them so tight because they don’t want to let go) gasp for their last breath every single day… Most pediatric cancer research studies are never funded and as a result ONE new drug is developed over the last 20 years.  UNACCEPTABLE!

WHY? – It hasn’t been given the appropriate amount of attention/funding and most people don’t know that this is the case!  I didn’t.  If people knew that this was our predicament… that children were dying and there was such little funding… in my heart and my soul I believe we would rise up… we would rally for our children… just like we have for so many other things.

How? – Through word of mouth, Facebook, email and by supporting fundraisers, campaigns, etc that support this needed funding.  We need leaders in every community (your church, your state, your town or your city block). Leaders that will stand up and speak out, organize, etc.   Journey 4 A Cure has/will continue to organize events to raise funding/awareness but we also want people to take it upon themselves to do what they can… big or small.  We’ve had children set-up lemonade stands and we’ve had others organize larger local events (moon-bounce fundraisers, Coins 4 A Cure in schools, races, pancake dinners, bake sales, etc).  We are happy to do all we can to provide literature, logos, etc.  The bottom line is that we can all do a little and if everyone does a little… this will add up to a lot… certainly more than we are doing today!

I struggled last night because while I was reading a bedtime story to Brady (our 4 year old), I heard a sniffle and looked over to see his eyes filled with tears.  I said “Hey buddy… what’s wrong?” and he replied “I miss Declan.  I miss my baby brother.  Why can’t we see him anymore?  Why won’t he come back?”.

A question a child should never have to ask and a question I wasn’t prepared to answer.

Too Many Thoughts

I have spent the past few days swimming in my thoughts. Yucky thoughts. Not negative just yucky. It’s so hard to put my thoughts down these days in any clear way. I have so many things to write about in my head throughout most days…our life without Declan, our new life…but then at the end of the day they just fall away. I get frustrated when the “right” words don’t come or I can’t recall them in just the perfect way I did earlier in the day so I retreat away from my thoughts. (In case you’re wondering, the Scrabble app is a fantastic way to escape whatever it is in your head that ails you.)

Tonight I found myself battling these thoughts again and thought I would try to make sense of them. Although I firmly believe I will spend my life trying to come to terms with our life from March 9th, 2010 to August 18th, 2010 and beyond. I actually think I’ve engaged some of those “lesser” used areas of our brains in the countless hours I’ve spent grappling with all the events of our life since March 9th. On most nights I wish those ‘newly lit’ parts of my brain would be filled with the daily reminders of a life with little boys…skinned knees and giggles or temper tantrums and tearful “I’m sorry’s” or new accomplishments and boastful parental smiles…and they are, I mean who doesn’t revel in the day to day with their kids? But our lives will forever be viewed through the tempered glass of grief so those nights are also filled with the memory of a life of horror we lived in the 5 months and 9 days leading up to August 18th and the horror we still grapple with today. The memories I wish I could turn off because of the pain they meant to my husband, my boys, our family, friends and most of all, Declan. The memories I cherish because they are of our son. My God, the love you have does not fade in any way shape or form…maybe that’s why it hurts so bad?

So the thoughts are there, all the time. When you ask how I am and I tell you I’m fine, I’m not. I won’t ever be. I’ll be good enough and will live as full of a life as I can lead. I will, and am, enjoying the life I have with as much gusto as I have (and I have a lot!) because I love my family and want nothing less than the best for them. But I will always have that piece of me that feels missing. It really dances in front of so many of my thoughts. In many ways, it causes pain but in many ways it helps me to truly live in the moment and enjoy it for every smile I can wring out of it. So back to these thoughts over the past few days…again, there are so many…and I’m not sure I have the capacity to share them all but I felt compelled to write after I read a blog my neighbor and dear friend, Kiran Ferrandino, wrote titled simply ‘Broken.’ (http://www.masalachica.blogspot.com/) She’s a great writer, do yourself the favor and read her blog. She has an amazing way of capturing the moment. Kiran’s post affected me on so many levels because I remember those carefree days and all those plans we wistfully made for our babies (we didn’t know we were cooking boys…we like to be surprised in the delivery room) while we sweltered together in the summer of 2009. BTW, Kiran, you’re a rockstar in the pregnancy department…I don’t know how you mustered up the energy to cut through the jungle of humidity to come sit with me knowing at any minute you could black out. Really. I guess Shaila and Brady had a little to do with that, eh? :) Ah the plans…

I get caught up in my own little world, as much of us do, and I forget about the lives of those around us and how their lives become intertwined with our own whether we choose to or not. Our life, Declan’s life, became intertwined in so many hearts and I forget that. I can appreciate what it feels like to sit on the sideline and watch with horror as your friend goes through unspeakable things with their child because I’m sitting on the sideline now…hoping and praying, as so many of you have for Declan, for my friends and their children, hanging on for the next blog to see how they are. Is their treatment working? How is their child faring? Reading between the lines and crying for the parents because I know all too well how truly difficult it is to sit with your child going through this nightmare. Trying to catch a glimpse and wondering what I can do to help besides my ever present stream of prayers for those I know and those I will never know.

Again here I sit losing my thoughts…not knowing where I’m going and hoping to make some sense out of all this.
Trying to figure out how to console my friends whose pain for us is stifling…

Trying to figure out how I will keep my son “alive” in our family…just in case you thought that sounded strange, not in any weird way just part of the day to day….

Trying to figure out how to keep regular visits to the cemetery in our new routine….

Trying to figure out how to make up to Stan for the fact that he will never have a Father’s Day with Declan. This one is one that I have really been struggling with. It occurred to me yesterday, perhaps while Stan was off on his visit with Declan at the cemetery, that they were robbed of the opportunity share a Father’s Day together. In many ways, it was his desire to be the best Daddy which kept him away from Declan last year. While he did spend the majority of the summer in Houston with us while Declan received treatment, he also traveled back home around Father’s Day to be there with Will as he graduated from 5th Grade (our radiation trip began 3 weeks before Will got out of school). Stan (and I) wanted so badly for him to know how much we all wanted to be there with him but our circumstance just wouldn’t allow for us it. In being there for one son, he missed being there for the rest…certainly a regular occurrence in lives of Dad’s all over the world and one that is not given too much thought in the context of a lifetime. When that life is cut short though, it can mean so much. We shared our ritual iPhone pictures and texts last year not knowing it would be the only one for them. Not knowing less than 2 months later Declan would be taken from us so swiftly I still have trouble wrapping my brain around those final days. Those terrible words. Those last heartbreaking moments of his life. I know this is not something I can or ever will be able to make up to him. I know he doesn’t expect it but the thoughts are there nevertheless.

So all these thoughts, so little sense in many of them…so much pain in most of them and yet somehow so much joy too. Weird, I know but true.

I think my thoughts have really come alive because of the amazing grant process we have found ourselves in the middle of, a la Vivint. You cannot know how truly inspiring it is to see those votes roll through my Facebook page. Each post lights up a memory of that person and helps remind me that Declan’s life mattered. That his life touched so many and lives on in their memory.

I’ve also been trying to come up with the perfect way to ask you to help and ask your friends to help but I don’t think there is any perfect way. I think it just needs to come from within. Come from a need to make a difference. Maybe it will be to see just how so much difference can be done by a simple act each day. Maybe by deciding you will set aside the 1 minute afterwards to send loving thoughts to your own kids / family…or even a family facing the devastation we felt in hearing those words, “Your child has cancer.” I don’t know what will make the difference for you, maybe the image of my husband leaving the gravesite on Father’s Day morning thinking he had pulled it together enough to call his own Dad and wish him a Happy Father’s Day and the ensuing uncontrollable breakdown he had when he heard his Mom’s voice on the other end of the line.

What will be the catalyst for you to say, I’m committing to voting every day until August 27th and asking your family and friends to do the same?

Vivint is giving away $1.25 Million to charities. Help us win!

Please help Journey 4 A Cure — please vote everyday in the vivint giveback contest, share your message and help us fight this horrible disease.  We need your vote every day and your friends votes in order to get these desperately needed funds!

Pediatric cancer is a disease that affects millions of children. Since 1980, only 1 new drug has been approved to combat childhood cancer, a period that has seen 50 medications for adult cancer. Journey 4 A Cure was founded to honor Declan Carmical in the hopes of helping other children. Pediatric cancer research is underfunded, without funding there is no research and without research there will be no cure!

Cancer robs children of their childhood, it robs parents of their children and it robs our society of its security in knowing that if children get sick treatments are available. We owe it to our children to give them HOPE! A cure is possible and it is our responsibility to fight for it! Please help us by voting for Journey4acure in the vivint giveback contest, 100% of the funds will go to childhood cancer research!

Why Journey 4 A Cure?

  • Will it strike your family?
    – Every day 46 children are diagnosed with cancer
    – Every 4 hours a child dies from cancer, 6 children a day, more than 2,000 a year
    – 1 in 300 children under the age of 20 will be diagnosed with cancer, 1 in 5 of those children will die, and 3 in 5 will have long term side effects from the current treatments that were developed to fight adult cancers — cut, burn and poison
    – Cancer is the #1 disease related killer of children.
    – Approximately 40,000 families in the U.S. are battling pediatric cancer today.
  • Current picture for a cure?
    – 1 new drug has been approved to treat cancer by the FDA in the last 30 years.
    – There is research on the horizon, but funding is scarce
    – The American Cancer Society gave less than $0.003 for every dollar they collected to pediatric cancer research in 2009 — their focus is not on children.
    – At the current rate of funding, it will take 100 years to get treatments, drugs and cures to our children.
    – It doesn’t have to take 100 years, it doesn’t have to cost so many lives. We just need to come together and rally for our children… and their children.

So we Journey 4 A Cure fighting to raise research dollars that will support pediatric cancer research and help for those fighting pediatric cancer! Please care, please help.

The vivint giveback contest will provide $250,000 dollars to the winning charity that gets the most research. Every dollar will go to research. Currently we are 4,000 votes behind the winner, but every person that cares and votes each day will mean 70 votes for Journey 4 A Cure between now and August 27th. Please vote, please share the message and get your friends to vote! We can do this! Thank you!

Vivint is giving away $1.25 Million to charities. Help us win!