Dear Mama...Love, Henry

One of the grief books I'm reading suggested writing a letter not only to a loved one that has died, but also from that loved one to myself. I've written letters to Henry before, but hadn't thought to write one from him. So...here's what I imagine Henry would write to me (imagining, of course, that he could write...or even speak in complete sentences. But, hey, it's all imagination anyway!)

Dear Mama,

I know how much you miss me. I see you cry when you think no one is watching...I feel the pain that sometimes stabs through your heart. I watch you as you rock in the nursery, clutching one of the several stuffed monsters that remind you of me. I know you want nothing more than to hold me in your arms again.

I wish you didn't hurt so. I wish I could tell you how happy you made me during my time on earth. You and Daddy made me your world...you never made me feel like a nuisance, or that you'd rather be doing something else. You gave me the  best snuggles, Mama, and boy could Daddy could make me giggle! You took me to so many places, and introduced me to so many people. And, most importantly, you showed me nothing but pure love.

I wish you could see me now...free from tubes and wires...free from cancer...free from pain. I play with my brother and sister, and get lots of snuggles from Nana (she's almost as good as snuggler as you are, but no one can quite fill those shoes!!) I miss you, but I'm happy.

You and Daddy make me so proud. I see how much you're hurting, but that doesn't stop you from doing good things. You bring awareness to the world through our story...you're honest and real, and that resonates with people. So thank you...for loving me, for sharing me and my story with the world, and for never forgetting me. I love you so very much, and I wait as patiently as I can for the day I will once again feel your arms around me.

Love,
Henry

September

You may wonder why September is so important to us...and to our fellow cancer families.  You may wonder why we put so much energy into planning and attending events.  You may wonder why we would want to remind ourselves, for a whole month, of what cancer took from us.  The pictures below are our "why."  Henry was seven months old when he died.  He had done nothing in his short life that caused him to get cancer.  He didn't sunbathe...he didn't smoke...he didn't use a cell phone...he didn't eat apples (I mean, it seems that just about anything these days can be blamed for cancer.)  His cancer can't even be blamed on heredity or genetics.  He just got cancer.  It isn't fair...he didn't deserve it.  None of our little fighters deserve it.  No one deserves it.  Honestly, I don't care if you smoked eight packs a day, I still don't think you "deserve" cancer. 

Now...October is just around the corner...and it seems, at least in my cynical mind, that the world turns pink for breast cancer.  Don't get me wrong, it's not that I think breast cancer doesn't deserve the attention.  But then I think prostate cancer should get the same attention...and lung cancer...and liver cancer...and blood cancer...and bone cancer...and, well, you get the point.  And childhood cancer, of all types, definitely deserves as much attention as breast cancer.  And, actually, maybe a little more.  The federal government provides a minimal percentage of budget to funding childhood cancer research.  Most children receive treatments that were developed for adults...25 years ago.  We hear the saying all the time...the children are our future...so why are we spending so little at protecting our future?  Why are we letting these childhood heroes fight, and struggle, and die?  Why do they not deserve the same attention and funding as women with breast cancer?

So, yes, September is important to us.  We may not be a big dog, but we are in the fight to bring awareness and funding to childhood cancer.  If we could spare even one family from the pain of hearing that your child has cancer, the pain of watching your child fight and suffer, the pain of watching the treatments cause more damage and delays to development, and the pain of watching your child die, then it's all worth it.  It won't bring Henry back, but maybe it will help someone else's Henry.  And, really, for us, that's what it's all about.  #gogold #allheknewwaslove 

Crystal ball

I came across this memory today...one of the first times Henry was sick. This particular instance I think he just had a stuffy nose and maybe a little cough. With Henry, his most noticeable symptom was always his missing smile...that's how we knew when he really didn't feel well.

I remember this...snuggling him in his Husker pjs while watching the game. I remember wishing I could have the cold, or at least that I could make him feel better. But of course I couldn't...other than snuggling and loving him. And in this particular moment I thought it was so hard watching my baby suffer. And it was hard. I just had no idea how much harder it could get.

And I'm glad I didn't have a crystal ball. I'm glad I could snuggle him and make him feel a little better in that moment. Because the hard moments would have come regardless...knowing they were coming wouldn't have made it any easier. Instead, it would have robbed us of the peace and joy of these innocent moments.

We so often wish we could see the future...we think it would make us feel better or more prepared. And maybe that's true. But it would also rob us of the journey and the learning and the growth that comes along the way. Thanks to Henry, I have grown and learned more than I would have thought possible. This journey, though difficult and not one I would have chosen, has made me a better person. Thank you, Henry, and thank you to those who continue to help me learn and grow. 

And don't forget it's still September (for awhile. I mean, September did just start a few days ago)...spread awareness and action when and where you can. #gogold for Henry 💛

Awareness

Today starts September...childhood cancer awareness month.  It's a month that, up until a couple years ago, held no special significance for me.  It used to be the month where I started feeling like I was back into a schedule...a month in which I looked forward to football, and the start of fall weather...a month that was kicked off with a nice long weekend, which somehow was so needed after only a couple weeks of work.  To be honest, I don't think I really was aware that it was anything more than September. 

Now, it's a month I really don't even need.  I don't need a month to be aware of childhood cancer.  I am aware of childhood cancer every day.  I'm aware every day of the year that I don't have a cute little boy running around and keeping me on my toes.  I'm aware every day of the year that I don't have that little boy to snuggle and comfort when he's sick or tired.  I'm aware every day of the year that childhood cancer stole almost all of his firsts from us...his first steps...his first words...his first days of school.

So no...I don't need a childhood cancer awareness month.  All of my friends that I've met through the monster that is childhood cancer don't need an awareness month.  In fact, we could probably use a break from being aware of childhood cancer.  But my former self, and all those like my former self, need this month.  We need to remind the world that childhood cancer exists, that it steals our children from us (whether they are survivors, current fighters, or angels...a normal childhood has been stolen).  We need to remind the world that the current treatments available for childhood cancer are not enough!  It's not enough for a child to be treated with simply a smaller dose of an adult treatment.  It's not enough for a child to be treated with something that was developed 25 years ago.  We need new treatments, and treatments developed specifically for children.

To achieve these goals, we need awareness...but awareness isn't enough.  We need ACTION.  That's what our goal is at A Monster's Mission.  We may not be a huge organization...we may not raise millions, or even thousands of dollars, but we are taking ACTION.  We are spreading awareness, and encouraging action.  We do this through our events like our annual blood drive, and our upcoming first annual foot golf tournament (shameless plug - get your tickets!!), even through our twelve days of giving we spread our story which spreads awareness and perhaps inspires people to ACT.

Let's make September childhood cancer awareness and ACTION month.  Do something...spread the word.  Donate blood (this is something you can do that doesn't cost anything other than a little time and a small prick of pain)...get signed up to be a bone marrow donor...if you are able, donate money to an organization devoted to research for pediatric cancer (A Monster's Mission, Sammy's Superheroes, Cure Search are just a few that come to mind)...share our story, or a story of another small fighter you know.  Let's show the world that our littlest fighters deserve our attention...let's make this month count! #gogold for Henry...#gogold for childhood cancer!