Not Your Average Joe’s

Tonight was the final night for the Not Your Average Joe’s Restaurant fundraising event, Not Your Average Cause. Stan and I made plans go up, take part and to say thank you. We are so grateful for the opportunity and for all the friends and family who support us in all we do for Journey 4 A Cure. Plus it was a nice excuse to get out. :)

Unfortunately, I have been having a rough time and tonight I couldn’t hold back. I have been struggling with so many things that I conceivably have control over but can’t seem to act on (grief stinks) and so many things I will never have control over…Declan’s illness and ultimate death (grief is mind bending and truly unfair to your sensibilities). And I came clean tonight. I cried so hard for so many things I have in my head and just haven’t talked about. Some of it is rational, some of it is not.

It’s hard to talk about it, especially with someone you love who is hurting as bad as you are but is the only one who truly understands. But tonight we talked and cried. Not at all what we intended when we left the house tonight but what we, certainly I, needed.

And somewhere between the tears, the irony of the night hit me, Not Your Average Joe’s…that’s what we are. People who appear normal on the outside but are not at all what they appear. Kind of like a duck in the water….they appear calm and cool on the surface but beneath the water their feet are feverishly paddling.

We’re normal…we have kids to take care of, lunches to pack, bills to pay, jobs to perform, groceries to get…but really, we’re ‘Not your average Joe’s’….our lives are forever changed. Life will and is going on around us but it will always be something different from everyone else. Right now it feels awkward. I think it will change, I hope it will change but I guess it’s the process. The process of becoming comfortable with the new us….not shedding the old, we could never do that or want to…but learning how to be the new us.

Just Your Average Joe’s…taking life one minute at a time. Some more pretty than others but taking those steps, everyday. Bear with me / us will you? It’s so much harder than it looks.

5 very long months…5 very short months

Can it really be that 5 months has passed since I last held you and looked at your sweet face?  Some days it feels like August 18th all over again with the hot searing pain of knowing we will never see you again on earth, our hearts breaking all over again.  Other days it’s still there that empty, lost feeling but it is less raw.

Through it all, there is not a day that goes by without you in it. Some days your face dances in front of everything I do, while other days it’s a familiar sound, smell, outfit, picture, a butterfly floating by, a gentle rainbow, a blue ribbon, a giraffe (real, stuffed or plastic, or even a giraffe print), beautiful blue eyes on a little boy, the touch of baby’s skin not much older than you were when you were diagnosed, a thousand different songs, stuffed animals, another Cole milestone being hit (Aren’t you so proud of him?  He’s amazing…just like you), a  book, all the Sesame Street guys, the morning, the night, learning of another child like you, in the quiet, in the chaos, bath time, bedtime, …truly the list of these moments is endless, the moments my thoughts go to you.   Some days it’s overwhelming.  Kind of  like when you’re body surfing the ocean waves and you “catch” that perfect wave juuuuust a bit too late and end up getting tossed like a rag doll…struggling to find which way is up as you uncontrollably bounce off the sand and the waves.  Where it is work to put that Mommy smile on and get to it.  In these moments, I remember how strong you were on the worst days and find the strength to take that next step.  (BTW, I do that for your brothers too…they deserve it.  They put up with a lot during your illness too.  They understood as best they could, were so amazingly supportive of you and what they had to give up for us to care for you.  I know they were confused and scared…and still are…so I try really hard to make sure I put one foot in front of the other each day for them as well as your Dad and me.)

Other days, I feel you in the breeze and by that I mean,  you wisp in and out of the moments of my day.  Very much like you were…a happy little baby finding the joy in all pieces of the day.  You let me know you still find the joy by the little ways you show yourself to me, especially when it’s in the moments with your brothers.  My heartaches for you all missing a life together but I know you are always near.  It’s not at all the life I envisioned for my 4 boys but it is the life we now lead.

Declan, my heart breaks over missing you.  I know this will never change, you will be with me forever in this way.  But in those words I know my life was made better by being your Mom (just as it is with your brothers).  Our experience has changed but the love still grows.  Oh wow, does the love still grow!

I miss you terribly baby.  All my love, Mommy.

Work through tears

Starting Journey 4 A Cure is needed and something I am desperately passionate about…but it is also extermely difficult to live in this world, this world of cancer.  I’m not saying it’s all bad, it is far and away the most amazing life I could lead.  Why?  Because I am given two gifts each day…the good I am already seeing by the creation of J4AC.  It is beyond heartwarming and amazing to know this fight is not being fought alone.  Truly, it is an unbelievable feeling.  What is also amazing is the spirit of these children who fight every day.  The stories of their lives, some of whom know only the four white walls of the hospital, are awe inspiring and so uplifting to the soul.  They live a world none of us would trade for (except us parents) and yet they live it with smiles, giggles and the hearts of warriors.  If you’re ever feeling like you can’t do something, read one of their stories…you’ll be embarrassed at what you think is so terrible in your life.  (Hope that doesn’t sound harsh…but I still feel that way when I read about these heroes.)

It’s the dark side though that is tough on some days.  It’s the knowledge I get on a day to day basis about other families.  The other families learning of this diagnosis for their child and those who are letting go the hand of their child for the last time.  Today is one of those days because in my effort to perform a task for J4AC today, I found 3 children who recently passed.  I read their stories and am crushed, sitting here at my computer with tears dripping into my lap.  One in particular ate at my soul because it eats at the very core of the spirit of joy we seek during the holidays and I wanted to share it with you so you can see again a window into why I/we Journey.

From Jonathan’s Momma

Saturday, December 25, 2010 9:33 AM, CST

At about 12:10 am this morning John went to be with Jesus.

I was so sad to see all the presents under the tree this morning.

When my other two woke up, they looked at there stockings and said there’s John’s can we take it to him?

How horrible to have to tell your children on Christmas morning that their brother is gone.

We told them that the Christmas Angels came in the middle of the night and took John’s spirit to Heaven to be with Jesus. They went to his room and his bed was empty. How terrible for them.

They came out and opened their presents, they had fun with their things. I imagine that they would have more fun if they hadn’t had the bad news from us before hand.

Even though John was not healed, he is with Jesus, he has a new body and is able to do all the things that he has not been to do over the past year or so.

I held him in my arms when he was taking his last breaths, I loved him so much. My husband and mother were here also and talked to him, gave him hugs and said their good byes.

The last couple hours of his life were spent hearing the Christmas story and watching “The Search for Santa Paws” John loves the Buddies movies so much and this was the new one.

He struggled to breath much of the day yesterday but thank God he never looked like he was in pain. He was and is such a precious child and we will miss him so much.

John truly was our joy. His story is so full of pain and misunderstanding. He is with someone now though, who has always loved him and understood him. Jesus please hold my baby today and care for him, because there is no one in the universe that cares for my son the way you do!

My days, our days as a family, are forever changed.  But the ‘our’ really encompasses so much more.  Yes, the ‘our’ is our family and all the families who are battling (either active or remission because cancer looms always even for those who are cured) or like our family, suffering the loss of a loved one from cancer.  The ‘our’ should be all of us…our collective lives are forever changed the minute a child is diagnosed and even more so in the seconds when a child is lost to cancer.  What would have become of the life snuffed out by cancer?  What would their life have lead to?  What did we lose by their passing?  If the average life expectancy is around 75 years…what is the collective loss if we look in terms of years on this planet?  The thought is staggering.

So today I push through the tears, like so many of our cancer warriors, to work hard to get J4AC’s footing set and moving fast towards our goal…to beat cancer.

The Moon

The moon has always fascinated me. I know part is the childlike curiosity that surrounds this big glowing ball or crescent which hangs in the sky moving from one place to the next with seemingly little effort. Maybe it’s the way it changes shape…from a giant orange harvest moon which sits so close to the horizon it seems an outstretched arm could reach its warm, welcoming glow or to a sliver so tiny on some nights, it is hard to find in the night’s sky.

I think the other part is that it is always there. No matter what is happening in my world if I look up at night it is there. I have always awoken in the middle of the night throughout my life…not every night, mind you, I mean I’d be hell on wheels if I woke up every night in the middle of the night…and I find myself migrating towards a window. Every home I have had has a special window or two where I do my best gazing. I think it gives me perspective on my little corner of the world and helps me to connected to something so much bigger than me. To know there is so much more than little old me out there and it has always given me comfort.

When I see the moon, I feel at peace. Luckily for me, it seems most nights I can recall really needing to find it there…the clouds were thankfully absent. Recently I find myself looking for the moon and I’ve been treated to some amazing views (and no…I didn’t see the middle of the night lunar eclipse a month or so back… and yes, I was up but helping a little person with a bad fever to calm himself back to sleep…and forgot to look out the window the multiple times I was up…ah well.) But it’s not just the views or the peace I am feeling. I realized the other day how connected the moon makes me feel. Strangely, this object, I will probably never have the ability to truly physically know, gives me such a connection to those I care deeply about. (BTW…Richard Branson…if you’re reading this and you’re feeling philanthropic for one of your upcoming flights…I’m your girl!) :)

Seriously and maybe a bit strange to some, it makes me feel connected to those not close to me. How? When I can share a view into the night sky and know they are looking up at the same moon. “Hey, I saw the moon last night and thought of you.” and in response…”You’re kidding, I was looking at the moon and thinking of you too.” Knowing we “share” the moon makes me feel so much closer to those not in my backyard. In those moments even though the miles between us are great, they seem to dissipate as if we are arm in arm.

It is the same way with my family and friends who have died. The moon bridges the gap or opens a channel for just me and whomever it is who is front of mind…my Gram, my Uncle Jim, my Aunt Nancy, to name a few of the all too many. And of course now, my sweet Declan. In those quiet moments…just me, the moon and my loved one…we’re together; sharing the warmth of the peace which comes from knowing you have, and are, loved.

I think the physical act of looking of up and feeling the depth of connection helps to keep my spirit light. I won’t lie and say it’s been all roses…the connections can make me sad too…because when my heart opens to the love, I’m reminded of the hurt too. Missing those I love so dearly. I do think the love prevails to lift my heavy heart on those hard nights because of the very reason I seek it out. I feel comfort and peace in the loving thoughts and feelings I have for my loved one. Even though ‘sharing the moon’ is not at all the relationship I wish I had, for me the connection is real; and I know when I’m gone, I’ll be able to make that connection with those I leave behind and it gives me comfort all over again.

I looked at the moon tonight and thought of you…my dear friends and my dear family…and felt peace.

A hospital visit, a flood of memories and a lifelong commitment

As most of my Facebook friends know, I took at tumble on January 1st and ended up with a broken foot. (I’d love to tell you it was a fantastic story…wild NYE dance party accident or a ‘Mommy trying to keep with her boys’ football injury; ANYTHING other that what it was…losing my footing down TWO steps in my garage and breaking my tibia near my ankle.)

It’s not my leg I want to write about…I’d like to forget about it but not for another 4-6 weeks ugh!…its about the thoughts it brought.

During our visit to the ER and the subsequent x-rays and CT scans, I couldn’t help think of Declan. I mean how could I not? He had more x-rays and CT scans in his little life than I hope I’ll ever have. The thing that first struck me was how cold those rooms are. I mean I recall them not being so kid friendly…white walls 1 or 2 pictures or none on the walls, boring and even a little scary in their blank vastness. As I was rolling down the halls in my ER bed and into the x-ray room, I could not hold back my tears. What could he have been thinking…all of 6 months, then 7, then 8, then 9, then 10 and finally 11 months old. What was his little mind processing? Did he realize how hard we were trying to make sure he felt safe and protected amidst all the craziness going on around and even in him?

I believe he did but I can’t shake the sense that I was given just the smallest glimpse into what some of his hours were like…and I “road” the gurney with him before and certainly walked beside his crib as it wheeled the halls to countless procedures and surgeries but this felt different. Maybe because it was me, who knows. But I felt it so poignantly and it has shaped so many of my thoughts since then. Maybe because I can’t “live” the life I’d like to right now because I’m laid up….and in NO WAY am I trying to compare my measly broken leg to Declan’s cancer…but he didn’t get to live the life ahead of him. Or even live the life around him. He wasn’t practicing sitting up or trying to crawl or any of those things…he was getting chemo, and brain surgeries, and loosing his hair. I mean we tried to make his life “normal” but it was anything but.

This is such a rambling post but it mirrors how my brain functions these days…trying, once again, to make sense of a situation that just makes no sense.

I’ve also learned of two other boys who just passed away…both shy of their 2nd birthday’s…boys who shared treatment together. We weren’t treated in the same cities or ever met but I feel their deaths so deeply. I have felt the death of every child (and adult) who has passed since Declan so deeply because I’ve been there and ache for their families and what I know they are and will be going through over the next few days, weeks and months.

Yes, it’s a new year…one that didn’t begin at all the way I thought it would but then again my life has turned into something I never thought it might. But it’s a new year nevertheless filled with all the hope and promise each year brings. For us it’s an opportunity to bring the world the story of our son and the countless others who deserve a cure. C’mon new year…we’ve got work to do.