Thursday, March 1, 2012

For everything in this life, there is a price to pay. Day 5 and 6. Zoey Grace, the wonder girl who turns 5 tomorrow!


Well, I am cheating here a bit. I hadn't planned it that way. But as the infamous John Lennon song, 'Beautiful Boy' goes, "Life is what happens to you while you're busy making other plans." And life for me, decided to hand me .... shingles. How is that for fun times?  And now, when someone says, "so and so had shingles" and you reply, like I have, many times in the past, " I hear it is painful." I am here to tell you, painful does not even come close to describing it. That is coming from a person who has an extremely high threshold. Nasty stuff. But hopefully with an anti-viral on board and fingers  crossed we can keep the severity down and file this away as another weird thing that would  of course happen to Heather.


You know, I really hadn't thought out any of these Zoey posts ahead of time. I just kinda sit down and and begin with a simple emotion or thought  and it morphs from there. And often, not very easily either. Writing for me is difficult and not at all speedy. My writing is usually laden with grammatical errors and that is even after I have proof read it like 10 times and I still don't catch half the stuff. At some point I just say, whatever and go with it. Hit publish and it is a done deal. Knowing everyone will usually get the jist. On top of my many other little quirky issues, I have realized into my adulthood that I am, honestly mildly dyslexic. Makes perfect sense when I look back at my schooling and my issues I struggled with and things I struggle with to this day. So where am I going with this? I have no idea, except to say, that the commitment to write this way, over the last several days, has not been an easy task. With that said, my thought for today's posting started with the phrase 'collateral damage'.


Collateral damage is defined as: 'injury inflicted on something other than an intended target'. I know that when that phrase is used and the true meaning it was intended for, was in respect to war. As in casualties caused in a military operation. And although we as a family, have not been engaged in military combat, we sure as hell have been at war. The funny thing is, I am not exactly sure who or what, we have been waging war against but if I was to put a face to it, a name to it, I guess I would say, it has been  death. As simple and as complicated as that. The fight, tooth and nail, body and spirit, against a force trying to steal from us, our greatest gift, Zoey's life.


And when one stands toe to toe with an adversary such as death, there will be unintended casualties. No way around it.Those casualties may take the form of tangible things such as the loss of a family home, which will then take on an added worry of future financial security. Not to mention the toll of changing homes, not once but twice, over a 3 year period. Which means changing schools and school friends and leaving neighborhoods and neighborhood buddies, as well. You may find that part of the village that you thought would support you, instead, had no idea how to cope, what to say, or how to act, so they took the easy route and left. You may have children, old enough to help carry the load, as you, the parents, are wading through the wreckage, only to find, the load you asked them to help carry has  cost them along the way. Mainly the luxury of a carefree senior year of high school. That might not happen to just one child but spend long enough time in the trenches and it may just effect two. How about the emotional toll on your other children that are unfairly ask to face the mortality of their sibling? And some of those children are practically babies themselves. You may find that ignorance truly was bliss and the new view, riddled with fear and  uncertainty, is a sight you would have preferred to not have glimpsed. Especially as you have learned about more medical diagnoses, and watched more children suffer from diseases and disorders that at one time, only happened to someone else. Someone else's worst nightmare. You my find your marriage of well over 20 years, would be tested and pushed to limits that are so heavy and hard, that you too could have taken the easier route, just as members of that village had, and left.


You get my point, don't you? Because I could most definitely go on. The point being, that my previous posts on Zoey and her indomitable will to survive, were the center of our story but the rippling effects have been far reaching. The layers to our life were and continue to be, complicated. And for me, I know, without a shadow of a doubt, that I have had to struggle through not just one, but a few periods of time over the last few years that  can only be classified as Post Traumatic Stress Disorder. How could I have possibly escaped it? One day, just over 2 years ago, I was talking to Zoey's pediatrician about my inability to feel joy in my life without feeling as if another shoe were going to drop. A constant state of anxiety about what else might be lurking around the corner. And he asked of me, what I thought a normal response should be, of a mother who has watched her child endure, what I had watched Zoey endure? He allowed me to see that my physical and emotional response to all that I have watched my child endure and my family endure, has been, dare I say again, normal. 


When people say, I just don't know how you do it? Or they confess that they themselves 'could never 'do it',  that perplexes me a bit. Sure, I suppose I could have crawled into the proverbial bed and pulled the covers over my head, and trust me, there have been times I have wanted to, but to do that, to skulk away and turn my back on my obligation and my duty and quite frankly the privilege that has been handed to me, is just not in my genetic DNA. I have known no other way, than to take this life of the last 5 years, full of its heartache and sorrow and pain and ugliness and allow the grace and the goodness and the joy to win. Easy? Absolutely not. But that grace and goodness has indeed won. Now, if the truth be told, I still could use a solo trip to some tropical island. But run away, turn away,? Never. And if you think for one minute, there are not parents that do just that, I am here to tell you, with first hand knowledge, that happens. As unbelievable as it sounds, it does happen.


Over the course of the last five years and specifically since our journey with leukemia, I have been changed and yes, some of it not for the better. I am a bit more judgmental and intolerant. I truly try not to be. But the truth be told, I am. I am a bit more cynical. I am a tiny bit bitter and angry because of the things I have witnessed. The grief I have watched envelope families, can hardly yield any other result. I may always question the whys of this world and I think that is perfectly fine. I think the problem becomes when you dwell there too long. Because the questions most likely will never be answered. No good will come of waiting for the black and white, cut and dry answers. Wasted time and wasted energy. And the bitterness and anger, those two things, are nothing short of toxic. 


I do find myself or better said, I have in the past, found myself worried about the toll the last 5 years has taken on my other children. What will they carry with them? What scars will they bear? But in the end, I know the resiliency of children and the resiliency of the human spirit. I do know that my boys for instance will be better husbands and fathers because of the presence of their sister in their life. And it is no different for the girls. I see the adoration in the girls eyes, as they look at Zoey and marvel at all that she is and they confidently look in the direction of all she will become.  I see the service they are doing out in this world, and the career paths they have chosen and know, that Zoey has been a catalyst in all of it. I know when Mark and I are gone,  and if we are so blessed to leave this earth before our youngest, I know, without a shadow of a doubt, that we will have not one, not 2 but possibly 5 children, fighting for Zoey. What could be more beautiful than that?

(I realized as I was scrolling through pictures for this post, that I have very few photos of Zoey and I together, or for that matter, myself with any of my other children. I might have to try to change that.)

So yes, collateral damage, there has been plenty and I am not so naive to think, that there will not be more. There will be. This I know. But as I have said, countless times before and so much so, that I have, ready for this, for any that don't already know, I have the two things that have been my trusty guide on this journey,  and I have those words permanently etched upon my skin. To be reminded daily that collateral damage is no match for HOPE AND FAITH. If I did not come equipped with those two things, even in the darkest of times, I, we, would not have survived all of our yesterdays or certainly, any of our tomorrows. 



I know many of you are most likely not fans of tattoos. I get that and understand it actually. Tattoos are not for everyone. With that said, a little about my tattoo. I had it done on a whim, on my way home, the night before Zoey was released from her last chemo treatment. I had been toying with the idea for awhile. It is on my wrist. It is single tattoo, call an Ambigram. The pictures makes it look a little larger than it is. In one direction is says 'Faith' and in the other, not as sharply, as to keep the integrity of the letters, it says 'Hope'.  I have not regretted having it for one moment.  I do get looks and quick double takes from time to time and yes, I suppose even judgment but no matter. To me and those who love me, it is 'me'. Fitting with my personality and appropriate for the way I try and live this life given to me. Rich in blessings. Rooted in faith and clinging to hope in the journey that lies before us.


colleen said...

Such a beautiful, honest post. Wish i had "known" you then but only discovered your blog on facebook after most of the trauma had subsided (if trauma ever does subside). Your spirit has always been inspiring, but this post details how difficult the struggle actually was and still is in many ways. To your beautiful nurturing spirit and the inspiration it provides! Hoping the anti-virals kick in and ease some of the shingles pain. I don't know if I mentioned that my brother in law is one of six boys (from Binghamton actually)and has an older brother w/ Down's syndrome: they do all care about their brother much the way you envision your children will care about Zoey.

Anonymous said...

Those tattoos are Heather. I've never wondered about the whys of having them at all.

All the photos are wonderful with each family member. The single photo of Zoey Grace is beautiful, It will be the next photo to go in my Zoey Grace frame!

I'm so sorry about the shingles. Maybe after the "birthday" you could possibly slow....down a bit. Who am I kidding. know you have 3 other birthdays within 30 days! (Caitlin, Jake & Jessica)
and yes, Caitlin & Jess are adults but they still are your babies..

And Heather you need not worry about Zoey's siblings stepping up to the plate if needed, just look at the example their parents have shown them. Not to worry, Heather, not to worry


Rochelle said...

Hope and faith girl that sums it up (and your tat is WAY better than Jason's horrific thing on his leg, I should post a pic of it).
So sorry about your shingles, stress anyone?
Love you dearly!

Justine said...

I love your tattoo. And the pictures of Zoey and her big brother. And this whole post. Hoping the collateral damage lessens with time.

Cammie Heflin said...

Your writing is always amazing :) Really wish those darn shingles were not causing you so much pain :( Can't believe Zoey is celebrating the big five tomorrow!!! Hugs from MO!

Becca said...

Beautiful, as always. And your words *nearly* as beautiful as the photos of your older children absolutely *adoring* Zoey with the looks in their eyes. It couldn't possibly get better than that.

Wow, 5! Happy birthday to sweet Zoey!!!

Btw, my husband had shingles a few years ago. Not. nice. Hope you feel better soon!

(LOOOOVE your tattoo...)

Linda said...

You have such a beautiful heart and I love reading your thoughts.

I love your tattoos! I personally don't have any but I love the ones that my older kids have, they have such meaning to them. My daughter has the word "grace" on the inside of her wrist.

Hope and faith are what keep me going, too.

Cheri said...

Zoey Grace... I have loved reading your mom's posts leading up to your birthday. I have loved revisiting pictures I have seen of you before when you were just so little little...always so precious, always so sweet, always smiling! When I saw the pictures of you in your hospital bed during treatment I had forgotten just how little you were. That was the first time we met you but you had long prior wrapped yourself around our hearts! Zoey, I think what I have loved the most is seeing the pictures in today's post... the ones with every member of your family. You are so loved and it is evident in each and every picture.

You are beautiful, you are strong, you are courageous... I cannot wait to see all that you explore and accomplish in this 5th year... I cannot wait to hear stories of Kindergarten and all the fun you are going to have. Once upon a time I was a kindergarten teacher and I have to tell you it is just about the best grade ever... you are going to have so much fun and are going to melt the hearts of your teachers!

Zoey..... Happy 5th Birthday sweet girl! We absolutely love you over here!

The Foremans

Elizabeth said...

Bravo on this post. It is definitely my favorite so far -- and resonates so much with me. All of it. I so admire you and your ability to keep faith and hope -- I just can't believe my good fortune in having met you and your beautiful family.

Rachel Douglas said...

Oh my, oh my. I am at a loss of words and that does not happen often. I have to read this again and again. Thank you for writing is all I can manage.Rachel

Just Another Ordinary Miracle said...

Some days you leave me speechless because you take the words right out of my heart and mind. Maybe you are my kindred spirit... And for the record I "had" a tattoo of a butterfly before Ivey was born. I freaked myself out a bit after the first boy was born because I kept trying to come up with a good explanation as to why he should never ever get a tattoo. So ihad it removed. You know now butterflies remind me of Ivey. A morphasis of life and it's beauty. I miss that thing some days. Don't be surprised when I get it again!
You are beautiful inside and out. And the judgmental part, well, it's because we see so many taking things for granted and not enjoying the great gifts they are given..

The Annessa Family said...

Beautiful post filled with truth and grace - love your heart, your sweet girl, and the feisty spirit you both share.


Wendy said...

Heather, it's hard to believe that 5 years have gone by since we were at LA Congress & heard that you had given birth to Zoey. I don't usually comment on FB but I have followed your blog for a while & today I just had to say what a true inspiration you are. Wishing Zoey a Happy Birthday

Claudia said...

aaaawww, what a truly magical post with wonderful, wonderful photos. There is a special atmosphere in those picutes. They are all full of Love.


Anonymous said...

Well - my last post was 3/1/12 - and now it's official:


5 years old - so amazing and just think the world of kindergarden awaits you. You will inspire so many more people when you go to school!

Huge hugs and tons of kisses!!

Great Aunt Bluebelle

PS Hope those darn shingles leave you soon Heather. Nasty stuff!

Emma said...

Happy Birthday, Zoey!! I pray you will be blessed with many more years of wonderful achievements.

I'm beginning to see the truth in the joy you get from being with those special people, since I'm on a work placement at a day centre for adults with learning disabilities. I have followed and loved Zoey and many more of your friends online for a few years, but it is truer now for me than ever.

Hope things are better for you soon Heather, and hope all the family is able to enjoy this very special birthday!!

Lots of love,
E x

Anna said...

Heather, oh how i love reading posts from you daily. Youve been through alot, so has the rest of your family. I understand what you said about PTSD I know mine was called PAD. A mommy can only handle so much, we have emotions because we are human so yes it is normal. Not fun- who really wants it?! But normal none the less. Take care of you, and the shingles... so so sorry.(and happy birthday to darling Zoey Grace!!) If I wasnt scared of it hurting Id get a tattoo as well. It would have grace and a beautiful bird. I love the ones with the white inks. My husband would prolly have a fit. But, this artsy girl would LOVE it!(typed with a mischievous twinkle in my eye)

krlr said...

I am NOT a tattoo person - because I couldn't think of one thing that would summarize All That I Am (air quotes) for all time, till I got old(er) and (more) wrinkly. But yours.... Hope & Faith. That is just gorgeous.

[Also - shingles: it *sounds* innocuous but I had them once and thought I had meningitis and was about to expire. So, yeah, IT IS PAINFUL. Neither of the 2 MDs I saw would even enter the exam room. Fun times]

blogzilly said...

We must be related somehow I think. This week of posts hit on so many topics I have been thinking of lately it is downright frightening.

Happy Birthday to Zoey again, I know I already said it privately, but it isn't 'real' unless we do it on a blog format, right? ;)

You hit on the High Cost of Everything, Shrapnel, Faith, Hope, Anger, so many things...and even Tattoos...something I have always believed are expressions of inner pain or struggle that are often forced to the surface, to rest on the skin and give us strength. Visual cues. Reinforcement.

I have wanted most of my life. What's that tell you?

This week of posts will need a tab on your blog methinks...

Jeana said...

Can I just say that Zoey's blog should be published in a book and sold to the world. You are an amazing writer and even though it's difficult for you, it is always amazing. Also, you really need to take more pictures of yourself. You are so beautiful and the world needs to see you!!

Melissa said...

I love all the Zoey pictures with her siblings!! Since I'm so far behind I hope that you are feeling much better and the pain of shingles is gone.

LOOOOVE your tat!