We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Sunday, March 30, 2014

Nightline!

We have had the most incredible two days! I will try to get another post out with my thoughts and feelings about it all, but for now, I wanted to link to the Nightline Prime story that aired last night.

Thursday, March 20, 2014

Reflections on 20 Years of Marriage

March 19, 2014 - Our 20th Anniversary.

As our 20th anniversary approached, I started thinking about marriage. The first thing I realized was that there is still so much that I just don’t know… I look forward to being married for 40 or 50 years and looking back at this milestone with some amusement. But still, it is a milestone, and one that I feel deserves to be acknowledged in my favorite way – with words.

I think the thing that I love most about being married is that I have been able to build, with my favorite person in the whole world, something that is completely ours – and completely unique. Since no two people in the world are alike, it stands to reason that combining two individuals would produce a marriage that is unlike any other marriage. I love the fact that John and I are completely different. We are so dissimilar, in fact, that (other than our spiritual beliefs) food is about the only thing that we have in common. But we happily go our separate ways and do our separate things. It is one of my greatest joys that John loves me enough to give me the total freedom to be myself. He never forces me into a box of his choosing, but simply steps back and lets me be free. This is such an amazing gift!

Oddly enough, it is not in the enjoyable things of life that we come together best, but in the work. We work together naturally and seamlessly as a team. I don’t know how or why. We just do. We have packed, unpacked, built things, rearranged things, and painted things more times than I can count, and we usually have a blast doing it (or at the very least, don’t want to kill each other by the time it is over). I will admit that the first time we painted a room together was a little bumpy, but we learned to agree to disagree on the fundamentals (such as what I still know for a fact is the purpose of a drop cloth – my poor meticulous husband…). Another mysterious part of this team work mentality is that we don’t need many words to accomplish the task at hand. We each do what we do best, and that is that. The funny thing is that we recently had to sort of laugh and realize that this is nothing that we can point to as a wonderful thing that WE do. It feels like, to us, that God knew our lives would be hard enough, and He just gave us this peaceful, harmonious thing as a gift.

The most beautiful thing about our marriage can be summed up by this one statement: the little things matter the most. Sure, there have been some big things over the years… the grand gestures and the momentous events – both good and bad – but honestly, the magic has happened in the thousands of tiny kindnesses. I think that my husband has beautiful hands. They were there for the big moments. They took my hands when we promised for better or for worse, and again years later when the labor pains took my breath away. They were the first human hands to ever touch either of our children. They gently diapered and clothed our tiny baby boy for the first time, and they held our daughter’s hands when she went through torturous treatments, and later, her lifeless body in the back of our car on the long night journey to the funeral home. There is no question that the big things matter, but I think that trust is built and won more in the little moments... The hundreds of unsteady toddler steps and active childhood endeavors that were supported by Daddy’s hands. The tough calluses from countless, repetitive hours of hard work providing for our family. The coffee that magically appears every morning, and often presented in my favorite cup. The hundreds of tasks, both large and small, that make my life easier. The never ending offerings of the best bite, and often the last bite, from his plate because he knows how much I enjoy food. The fact that those beautiful hands only ever touch me with gentleness.

THIS is my marriage. This is my life. What would I go back and tell that 21 year old girl? Nothing different than what she did: run straight into his arms and don't ever let go.

Saturday, November 09, 2013

Ellie's Legacy

Sadly, this blog has gone neglected for so long. After a while, life kind of kicked in and without Ellie around, my heart has not been in it... and of course there is Facebook. I can’t lie and say that I will keep up with it again, but now is a good time for a post. Just this week, Nightline aired a story about a hoax that directly impacted our family. Ellie’s photos were sent to several celebrities and used to inflict a great deal of emotional pain.  Multiple children's photos were used on at least a dozen different celebrities. The show highlights one of these.

Following are some links that will take you to the story:
Nightline Episode – Catfishing the Stars
Nightline - Reporter's Notebook
Video Clip from Natalie Grant

After the episode aired, TheTruth365 (A Documentary and Social Media Campaign that gives a voice to kids fighting cancer) posted Ellie’s photo with a description of the Hoax. (For those of you who have not done so already, I strongly urge you to check out the amazing documentary by TheTruth365. Browse their website, “like” their Facebook page, and share with anyone and everyone who will listen!)

TheTruth365 Website
TheTruth365 Film
TheTruth365 A National Priority
TheTruth365 on Facebook

After watching Nightline, reading all of the comments on TheTruth365, and after the past year of following the investigation of the hoax, I have been doing a lot of thinking.  I feel that now is the time to share my thoughts.

I have so appreciated all of the heartfelt thoughts and expressions of concern from everyone regarding the hoax that was aired on Nightline. Like a broken visual record, the sight of Ellie’s face on Thursday’s post, with the word “victim” attached, has been playing across my mind’s eye. It is absolutely true that she was the victim of a sick hoax, but I simply refuse to add victim to the wonderful and vibrant list of things that describe my sweet girl. The fact of the matter is that I choose not to be a victim (of cancer or of hoaxes) or to let that define my daughter. A long time ago I learned to stop being afraid of the bad things that can happen in life and to start living with my heart wide open. I have found that it is impossible to fully love and open myself to others when I am simultaneously trying to protect my heart. Despite having Ellie’s photos used as a weapon, I am not sorry that we put her story out there for everyone to see. In her short life, Ellie has touched more people than most of us ever will if we live to 100. Even now, in the face of this negative event, Ellie’s story continues to move hearts. My greatest desire when this story went public was for positive things to happen. I know that this would be a lot harder to say if Ellie had been hurt. The plain and simple truth is that no one has the power to hurt Ellie anymore. I have unshakable faith that she is in a perfect place where she has no more pain or sorrow... a place where she is free. This hope is what allows my own heart to be free. I would love nothing more than for you join me in letting go of the pain and indignity of this whole situation, and focusing on the good. There is so much good.

Some generous and kind hearted people have been put through a cruel emotional wringer and have emerged with a desire to continue to open their hearts to children with cancer. This is huge. As parents and loved ones of these children, this heartbreaking world we live in begins to feel normal somehow. In the past, I have found it a little too easy to draw others in and assume that it feels as natural to them as it does to me, and to not fully appreciate the emotional sacrifice that they are making. I hope that this story will teach us to treat the emotions of others, whether they are friends, neighbors or celebrities, with great respect and tenderness. These are not their children. They do not have to love them, but they choose to. That is powerful... and fragile.

I hope that our anger doesn’t distract us from keeping our eyes on the ball. I love how united the pediatric cancer community is becoming towards this one common goal – keeping our children alive! That is the focus in everything that we do. I know no one would have chosen for awareness to be spread in this way, but it has happened... and I think it's safe to say that many people are now keenly aware. In my opinion, getting bogged down in the outrage will only muddy the waters and keep our eyes off of what really matters here. Let’s face it, when you have lived the nightmare of watching your child suffer the way that we have, and then watch her die in front of you, something like this hoax doesn’t even make it into the top ten worst things that you have lived through. It just... doesn’t.

One of the positive things that came from this hoax for me personally is that I now have the opportunity to show Ellie's photo and say to the world that she is mine. I wish you could stroke her velvety little bald head and watch Ellie's clear blue eyes fill with such softness and love (focused on you personally), and then quick as a flash turn to a devilish twinkle when she decided that because she was in pain, someone must be slapped. (It was wise to not be the one standing close at such times, although she was polite enough to ask first.) I would give anything to show you the mixture of awe, pleasure and embarrassment that washed over her face when people praised her courage, or took inspiration from her life. Ellie loved, yet also shrank from attention. I wish that I could open a window in time for you to peek through to watch Ellie patiently wrap her long, delicate, butterfly-like fingers around her little brother's hand, and guide him through learning a computer game... Then later lock him out of her bedroom because he was "pesky." Ever the responsible big sister, she constantly questioned my parenting choices: "Mom, are you sure we should let Ethan watch this show?" Whenever she was not secretly plotting to take over the household, Ellie could be found drawing the most beautiful pictures of animals. Most of all, I wish that I could capture and show you the light in Ellie's eyes that was reserved solely for her daddy. John filled her world with so much love, adventure and fun, and she rewarded him with a fierce tenderness.

If Ellie could meet any of you today, she would look at you with those big, wise eyes... and love you. Simply because you're you. Ellie was cool that way. As her mom, just as I was tasked to protect Ellie’s body, mind and spirit in life, I am responsible for her legacy in death - and Ellie’s legacy was love. Just... love.


Wednesday, September 29, 2010

Happy Birthday, Ellie!

I can hardly believe that today Ellie would be turning 12. It is so hard to imagine sometimes, when in our minds she will be forever 9. But then we look around and see Ellie's friends who are now as tall as I am, and the realization hits that she would be different at this age than what we remember.

Just the other day, John was looking through old documents on his computer and he came across something I wrote about Ellie when she was 5 - long before she was ever sick. The Today Show was doing a contest. They were promoting a Martina McBride song (click on the title of this blog entry to go to the song) and wanted mothers to submit essays on their daughters. I never sent mine in. I guess I figured that in the world of children, no one would find anything terribly remarkable about mine. Everyone thinks that their children are amazing, so I just wrote it up and forgot about it. I never even showed it to John. When John found it all these years later, what struck me was that this was simply my own thoughts on what my sweet Ellie meant to me when there was no cancer looming dark on the horizon... no thoughts of losing her to color my opinions with the rose colored glasses of motherly grief. This is what I wrote:

"As I watched Martina McBride perform 'In My Daughter’s Eyes' on the Today Show, I cried while I thought about my five-year old daughter, Ellie. That was the first time I had heard the song, and I was struck by such a truthful portrayal of a daughter’s love. I have been so blessed by my daughter’s life. I know that I am supposed to be the mom, but Ellie has taught me so much! She is such a loving, imaginative, and articulate little girl. Some days Ellie wants to be a ballerina or a decorator when she grows up, but more often than not, she wants to be a mom just like me. Ellie constantly challenges my view of the world with her perceptiveness and her own unique form of logic. One day she told me that she would help me decorate when I am on TV like all of the decorators that I enjoy watching. (As if it is a foregone conclusion that I will be on TV one day.) When I attempted to explain that the decorators on TV know so much more about decorating than I do, and have much more experience, Ellie’s answer stunned me. She said 'they all had to start somewhere, didn’t they Mom?' Ellie also shows such a depth of love for everyone that she cares about. When I apologize for being grouchy with her, Ellie is quick to say 'It’s o.k., Mom, I love you. You are such a good mommy.' She is also wonderful about coming to me to confess any wrongs on her part. She will show me things that she has done that she could have easily hidden, and she will often come back to me, even a day later and say 'I’m sorry that I didn’t obey you right away when you told me to get ready for bed last night.' Every day I feel so blessed that God gave me the love of such a special little girl, and I realize that while I am trying to teach and guide her, I am actually being taught the most of all."

I found something else that I wrote even longer ago - twelve and a half years, to be exact. I was sorting through boxes of things that had been stored here when we were in Montana, and I came across the baby book that I wrote in when I was pregnant with Ellie. On page after page, I wrote in a way that only an expectant mother can... I poured out my hopes and dreams for the future. One particular page stood out to me above all of the rest...

Thursday, March 19, 1998
"Our fourth anniversary! It's hard to believe that four years have already gone by. On this day, especially, my heart is overflowing. John and I have had the most wonderful four years together and now God has blessed us with a baby. It just seems too good to be true! This evening as I am surrounded by my wonderful family, it seems that God is too good to me. I look around the table and I see loved ones on all sides. I hope that this tiny life growing inside me will inherit wonderful traits from each person - both through genetics and later, through imitation. Surely one heart cannot take so much love. Maybe this new little beating heart will somehow sense it and grow to learn that the more you love, the more love you have to give. If I could have only one wish for this baby, it would be that she would love people with all of her heart!"

As I continued to look through the boxes of things, I started going through pages and pages of Ellie's art work and writings. One of the papers I found in the box was something Ellie wrote. It said "I like to help other pople. I like to rite and to dro. I like to seng songs and make things and deckorate. I love my famillie. The end." The one thing that God chose to bless her with, over and above all of Ellie's special qualities, was an extra big capacity to love. He filled her up to overflowing with the kind of love that I dreamed for her when her own heart was just starting to beat. In the grand scheme of things, Ellie's 9 years were like the blink of an eye, but she spent them wisely. She loved to the fullest.

Today I just miss her. Really I miss her everyday, but today I choose to really focus on all of the quirky, lovable, and crazy things that made her my Ellie girl. She could push my buttons so hard that I wanted to scream, and then turn around in the next breath and love me so sweetly that my heart hurt. She was complicated and lovely and funny and wise. And I REALLY really miss her. Badly. I would give anything to have her here again, rearranging my house and throwing glitter on the floor. Or insisting that we light a candle at the dinner table even when the meal was thrown together on paper plates. Or patiently teaching her little brother how to play a computer game (and then locking him out of her room because he is a pesky little brother, after all). Or snuggling with her daddy on the sofa. Or snuggling with ME on the sofa!

Then I realize that Ellie's reality is not mine. I miss her, but just for me. For Ellie, there is no more pain... no more tears... only joy and love and peace that have no end. So I guess God's birthday present gets to trump mine... again. Drat. I can't compete with that.

Wednesday, September 08, 2010

Please vote for this idea!!

Hi guys! I just wanted to write to ask you all to vote for something through Pepsi's website. If this idea wins, they will get $250,000 to spend on Neuroblastoma!

Here's the overview:
"Arms Wide Open Childhood Cancer Foundation is working closely with scientists, researchers and doctors who are pioneers in the pediatric cancer field, who are on the forefront of bringing many alternative therapies into clinic which could prolong the lives of children diagnosed with Neuroblastoma until a cure is funded. Right now only 30% of children diagnosed with Neuroblastoma will survive, but because it is an "orphan" cancer, research funding is limited as pharmaceutical companies do not see the efforts as profitable. Recognizing that children should not be viewed as a profit, but, rather, our investment, Arms Wide Open raises money for alternative therapies and actual treatments these children so desparately need in order to survive."

So please go to the website (click on the title of this post) everyday and vote! You can also vote via text every day:
Text 102653 to Pepsi (73774)

Thanks so much!

Monday, July 05, 2010

Facebook ate my blog!

6 months!! It's been SIX months since I've given you a decent update. I could tell you how busy I've been and how all of the weeks and months just blur together like one big lump of time. But I choose to blame Facebook. It is just soooo easy to throw out a quick one liner every so often than to think of a real update. Even though it's been so long, I don't feel like I have much to say. John is sweating his body weight daily in this Florida heat. I work a lot of hours, but LOVE my job so much! My boss is really great and there are constantly new ways for me to be challenged. Ethan is enjoying his summer and will be starting first grade all too soon!

I have a friend who wants to come over and take photos of the house, so when she does, I will post those. I would tell you that I could just go around and snap some photos to post, but we all know that would be a lie... sorry.

I will try to do better about getting on and giving you updates. I truly have not meant to go this long without checking in. If you are on facebook, please friend me, and at least that way you will hear from me a bit more frequently.

For now, I will leave you with today's FB post:

Sarah Skees is following dry slime trails around Ethan's room to find his pet slug that got loose sometime in the night. Long story... But the short story is I am NOT amused. Slugs do not make good pets.

M.G: LOL LOL!!!!

K.S.:Oh no Sarah! That is so yuk. We have those things outside and they are gross. I have to constantly tell my kids not to even think about touching them.

Sarah Skees:I have no idea what possessed me to allow such a thing. The funny part is that Ethan wouldn't even dream of touching it. When he realized it was lose in his room, it was all he could do not to throw up. After hyperventilating over a bucket for about 10 minutes, he is now safe on the sofa watching a movie - but the bucket and cold washcloth are close at hand...

T.W.: I'm....sorry....hahahaha! No, really I am but it is funny. I never thought he'd take me up on the offer to put it in a jar....and I figured it would live outside on the porch. Ummm, how exactly did the slug unscrew the lid and escape?

D.L.: Oh that is too funny. Did you find the slug? And I have to know also how did the slug come to unscrew the lid and escape?

Sarah Skees: Well... I was caught between feeling badly for the slug in the jar, and the little boy with big blinky blue eyes who desperately wanted a pet. To stall until John got home, we put some grass in the jar, turned it on it's side, and connected it to another jar with a plastic bag duct taped to each jar, with holes for air. I figured we'd deal with it today, but in the meantime I wouldn't feel like we were being cruel to the creature. My plan was to convince Ethan that slugs don't make good pets. Half an hour ago, Ethan sadly shook his head and said "slugs don't make good pets." See? I'm brilliant! BTW, the holes were very small, but the overlap in the plastic that wasn't completely duct taped, not so much...

D.L: I see where and whom is to blame now but did you ever find the blessed slug?

Sarah Skees: No, slug is still MIA. I am currently trying to bait him with a dish of flour/sugar water (self rising flour because I have no yeast). Beer would be better, but alas, I have no beer...

Sarah Skees: Ethan is on the sofa and I am on the bed... our feet are up off the floor and we are waiting for John to come home. :-)

D.L: If I was in Florida I would come to your rescue but I would probably not be of any good because I would be laughing too much. T.W., you need to go fix this - you do realize that this one is on you! happy slug hunting. lolololol

Sarah Skees: Thanks D.L.! It's nice to be rescued in spirit... the thought does count, you know! :-)

Sarah Skees: I'm happy to report that "Syd" the slug has been found... by Ethan. Ethan is currently sitting on my lap shuddering over and over because he accidentally touched it. Syd was curled up inside a box of legos (that Ethan moved to the living room to escape any possibility of running into Syd) and was found when Ethan reached in to pull out a lego. This is the stuff of nightmares for this little 7 year old boy! And now... he wants a Catfish. Heaven help us all!

J.H: Wow...you seriously might want to consider a dog...MUCH less drama! :0)

D.L.:Sarah Just get the poor boy a puppy and everything will work out.

R.D: Ohhhhhh!! That would just be the beginning of a world of woes!

V.A.: The puppy would have found and disposed of the slug for you too! No fish for pets...they either die too easily or live forever. We had Methusafish. Stupid goldfish we won at a school fair when we living in a hotel because our house was being fixed after the Northridge earthquake of 1994. We went home to our dual rooms that already housed four ... See Morepeople and a 60lb dog with three fish. One was dead in the morning. One last a few days and the last one, with a life expectancy of 6 months, last NINE years. NINE YEARS!!! I kept having to get him a bigger bowl. And how big a bowl does a catfish need? I did see a show on Dogs 101 on Animal Planet about 2 families that share a dog. maybe you know someone that would do with you! But the slug story is too funny!!!

Sarah Skees: John and Ethan are re-locating the slug to a pile of dead leaves in the back yard as we speak!

So, see what you're missing by not having me as a friend on Facebook? :-)

Saturday, January 30, 2010

Nancy Mankins Hamm: The BLook Club...

Nancy Mankins Hamm: The BLook Club...

Check out the latest on my Mom's blog!