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Running on Empty
By Margot | June 20, 2010
Guest commentary by Neil:
Even with Sam gone, I love this blog. It serves as a diary of our life and I can always go back and relive the events of the day.
Father’s Day. What can I say. From an activity standpoint, it was a home-run. We had a “Easter egg hunt” (we’re big on those even on non-Easter Sundays) with clues that led to tickets to the Elton John concert in July. Lawn seats because you know Andy and Charlie will want to run around. The boys are going to their first concert so we thought we would make it something great so they would never have to swallow hard when they’re adults and admit their first concert was something horrible like Lady Gaga. Or God-forbid Kenny Chesney. (The trivia-minded will want to know that my first concert was Chicago at Hershey Park Arena. It doesn’t get much better than “Saturday in the Park”.) And before I forget, we went to the Padres – Orioles game. 3rd base, 19 rows up. Great seats and the Padres struck out with a guy on 3rd in the bottom of the 9th.Â
Uncle Matt joined us for our Annual Water Balloon Fight at Kate Sessions. Note to mom: don’t throw balloons at Charlie’s eye or he will cry 🙂 Note to Andy: this is the last year you will be allowed to throw with your left hand. At age 7, he has a 90-mph fastball but we also know him well enough to acknowledge that with his right hand, he wouldn’t be able to pick-up a $1-million dollar bill so we feel safe restricting any future Water Balloon Fights to Andy having to use his right-hand.
We went to the beach — Charlie danced in/out of the waves; Andy boogie-boarded and did great. The surf was rough and the sun was warm.
We barbecued steak at the pool and the boys swam and jumped into the hot-tub.
We watched a little bit of the US Open and were very glad that someone not named Tiger won. Especially on Father’s Day.
I miss Sam terribly. I think of him when I see other little boys in cute skater shoes, sitting on their skateboards and just hanging out. Boy he would have been so cute. He would have LOVED to hang out on his skateboard and kick back with his friends. I would HAVE LOVED to just see him grow up. He always just made me laugh because he loved life and he was a goofball with a great smile.
I think of him when I see the adorable little girls in his 4th grade class – I miss the whispers between Sam and Andy about which girl is cutest and which girl they like.
It just kills me that Sam got a death sentence: not ADHD, not diabetes, not something that would be more chronic. It’s very hard to understand and accept. I read books on God and Heaven and am thankful that I have friends like Ron who keep suggesting books to me. My God and Heaven library is 30 books strong and growing. It’s important that I come to terms that Sam is in a safe place; perhaps he’s even in a better place. But he’s not with me and it hurts.
I think there is a God. I think there is a Heaven. But those questions which were so academic while Sam was alive have a sense of urgency now that is very hard to explain.
I reach out to my extended neuroblastoma family for comfort and support on a daily basis. With other parents who have lost kids, we can end other’s sentences; we know there is someone on the other line who knows how we feel even when our feelings are lost or crazy or crushed.
It helps to watch video of Sam. I love his voice and I love seeing him interact. He seems alive still.
I am thankful for Andy and Charlie. They are best friends. They laugh and love and live. They remember Sam.
Andrew wore his TeamSam shirt today (thank you Andy and Melissa!) and wore Sam’s bathing suit to the beach. Coincidentally, another little boy, Nick Hulquist, had the same suit on. I love looking at other boys and visualizing Sam. I think about the coincidence of another boy having Sam’s suit and whether that should help me feel that Sam is in a better place.
Charlie talks about Sam. Sam’s always sitting on the brightest star in the sky in Charlie’s mind. Charlie is a smart guy.
Andrew and Charlie – gosh, I love those guys with every breath I take. And I’m so lucky to have them.
I go up to Kate Sessions Park and read his plaque. I don’t know why – I just feel that it helps me connect with him. And I hope that if his spirit is rolling through the canyons, he’ll appreciate the love I have for him. I don’t want him to be forgotten.
I sit and stare at his remains in the urn in our living room. I wouldn’t have them anywhere else but why God? Why? Why take the most beautiful little boy in the world away from his dad? Why do that? And how is that fair to his brothers – beautiful boys in their own right who now get love from a fractured dad? It doesn’t make sense. And it just stinks. And I work really hard to make sure that they don’t pay a price for my heavy heart.
I don’t know why I write this. I just hope that somehow things will make sense someday.
Topics: Progress Reports | 17 Comments »
June 21st, 2010 at 3:25 pm
Thinking of you, Neil, with prayers for comfort and peace. I’m glad you have your faith; in this world, what else do we have?
So many of us hold you, Margot, and the boys close.
June 21st, 2010 at 3:43 pm
Neil – thanks for sharing. I don’t know if things will ever make sense but I know it helps me to read what other parents in this crappy situation are thinking and feeling. It helps me not to feel so alone in this. I have had so many of the same thoughts and I am sure my husband has too. Father’s Day was not an easy day for him..we brought our firstborn, newborn and only son, Nathan home from the hospital on Father’s Day 10 years ago.
June 21st, 2010 at 3:58 pm
Redman-as you ask the question why Sam was taken from you recall that God gave his only son to us for our salvation.
Jesus Christ had a horrific physical trial and I have often thought His trial compared to the trial of modern day cancer treatment.
As I wrestle with all of my conflicting thoughts about Sam’s life and death I often compare Sam’s liberation from this world to Jesus Christ rolling back the rock and ASCENDING – returning to His rightful place.
When Sam died I remember this incredible energy and all of us witnesses, raising our hands ad hoc, as Sam sprinted (ASCENDED) towards heaven.
I remember you charging Matt and I with liberating your home from the tools of cancer-all the machines and all the pills and bandages and needles- we took them out of the house and the house actually smelled differently. The trial was over!
I say these words because I have no doubt that Sam, traveling the same route as Jesus Christ, is with God. And Grandmom. Playing with the other children who have been called Home.
As I read these words of yours I think that Sam can not be forgotten; he is in a place of great love. I think that Sam wasn’t “taken from his dad” but was instead, returned to God. I read the word fractured and I think “no, trialed”.
When Jesus Christ died, he died for our sins. Since then, the key question, the key trial, is whether or not we individually believe in his death as our salvation. If we answer affirmatively to this question about Jesus Christ than we must also answer that our lives in this realm are simply trials, some better, some worse, to test our own convictions and beliefs. Your trial, perhaps the worst of all, is a measure of your belief and it really is up to you to decide if you are “fractured” or “trialed”.
I pray for God’s calmness, God’s grace that you find energy and belief in this time and in His love.
June 21st, 2010 at 7:31 pm
AAAAHHHH……Neil……what can I say??? This stinks, but you guys are doing so good…especially with those boys that you love so much….. I love what Tom Hutch wrote….I guess we really do need to think of this as a “trial”…..A test if you will….to measure our faith…..and ability to rise above…..
So glad your my friend….but, so sad we have to walk this road together…..
rhonda dudley
June 22nd, 2010 at 1:57 am
Hello my friend,
You are a great man and an amazing father. I wish I had some magic words or answers but unfortunately I do not. I share in your pain and confusion and miss Jenna with every cell in my body. The only thoughts that get me through each day is that she is with me and that some day I will be able to hold her and hug her and give her the biggest “mushka” kisses again. I do not have the comfort of knowing when I will be with her again, but that is my cross to bear and I will carry it for the rest of my time on this earth. Compared to all she went through for 3 of the 6 short years she was here, I can do that .
June 22nd, 2010 at 4:21 am
Thinking of all of you and remembering all of you! God Bless, Love, Ellen
June 22nd, 2010 at 3:00 pm
My heart aches for you. I still think of your family and pray for you all.
June 22nd, 2010 at 10:03 pm
Neil,
You were the best father a beautiful boy like Sam could ever have.
L,
Meryl
June 23rd, 2010 at 12:29 am
Neil, It is good to hear some of my thoughts written down. It is hard for me to get things put together..everything is still a jumble…in my mind and my heart. It gives me comfort to read your words and hear that many of our thoughts and questions are the same. Maybe I’m not loosing my mind…
Much love
Lisa
June 23rd, 2010 at 7:29 am
Somebody much wiser than me once said “its easy to leave than be left behind” please read “The Shack” William P Young. I have followed your story since forever first from the UK and now from Australia. You are an amazing Family with your very own Angel in Heaven.
Michelle
June 23rd, 2010 at 4:51 pm
Neil,
The same strength that made you a fearless crusader for Sam will see you through this, I’m sure. I ache for you and can’t imagine your pain. I hope you can feel the love and support coming to you from all angles and pray that you will find small moments of peace as you work your way through this. You’re not alone. Sam is not alone.
With love,
Pam
June 25th, 2010 at 3:29 pm
I don’t think anyone can say anything more powerful than what your brother did. Know that our thoughts and prayers are with you & Sam will NEVER be forgotten.
June 25th, 2010 at 6:19 pm
It always helps me to write my thoughts out, hopefully it is the same for you. Your family is always in my thoughts! Missing Charlie and his classmates already!
Take care, Malea
June 26th, 2010 at 9:15 pm
Thinking of you guys today while sit in a hotel in texas… Angela (Madison’s Mom)
July 1st, 2010 at 3:39 am
Margot and Neil,
I think of your Sam often. You are in my prayers. I hope you can feel the peace that our Father in Heaven can give. I know Sam’s little spirit will always be with you and you will be with him again.
Kelly Ratliff
DJ’s mom
July 2nd, 2010 at 2:42 am
Because of Sam….http://www.healthcanal.com/drugs-approvals-trials/8981-Sholler-Studies-Old-Drug-for-Neuroblastoma-Treatment.html
July 11th, 2010 at 11:21 am
Hi Neil and family,
I think of you all so much and just had a chance to sit and look over your last few entries as I was wondering how you are all doing. It is with tears in my eyes that I read this Father’s day entry. I think that you are all doing a phenomenal job. I never had the chance to meet Sam but had the pleasure of meeting you Neil at the NB conference in Vermont last year right after Jack relapsed. I feel like we all get to now this awesome kid along with his awesome family a lil more by reading all of your great activities and memories about Sam. Thanks for keeping us all in the loop as there are so many families that we have in common that think the world of you all. Myself included. Jack just started the vaccine trial in March at Sloan, so far, so good. It is something that we have been hearing and learning about since the first time we went through treatment in 2004. I ofcourse continue to be petrified of what could potentially await us at any given moment but try and focus with what we have at hand. Relapsing after 5 years clean was certainly a blow and makes you already not trust something you couldn’t trust anyway. The NB world as you know, has been a very sad place as of late as if it isn’t always already. It seems even more so than usual with catastrophic grenades going off all around us to so many families that we love. I am happy that you are finding peace in your days. You are an absolutely beautiful family, thank you all for continuing to support the fight of this horrible disease. Sam’s fight was certainly one of such valor as was his families. The pix that Margot posted of this summer so far are awesome. I know that Sam is looking down very proud of all of you and that he is with you in your heart every day. I can tell by all of his amazing pictures that this little boy knew so much love from his family. It would have been an honor to know him and meet him personally. I continue to wish you all well and please know that you are always in our thoughts and prayers.
Love, Francesca Demers
caringbridge/jackdemers
PS, I just got a huge chuckle before as we just went to Lady Gaga the other night at Madison Square Garden!! I’m with you on Chicago and Elton John though….I think those are awesome concerts too!!