We’re honored to have Laura Morris participating in the Brighton Relay for Life in Ben’s memory this July. It’s wonderful to see so many people standing up to provide support for cancer research and to those touched by this disease.
Please take a few moments and contribute at her site here.
And head on over to the American Cancer Society website if you’re interested in participating too.
Thank you
My Cousin Neal’s remembrance from yesterday’s service:
Once upon a time, in a land not too far away, there lived a little boy named Ben. Ben was a smart and sensitive and charming little boy who loved puppies and dinosaurs and Lego’s and guinea pigs. Ben lived with his family in a big, colorful house, with lots of stairs and windows and hiding-places, and he had his own room upstairs with lots of toys and pictures of puppies and a light-up rocket ship on the wall. He was a happy little boy who loved to ride his scooter, play with his sister on the jungle-gym his dad had built out in the backyard, and run around and throw the ball for his little poodle, Peaches.
Ben loved his family. Ben’s dad was the biggest and strongest and smartest daddy Ben could imagine, and Ben was happy that his dad was always there to play with him and hold him and protect him when Ben got a little scared. Ben’s mom was soft and beautiful and even smarter than his dad. She knew all kinds of things about animals and plants and dinosaurs and trucks, and Ben loved the songs his mom sang to him when he went to sleep at night. Ben knew that other kids had mommies and daddies, but he thought that he had the best mommy and daddy in the world.
Ben also loved his little sister. Ben had lots of friends but she was his very best friend, even though she was his little sister. Ben loved to laugh and play and chase his sister, and sometimes they would wrestle, but not too rough because she was only little. Even though she was only just a little girl, Ben thought his sister was always very brave. He remembered how one time she was even brave enough to touch a spider with her hand, and another time she petted a giant millipede that was crawling across the floor. Ben liked doing things with his sister, and always wanted to share everything with her.
Ben had lots of friends in his neighborhood. He knew lots of grown-ups, too. His favorite grown-ups were his grandparents. He loved all his grandparents because they knew lots of things about cars and trucks and flowers and always had time to play with him and his sister and let them eat as much ice cream and cookies as they wanted too, but also broccoli because that was Ben’s favorite food next to chocolate.
Ben also loved his grown-up aunts and uncles who always wanted to play with him. Most of the time Ben didn’t like monsters in his house. But it was okay if the monsters were uncles, because then it was fun to run away from them and protect his sister from them, because the monsters were just playing, and really they were only just his uncles anyway. The best thing about seeing his aunts and uncles was when his cousins would come over to play, because they knew how to play best, especially when they played dress-up, or danced, or helped his uncle light sparklers on the Fourth of July.
One day, around the time of his sixth birthday, which was his favorite birthday because he was finally six, Ben didn’t feel quite right. He didn’t know why but he seemed to bump into the walls a little more often, and he needed two hands on the railing to go up the stairs. His mom and dad took him to see some doctors, which was fun but also a little scary. They told him that the doctors said he had a tumor inside his head and that the tumor was making it hard for him to run and play with his sister. But they told him not to worry, and that the doctors were going to do some things to try and make the tumor smaller so that Ben could run and play again and not need two hands on the railing.
After his treatments at the hospital, which weren’t really too bad and everyone said he did a good job but all he did was lay super quiet on the bed really, his mom and dad told him that he could have a wish, and that he could have or do anything he wanted. Ben thought of all the things in the world that he wanted and decided that the very best thing would be a squirt gun to shoot his sister with. Everyone laughed and said that he could have as many squirt guns as he wanted and that he should think of something else, something bigger. Ben thought hard and after a long time he decided he would like to go to the zoo and feed the elephants, which were the biggest things he could think of next to dinosaurs which he knew didn’t exist anymore. His mom and dad smiled and said that was a good wish, and they hugged him and cried a little, which Ben didn’t completely understand.
Ben had a fantastic time at a giant party his school had thrown for him with pizza and spaghetti and ice cream and all his friends and a real band with songs that were sometimes too loud, and he was thrilled to have been made an honorary police officer with a real badge and everything. It was neat to see all his friends from school dancing and playing with his sister, though he still felt a little tired at times. And he had a great time on his trip to Legoland and the zoo in California with all his cousins and the rest of his family, and it was fun and a little scary when he got to feed the elephants.
But he was starting to feel funny again, and once more felt like he needed two hands on the rail to get up the stairs to his room. His mom and dad took him back to see the doctors. They hugged him and told him that the tumor in his head was back again and that he might need to do some more treatments. But Ben was okay with this because although he didn’t like the tumor at all, he remembered how he liked the watermelon-flavored gas the doctors gave him before he went to sleep, and afterward he really liked waking up in the Finding Nemo room too.
* * *
I will always treasure a memory from our family’s Christmas party last year of Ben walking to the table with an entire heaping plate full of broccoli, which he proudly announced was his favorite food. I ask you: How many parents can claim broccoli as one of their children’s favorite foods? Ben and Madie have grown up in the company of devoted, loving parents and family. On the family blog recently, Dean wrote of the importance of “just being dad”. As a new father myself, I am only beginning to learn what the other parents in this room already know: that “just being dad” or “just being mom” is perhaps the greatest challenge of our lives, the most difficult and most rewarding task we will ever undertake. Yet faced with this challenge, Dean and Melinda have excelled beyond measure. Full of patience and perspective, quick to laugh and overflowing with love, I have watched them raise Ben and Madie to be the kind of happy, confident, sensitive, and intelligent people that other people naturally want to be around, that other children follow, and other adults admire.
At one point, at the hospital, when he was first diagnosed, Ben told his mom and dad that he was “a leader in his family”. Hard to forget are the moments when children speak in grown-up voices. At times somewhat shy, I nevertheless I like to think that at that moment, and in his own way, Ben was aware of the challenges that lay ahead of him and his family, and knew that there would be times in the coming days and weeks when he would have to stand in front, to walk ahead, with his family and friends following behind him. I like to think that somehow Ben knew and accepted that he was walking faster down the road that all of us must eventually travel, and that he knew that he now had a lesson to share with all of us about patience, and courage, and accepting the challenges that life puts in front of us with dignity, compassion, and with as much laughter and love as we can muster.
In the last weeks of his life, Ben made frequent requests for Chinese food. I think it took a little while for us to realize that it wasn’t the beef with broccoli, but rather the fortune cookies that Ben was most interested in. Of course, every six-year old likes cookies, but we soon learned that Ben was just as interested in the fortunes as the cookies. Like little treasures, Ben would keep every fortune from every cookie. He told us once that he could give the fortunes away, too, “to people who needed them”. I don’t know if Ben found hope or reassurance for himself in the brief glimpses of the future that those fortune cookies provided. But I do know I that I am grateful for having had the opportunity to know such a kind, sensitive, loving little boy who tried his best to save those treasures, to store up those little bits of hope, and who cared enough to share that hope with anyone who needed it.
Ben’s last days came quickly. He passed from this world without pain, surrounded by his family, in the arms of his mother and father who adored him beyond measure. He was born during an eclipse and he died during an eclipse. That the sun itself was willing to stand aside and make way for both the arrival and the passing away of Ben’s light should tell us something of the kind of spirit he possessed. God has called home one of his own.
And his little sister will forever have an angel watching over her.
Please join us in celebrating Ben’s life on Tuesday, April 4th at the First Evangelical Lutheran Church at 803 3rd Ave., Longmont, CO. Viewing starts at 12:30; services start at 2:00 followed by a chocolate filled celebration (don’t miss this part!).
A few requests…
We’re asking everyone to wear something yellow to the celebration as it was Ben’s favorite color. No need to purchase a yellow suit (“it’s the new beige“) – just add a ribbon or tasteful hat.
I’ve got two moms and a dad with past careers in the flower business. Please make a contribution to one of the following in lieu of flowers:
Children’s Hospital – none of our adventures or memories over the last seven months would have been possible if not for the dedication of the doctors, nurses and volunteers at The Children’s Hospital of Denver.
Ben’s Secret Garden – Ben loved the Memorial Garden at Anshutz Cancer Center where he had his radiation treatment. We’re placing a plaque in the garden for him as well as planting our own “secret garden” here at home. Donations can be mailed to The Steadman’s at 5893 Sparrow Ave., Firestone, CO 80504.
We look forward to a full house on Tuesday and send our thanks to everyone for their love and support.
Melinda was crying when I awoke this morning. Ben spent the night snuggled in between us. She asked me for assurance that we’d all be together again. We placed our hands on Ben’s heart and discussed what heaven is and how to define it for Ben and Madie. We agreed that it would be heaven to spend eternity with our family and that Ben will be an angel waiting to greet us. His heart stopped and we saw him peacefully leave for the place we described.
Ben was born on Aug. 11th, 1999 – during a solar eclipse. He died on Mar. 29th, 2006 – during a solar eclipse. We were fortunate to have six loving years with him. He’s taught me to be a father, a better husband and a better man.
I want to thank everyone for the support that has been provided to our family. You made Ben’s life beautiful and we’re happy to have had the chance to share it with you. I intend to spend the rest of my life repaying the love that you have shared with us.
Ben’s tumor has grown by more than 50% in the last three weeks. The IV line that was installed today should help us have more control over his pain and vomiting. Dr. Foreman says that we need to think of Ben’s remaining time in days instead of weeks. I’ve been asking for some mercy to save him from slowly wasting away and it looks like my prayers are being answered.
We’re preparing Ben and Madie with the information that they need to face the events to come. I have no idea exactly what that means, but I know in my heart that Ben will be free from his cancer and pain. I have faith in an existence beyond our understanding and find comfort with Ben knowing more about it than I do. I am blessed to have had this time to learn from him.
We remain focused on keeping Ben comfortable. Thank you for respecting our privacy and using the comments here to send us your love.
I’ve been working on this post for a while now. I don’t feel like writing tonight, but I need to get this out.
Ben started having headaches Friday morning. He’s had a few headaches before, but we could tell that this was different. He was extremely tired and didn’t want to eat. He vomited up all the pain medications we tried. Our hospice nurse gave us some medicine to control the vomiting and pain. He’s spent the last three days mostly asleep. We’re heading into Children’s Hospital tomorrow morning for a quick CT scan to check for pressure in his ventricles and to get a direct IV line for medications.
Not sure what else to say at this point.
Our local paper did an article on Ben today. I was a little anxious about the story before the interview, but it was really well done. Many thanks to Laurel and Erin for doing such a wonderful thing for Ben.
And a local TV station will be attending our “Unbirthday Party” at Chuck E. Cheese’s for Ben’s classmates this evening. We’ll have our Tivo set to record it and I’ll work on getting a copy online for you out-of-state folks.
Update:
The video is now online here.
My brother Pat and his business partner Fofi used their Jack Abramoff-like lobbyist powers for good and arranged for Ben to feed the elephants at The Denver Zoo. The zoo staff was amazing and went out of their way to make Ben’s wish come true. He was a little scared, but you’re supposed to be around 10,000 and 7,000 pound elephants.
Hold on to your trunk - we got lots of pics…
Grandma Pat gets into the action
Uncle Pat gets a turn
Doesn’t she have beautiful eyes? And Melinda’s aren’t bad either.
(Note to self - get blankets in preparation to sleep on the couch).
Two words - elephant breath.
Grandpa Mike & Grandpa Bill surround themselves with women in order to fight off the winter chill.
Uncle Pete doing his job as Ben’s personal carriage.
Popsicle the polar bear makes another appearance at a Steadman Family event.
Today’s MRI confirmed our fears. Ben’s tumor has nearly doubled in size since his December MRI. It’s pushing against the left side of his cerebellum which is causing the loss of muscle control to his right side. His fourth ventricle is completely squished and his front two ventricles are swelling.
He’s in great spirits and did not require sedation for his MRI despite the nurses fishing around in his hands and wrists searching for a good vein to use for his IV. He tires very easily – which makes sense when you consider the amount of activity he’s been having and the amount of work his body has to do to compensate for the loss of motor control.
Melinda and I are at a complete loss on what to do right now. We have some follow-up meetings with Ben’s doctors tomorrow and will most likely be seeing our counselor before making any decisions about clinical trials or hospice care.
We’ve had several people asking what they can do to help and we honestly don’t know at this point. There are so many decisions to make and so few good choices. We’ll be putting a call out as soon as we know what we need.
Thank you to everyone who posted a comment today. It was wonderful to take a peek at them throughout the day and feel some comfort from our family and friends.
Ben’s having trouble with his balance and we’ve scheduled an MRI for tomorrow. The symptoms of his tumor have come on much faster this time than when he was first diagnosed. We can’t really say much else until we see the results. All of our fears have suddenly come crashing in around us and we’re hoping for any sign of good news tomorrow.
We need your thoughts and prayers now more than ever. We’ll be checking the comments here in between pacing at the hospital - so please take a minute and leave us a note. Thanks
