Written By: Kathy Glow
Today is the two-year “crapiversary” (as I call it) of our precious son Joey’s death from cancer. All week long on my blog, I have been sharing some of the entries I wrote in our Caring Bridge journal from when he was ill.
It both heals me and hurts me to look back.
It heals me as I read and remember some of the sweeter, funnier times we had with Joey. Despite the fact that he was so sick, there were still times of laughter and humor. Despite the fact that the brain tumor robbed him of much of what made him uniquely Joey, there were times when his beautiful personality still shone brightly through and gave us morsels of “Joeyness” on which to cling.
It hurts me deeply to relive what he went though, what we all went through. To see the progression of the disease on his body, on his personality, on his spirit. And even though I’ve thought often of that moment that he died in my arms, reading it again –reliving it again- hurt just as much the second time.
Now the struggle is on to decide how we will remember Joey, how we will teach our boys – who were six, four, and two when their brother died – to remember him; and especially how to tell Evan about the brother he never had the chance to meet.
There are certain photographs that I will never remove from my walls and certain frames containing Joey’s picture that will remain on my coffee table forever. That way, we can see his smiling face every day and remember the joy he brought to every situation.
There are certain toys, games and puzzles that I will never give away because they were Joey’s favorites. When the boys play with them, we talk about how much fun Joey had with them.
We kept his cherished stuffed animals, Stripey Kitten and Spotty Frog, and Jack and I often fight over who gets to sleep with them. I noticed him the other day with his toy camera “posing” Stripey and Spotty for a picture and saying to them, “Oh you smell so Joeyish.”
Certain things always make me think of Joey – cats, turtles, the color green, Go Diego, Go, camouflage, pineapple, art supplies, being outdoors, fireworks, yellow cars. And when I think of Joey, I almost always say what I am thinking aloud to anyone who is near me.
We are all dealing differently with this loss in our lives. I cannot visit the cemetery, but I can look at pictures of Joey and write about him and talk about him. My husband is the opposite. He finds solace in visits to his grave, but finds it too painful to look at pictures or read what I write about Joey.
Jack, his twin, doesn’t talk much about Joey, but does want to play with his stuffed animals. When we talk about Joey being gone, as if out of nowhere, Jack will insist, “Joey is still with us. He will always be with us,” then he goes back to whatever he was doing.
Adam is the one I worry a lot about. He idolized his older brother. Adam talks openly about how much he misses Joey and how he wishes Joey could be here for certain events, like when he finally learned how to ride his bike without training wheels (I insisted that Joey could see him, and was very proud). He will cry at night sometimes, and at one point, put most of the framed pictures of Joey in his room.
Colin, who was really too little to fully understand what happened, is slowly learning that Joey is not coming back. The summer after he died, Colin would say things like, “What if Joey didn’t die, and he could come on vacation with us.” We would painfully have to explain every time that he did, in fact, die and could never come on vacation with us.
Evan is the hardest because he will only know Joey from what we tell him. I have already started whispering to him about his brother Joey and how fun and sweet he was. I have already begun telling him that he reminds me so much of Joey. His constant smile, his curiosity, his love for his brothers and the outdoors, and the way he smiles at me when he’s doing something he knows he’s not supposed to – these are all characteristics that Joey had.
I feel conflicted that we haven’t done much to “officially” honor Joey or his legacy. We’re not ones to be crusaders for any type of cause. The walks for cancer, the fund raisers, and the hoopla – it’s all still too painful right now.
We are honoring Joey in small ways, though. Joey’s preschool teacher set up a Joey Glow Memorial Scholarship Fund to help families cover the monthly cost of preschool when bills and military deployments and other life obstacles take precedence over school. Joey loved preschool so much even when he was sick, and his teacher doesn’t want to see anyone miss school for any reason.
Also, for the past two years, I have been collecting gift cards to hand out to the families who have a child receiving treatment in the hematology/oncology clinic at the hospital where Joey received his treatment.
It got to be so large an endeavor, that we have set up a fund at Children’s Hospital and Medical Center in Omaha called the Joseph Glow Memorial Fund. The fund receives donations of cash or gift cards to give to the families of pediatric cancer patients.
All of the people at Children’s are so amazing. I’ve always wondered how the nurses, doctors, assistants, staff and volunteers can do that job everyday knowing that some of these children will not beat their cancer.
They care for the entire family of their patients. We always felt like the others boys were made to feel special, too.
About half of their patients come from outside of Omaha to Children’s. They have their own Rainbow House- a large home away from home. Families may have a private room and a place to sleep when their child is hospitalized or if they are coming for a medical appointment.
Child Life Specialists are on staff to provide individualized care, developmental assessments, and resources for siblings, parents, peers and schools.
There are support groups offered monthly, weekly special events for patients and their families, weekly pet therapy visits from trained therapy dogs (this was Joey’s favorite activity), and a medical play program to prepare children and families for surgery.
There are even special trips and programs for teens and a team that offers palliative care (end of life).
In addition to all that Children’s offers for families, we thought it would be nice to provide gift cards as an added piece of mind for families – a favorite cup of coffee, a meal away from the hospital for a night, the relief that comes from knowing that you will have enough gas to make it home.
Passing out the gift cards to the families is a win-win for everyone. Christy Hogan, Certified Child Life Specialist at CHMC, said the gift cards are “so much fun to give- and the parents are always in awe of the gesture!”
Joey would be tickled to know that we are putting smiles on people’s faces.
And in the end, that is what matters. That is how we should remember him. With a smile on his face, a laugh on his lips, and doing something that makes others happy. If it could be that simple for the rest of us, the world would truly be a better place.
If you would like to donate a gift card or money for a gift card to families in Nebraska battling cancer with their child, you can mail it to the following address:
Children’s Hospital & Medical Center Foundation
8401 West Dodge Road, Suite 160
Omaha, NE 68114
*Donors should indicate on the memo field of the check or in a note with the gift cards that this is for the Joseph Glow Memorial Fund.