How to answer the question, “How many kids do you have?”
Seems simple right? You, just list them off.
How do you answer that question when one is missing? They were physically here with you. Laughing, crying, a vital part of your family?
Most of the times it’s strangers who ask. It doesn’t go much further than…what are their ages? Boys or girls?
However, at times these people who ask are neighbors, new acquaintances, etc.
There in lies the uncomfortableness of it all. People either accept you or ignore you after they find out. I haven’t found it to be any different…unfortunately.
Day 17:
The sibs speak out
September. It’s a tough month for any kid. They go back to school after what seems like a brief moment of freedom.
For Chase and Ella, it’s not just the start of a school year, but also childhood cancer awareness month AND their new brother’s birthday month.
While Paul and I sort through our own feelings, I thought it was best to just ask them how they are handling it.
School is going great. Both love their teachers and their classes…win win!
I ask, well how else do you feel this month? In unison they reply, “sad.” “Why is that?”
“We miss Shane and Will reminds us of that.” Both look at each other and Chase explains that Will is just like Shane in that he looks like him (and himself) and he loves to play.
Chase said Will is always up to chasing him around.
“Will plays with me like Shane used too.”
Ella immediately starts to tear up. She says, “He steals my dolls.” I laugh. She looks at me and says, “you know!”
I do know. Shane loved to tease Ella. He used to grab her dolls and run laughing his high pitched little giggle. He used to take the clothes out of the bin faster than she was putting them back in.
Most of all, he took her beloved “Georgie.” Will does too…all in good fun.
We talked some more and they too realize the bittersweetness of celebrating Will’s birthday. They are both super excited, but with a twinge of sadness.
We discussed other thoughts and feelings a bit more about the addition of Will to our family, how we grow together with Shane by our side and the healthy balance Paul and I have created for our family.
Chase and Ella both said that they never feel like we put the memory of Shane higher than themselves.
Whew. We are doing it the right way.
We want them to always remember Shane and know that the foundation and the work we do is very important.
We never want them to FEEL as though they are not as important.
In the world of childhood cancer, I call that a win.
Day 16:
It was a beautiful day, albeit a bit humid and unseasonable hot….more than I expected.
I’ve been spending the days as busy as I can be. It helps take my mind off of wandering thoughts and nagging ones.
This week, we will celebrate Will’s 1st birthday. It’s been an incredible year with a remarkable little man. So much about him reminds me of Shane and yet he is his own person.
This is the tricky part. We are blended.
Our life with our child (literally a baby) who has cancer.
Our life with the loss of our child to cancer.
Our life with the loss of one child and the blessing of another. It’s hard to balance the scale at times.
Did you ever wonder if there is a connection between our loved ones who have passed and those here on Earth? Even if they have never met?
I witnessed this today.
Will and I were jamming in our room. The song “True Colors” from The Trolls soundtrack comes on.
Will crawls to me and gestures for me to lift him up. Then points to Shane’s picture on the dresser. What he does, brings tears to my eyes.
He puts his head to Shane’s picture and puckers up a kiss.
He then grabs the picture and wants down. That was the moment I was able to capture. The rest was unexpected and filled my heart.
Back story: The song “True Colors” was used in a childhood cancer awareness video featuring CHOP cancer patients. Some of those patients were Shane’s friends…Antonio and Cassidy.
Ella in particular cherishes this song. Every time she hears it, she thinks of Shane and Antonio.
How would Will know all of this?
When your child has cancer, a lot of people make assumptions about you.
-People assumed that Shane’s cancer was genetic.
It wasn’t.
-Some assumed that I did something, i.e the food I ate.
Nope. We only eat organic fruits and vegetables and I’m pretty sure at the time, Paul was annoyed that I always shopped at “whole paycheck.”
-Many suggested that St. Jude’s could save Shane.
Unfortunately, you cannot seek help from St. Jude unless they are studying that exact cancer at that exact time. They weren’t.
-Most said to us, “I couldn’t even imagine.”
Honestly, you can’t, until you’re faced with it.
-Others said “you must be so strong.”
As the saying goes: “you don’t know how strong you are until you have no choice.”
We had no choice.
Shane’s cancer (alveolar rhabdomyosarcoma) was treatable in terms of keeping him at a decent quality of life, but for how long? It is not curable because it’s known to come back. When it comes back, the fight gets harder.
We had no choice, but to give him chemotherapy (at 8 months old!?!). Surgery was not an option for him based on the initial tumor’s location. We eventually chose radiation to attempt to keep him alive longer in hopes of a clinical trial or new treatment option.
Make no assumptions, we fought for Shane.
We continue to fight for children like Shane.
If it were your child, you would too.
Childhood cancer is not rare.
Childhood cancer is the #1 cause of death by disease for children in the United States. Childhood cancer receives less than 4% of the federal budget for cancer research.
#SFD #HelpShaneFightCancer #ARMSaware #letsdobetter
The weight of childhood cancer
During the month of September, I try to post a little bit of our childhood cancer journey. Sometimes I slip up and get busy and other times, this month…the memories, our reality is just too overwhelming.
I feel as though it’s our responsibility to take part in raising awareness for childhood cancer. I am not alone.
Speaking with some advocacy peers tonight, I realized the insane reality that WE as parents are leading the awareness campaigns. We all deem this to be a responsibility of ours, but as one of them mentioned, it takes it’s toll.
So, that’s all I have to say for today. I wish I could say the month hasn’t gotten me down yet, but it’s only the 12th and I can’t even remember what I walked into a store for. I’m thankful for the alarms on my cell phone to remind me where each child has to be on what day and time.
Please join me in helping spread awareness this month. Help Shane’s voice be heard.
# SFD #HelpShaneFightCancer #letsdobetter #ARMSaware
I try to ignore it. Brush it aside like my behavior and mood is because it’s back to school or because we were traveling or I’m trying to find our groove.
Sounds good, right?
But, I can’t deny it. My husband knows me better than anyone, well except for my mom.
People assume that having Will has healed our broken hearts. I’ve even had to defend myself from numerous comments within the childhood cancer community because we’ve had another child, while others have just isolated us.
Of course, our hearts are fuller and we get another chance to experience the “firsts” and the “lasts” of having another baby.
But, we are also reliving those moments we had with Shane. Not always, but certain moments, looks, actions and of course milestones.
Will’s 1st Birthday is in two weeks.
My grief has crept up slowly, but now we know what the trigger is.
Childhood cancer does that. It causes PTSD and other anxieties in parents who have lived the journey. We’ve watched, comforted and cried through life’s toughest and most beautiful moments.
We are incredibly thankful for our partnership with the Children’s Cancer Therapy Development Institute.
As a parent, you feel helpless when your child is fighting for their life. While, our story did not end the way we wanted to, we are able to continue Shane’s fight and legacy through cc-tdi.
The guidance and compassion we received from Dr. Keller when Shane was with us and the continued support from him and his research team after Shane’s death has been inspiring.
Shane’s tumors have furthered their research endeavors for alveolar rhabdomyosarcoma.
While bittersweet, our family could not think of bigger gift than the gift to continue research to help other families so they can have hope for their children.
This month, if you feel inclined to support childhood cancer awareness, please consider a donation in Shane’s honor to continue the research he sacrificed to begin.
#SFD #HelpShaneFightCancer #ARMSaware #letsdobetter
Today Chase and Ella went back to school for the 2018-2019 school year.
It’s a mixed emotions type of day.
Shane would have joined them both.
Today was supposed to be HIS first day of Kindergarten.
It hurts my heart to know there is a missing person who should be standing beside them, taking his first bus ride and meeting his teacher for the first time.
Would he be like his brother and wear soccer jerseys every day? Would he be like Ella and absolutely love school? What would be his special thing about school?
The days and milestones missed will follow us in this lifetime. Today is one of many.
Cancer took that from us.
#SFD #HelpShaneFightCancer #ARMSaware #letsdobetter
Thank you to everyone who battled the winds and came out to Chase and Ella’s Alex’s Lemonade Stand!
Ella’s outspoken poster advertising and Chase’s lemonade distribution led to them raising close to $600!
Many thanks for another successful year raising awareness and research funds for childhood cancer.
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