This post was written by Kayla Dickhoff, who lost her daughter Jocelyn to cancer in July 2013.
How have birthdays changed since losing Jocelyn?
After thinking about this, I realized the answer is quite complicated and lengthy. Not only has her birthday changed, but birthdays before and after her death have changed as well.
On June 12, 2019, we will celebrate what should be Jocelyn’s 13th birthday. If she were here with us, I imagine she would have a party with friends from school like the one she had when she turned 6, right after finishing kindergarten. Because of her multiple relapses and being told a cure was not to be (and not knowing how many more birthdays we’d get to celebrate with her), we threw her a party I’m sure her friends still remember today.
We had crafts planned and a bouncy house set up. As we got invitations ready, Jocelyn told me she did not want any presents. She asked those who wanted to bring her one to donate to her team for the Hope Run for childhood cancer research that upcoming July. Thanks in part to those friends, she raised the most money that year and won an iPad. If not a party like this one, she may have chosen a smaller gathering of a few good friends. Maybe like the one that nurses and volunteers gave her the following year while in the hospital on hospice. My goodness, it’s hard to think about the difference between those two parties. At age 6, she had a future. At age 7, we were planning to fight cancer for yet another time.
For some time, Jocelyn had been asking for a baby sister – one who had not been in the plans at that time, but as some say, God works in mysterious ways! Our beautiful, dark haired Jocy look-alike came on May 8th, 2013, just one month before she was to turn 7 and, unbeknownst to us, two months before she’d leave us. Baby Harper was named by Jocelyn, a gift from her big sister that she will have forever. Little did we know at the time of Harper’s birth that a tumor was winding its way around Jocelyn’s major vessels and heart.
The entire week of Jocelyn’s 7th birthday was spent in an emergency room or a clinic of some sort. It was the very following Monday that we learned it had found its way into her chest. I had not registered how severe and terminal this relapse was until that Friday the 21st when an echocardiogram showed lots of fluid surrounding her heart. She needed a pericardial drain placed immediately. She was admitted to Amplatz Children’s hospital that day… and never made it back home.
After living almost her entire 7 years as a cancer patient, Jocelyn chose to end treatment on Saturday June 22, 2013. That very day I started working on getting her transferred to our local hospital to be closer to family and friends. It was there at Rice Memorial Hospital where she was given probably the BEST party ever! Volunteers from the local college’s school of cosmetology treated Jocelyn and three of her best friends to manicures and pedicures right there at the hospital. Strangers who had followed her journey closely on CaringBridge provided pizza, cake and ice cream. And perhaps the BEST surprise of all was arranged by Anne, one of the ER nurses who adored Jocelyn. Somehow (I still don’t know how) she was able to arrange a private screening/preview of the movie Despicable Me 2 that wasn’t due out in theaters until the following week!!! Despicable Me was her favorite movie at that time, and she was so looking forward to seeing the sequel. We are so grateful to Anne for making that opportunity possible because we did not know how we were going to be able to get her to the theatre in her condition.
As I write this piece, I have realized this year’s June calendar falls on the exact same dates as Jocelyn’s very last June, which brings back all those memories so much more vividly.
Each year as Harper gets older, our family’s season of grief begins. There is a deep sadness that surrounds her birthday and continues through the summer and early fall when school starts. Every June, rather than plan for and prepare a party, I plan a strategy on how I am going to deal with and survive the grief surrounding another birthday without her – a strategy not only for me, but also for the grief felt by my husband and my surviving children. We try to do something together as a family each year to celebrate her life, whether that be a simple dinner with cake and ice cream or an activity we don’t normally get to do, like mini golf. This year, thanks to a very kind and thoughtful family, we were gifted a timeshare to Steamboat Springs, Colorado. A vacation like this, or any vacation for that matter, was something we were never able to do with her. We’ll be there the entire week of her birthday.
Three and a half weeks later we will celebrate, scream and cry as July 6, the anniversary of Jocelyn’s passing, comes and goes. That day will forever haunt me. It brings mixed feelings about the end of her life. As sad and angry as I am that she had to die, I know a cure on earth was never to be. In the end, the decision was hers, and I respect that more than anything. I want her back in the worst possible way. Just one more day. Can I have her back for just one more day?? But one more day would never be enough. And I know if she were still here, she’d be fighting cancer, and that is no life for a child.
Jocelyn should be entering 8th grade this September. It’s hard to imagine what she’d look like or what kinds of things she’d be interested in. I don’t see her friends very often, so I have no idea what’s popular with them at the moment or if she would still have the same friends. How big would she be? Would she be interested in choir, band or sports? I really can’t imagine her any bigger than she was when she passed. Harper, who just turned 6 in May, is the same size Jocelyn was. Liam, who is 7 and a half, has Jocelyn’s spunk and spirit. I laugh sometimes when I hear him say things he probably shouldn’t because it reminds me of her quick-witted mouth and sassy attitude. What I wouldn’t give to have her roll her eyes at me again! I smile thinking of a picture of her and me where she’s doing just that!
Before our oldest son, Reid, who’s now 10, turned 7, I experienced a lot of anxiety and trepidation thinking about how he was going to be older than Jocelyn soon. I was literally sick to my stomach thinking about it. That day came on February 28, 2016. As with her birthdays, my therapist and I planned a strategy that included practicing a few coping mechanisms. Never before had I thought I’d ever need a therapist to get through one day! Grief, as it turns out, affords many opportunities for this. (Thank you, grief.)
Since Jocelyn’s passing on July 6, 2013, we’ve added to our family. I will always believe that Jocelyn had a hand in giving us these perfect additions. She had always wanted girls to outnumber boys in our family and now we do! Everleigh, born on November 16, 2015, is a spitting image of Jocelyn and has been since birth. I’ll show her Jocelyn’s baby pictures, and she tells me it’s her. I can’t wait to see if she has any of Jocelyn’s other characteristics as she grows up.
Hazel is a petite little thing. Born on November 4, 2017, she resembles Jocelyn’s spunky and adventurous side. “No” is one of Hazel’s favorite words right now, just like Jocelyn at this age. That word served her well throughout her short life. Unfortunately she wasn’t allowed to use it for the big things like chemo, surgery or MRI’s. On each of their birthdays, I think about Jocelyn and thank her for those two beautiful souls.
We were so blessed to have been given 7 years with our first born. From day one she proved to us she was a fighter and was going to give this life hell. She did just that and more. She is the bravest person I know and has left us a legacy we will never forget. We love you to the moon and back and back and back and back again, baby girl.
Written by Kayla Dickhoff
Kayla is mother to six children – Jocelyn, Reid, Liam, Harper, Everleigh and Hazel. Jocelyn was diagnosed with rhabdomyosarcoma when she was just a year old. She endured many months of treatment and was declared No Evidence of Disease in 2008 and remained cancer-free for two years until a devastating relapse in April 2010. After battling cancer for much of her life, Jocelyn passed away on July 6, 2013. Read more about Jocelyn’s story here.