So I began this past week as reminiscent, yearning for simpler, more secure times when I was not in constant fear of a cough, fever, or even a little paleness, and how it could land Becca in the hospital, upending our entire family’s life. I also mourned the loss of Lily’s childhood (I have grieved for Becca’s lack of childhood throughout this journey). Beginning at the young age of four, she was forced to grow up way too quickly due to the separation from us, as well as our lives revolving around Becca and her health. I pined for the typical parenting challenges most families have that can be solved with the advice of friends, family, or a so-called child expert. Compound those standard parenting challenges with social, developmental, psychological, physical, financial, and emotional issues brought on by a child’s life-threatening illness, and it seems impossible to navigate.
Some people tell us, “I don’t know how you say ‘no’ to Becca. I would just give her everything she wants.” Oftentimes we want to indulge her every desire, because life is short and we don’t know how much time we will have with her, because of all the absolute crap she’s had to endure, or for other reasons. Fortunately, we get to live with the little “monster” we created over the last five years, though. As a result, we try to choose our battles, and we continually work on helping Becca deal with her frustration, fears, negative self-image, and food issues caused by her illness and treatment, while attempting to do all the normal things that parents do to help their children develop into responsible and capable young adults. It’s exhausting!
I received my own packet of teacher school pictures at the end of last week that were taken after school started this year. Well, there are LOTS of pictures in the packet, so I gave one to Becca and Lily, since they enjoy having photos of the people they love. After telling me I looked beautiful (LOVE that sweet girl!), Becca got so excited and said, “When I’m in the hospital, I’ll tape this on my bed.” She also often says, “The next time I have a port,” or, “When I have to stay in the hospital…” I tried to explain to her that she shouldn’t be inpatient in the hospital anymore, but she doesn’t believe me. This has been so much a part of her life for as long as she can remember, so why would she believe that life would be any different?! I still remember the first time around with ALL when Becca was taking lots of yucky medicines at home, and she was tired of it. She told me that she was done with them, and that she wanted to give them to our younger neighbor to whom we used to give hand-me-down clothes.
Though we are currently in a good place, the ramifications and lasting effects will be life-long. Chances are, Becca will experience some secondary conditions and side effects from treatment down the road. We don’t know what they will be or when they will appear, so we try to focus on the present. That worry is always there, though. I often wonder, “When am I going to get smacked upside the head with one of these things?”
Following the grieving of sorts that I have done this week, I have moved toward recognizing the positive outcomes of Becca’s illness that have evolved during the past five years. I truly do feel that there is a reason for everything, and though I’m still trying to figure out the why of it all, I see how so many good things have come out of our journey so far. Most of the positive aspects boil down to connections that have been made or cultivated.
The bond that Ethan and I have forged has only grown stronger. While life-changing events like this oftentimes drive couples apart, it has done the opposite for us. We have learned that we make a really good team, and in parenting, we have evolved to where we can tag-team to be more effective. I could not have done this alone, so I am so glad that Ethan has been such a rock, shoulder, and partner throughout this time.
Despite everything she’s been through, Lily is really a good kid. She is smart, creative, beautiful, well-adjusted, and has such a good sense of humor. She gets that from her father, you know. Even though she bickers with her sister constantly, Lily genuinely loves and cares for Becca, and she has such a good heart. I love who she is, and this five-year journey has shaped who she is.
Our family has also met with infinite kindness and support from family members, friends, co-workers, and even complete strangers. I have frequently wondered how families survive without support systems in the area where they live. We have been fortunate to have both of our families in town, and the love shown by my Loveland Schools “family” and the girls’ Kings community has been amazing.
The wonderful nonprofit organizations we have discovered since being diagnosed have opened our eyes to the good being done, too. The Make-A-Wish Foundation, Give Kids the World Village, CancerFree KIDS, and The Dragonfly Foundation are all near and dear to our hearts. Each of them in their own way has smoothed out some of the nastier bumps in the road and has provided some joy, comfort, and hope. CancerFree KIDS and The Dragonfly Foundation, in particular, have helped us to connect with other families experiencing similar challenges.
Ethan is now pursuing a PhD in the healthcare field. If Becca would not have gotten sick, I don’t feel this change in life paths would have occurred. The opportunity was there, the timing was perfect, and Ethan is enjoying being a student for the first time in his life. He will make a huge difference in the lives of his future patients and their families, with his acquired knowledge, sense of humor, and bedside manner.
I am astounded at all of the doctors, nurses, therapists, child life specialists, care coordinators, and other support staff at Cincinnati Children’s who we have met over the past five years. They are amazing people, and I cannot imagine NOT knowing them. Together with Matthew (our hero who selflessly donated his life-saving bone marrow), they have saved Becca’s life many times, and for that, we are eternally grateful.
I also now have appreciation for the little things taken for granted before – all of us in the house together, holidays, vacations, family game nights, health, family, and friends. I try to pause occasionally and soak in the brief moments that bring smiles to my face. For example, after Becca had woken up and come downstairs a few days ago, I told her I was heading upstairs for a few minutes. She replied, “C’mere, Mommy,” and proceeded to give me Eskimo and butterfly kisses, as well as “real” kisses, and she refused to let me go. As I’ve mentioned to many of you, Becca makes us laugh (and sometimes cry) each day. You never know what she will come out with next, and it’s usually very entertaining. Just as Becca’s illness has shaped Lily, it has also shaped Becca… and I absolutely love the little person that she has become!
I guess the biggest lesson we have learned from the last five years is that life is so very unpredictable. You don’t ever know what is going to happen the next day to throw off everything you have planned, so don’t hesitate to tell and show others that they are important to you. Spend time enjoying the little things rather than always focusing on what you “should” be doing.
So today I am celebrating the fact that it is five years later, and our beautiful Becca is a survivor! In fact, she is thriving and keeping all of us laughing and crying with her, while bringing us together in a multitude of ways. Who knows the impact of these connections in the future or what the next five years will hold? I’m looking forward to finding out…