Caregiving for a Child and Finding Strength in Your Child, Family and Yourself
It was the day after Christmas last year and just two months after my son’s third birthday that he was diagnosed with Leukemia. Every parent’s biggest fear is to hear their child has a disease, with cancer likely topping the charts. I remember those first nights in the hospital, my husband and I smiling and pretending that things were fine for our son by day, hugging each other on our hospital cot sobbing by night. It is a time that is incredibly painful and still surreal to look back on. I recall vividly when a team of doctors entered our hospital room to deliver us his official diagnosis. We had been doing a copious amount of reading around what his condition might be while awaiting the final results of his bone marrow aspirate. When the doctor divulged that they had confirmed the presence of Acute Lymphoblastic Leukemia (ALL), I shouted out an enthusiastic, “YES!” garnering confused and, perhaps, partially concerned looks from the doctors. You see, I had read what great outcomes pediatric patients with ALL are getting these days and, if my son had to have cancer, I wanted to start his treatment on the most positive foot possible, knowing it was something he would beat. All I had in mind was: give me my task list, tell me how you’re going to cure him, and tell me exactly what I should do to help him get better. In no way would I want to romanticize what happened, and I have had plenty of my own very dark days, but now, more than ever, I realize how crucial it is to stay positive in tough times.
Our son is in remission and, after having endured eight months of very intense chemotherapy, he is now on a lighter treatment protocol for the next couple of years to ensure that the cancer stays out of his body. It is a long road and a tough haul, but he is doing so well and though he’s not able to attend school this year because of germ exposure, he’s happy and as energetic as ever at home. Life continues to be a challenge, but we are beyond grateful for his wonderful prognosis and response to treatment. In the rare event you find yourself in the role of a caregiver to a child with cancer, here are a few things to remember:
You can do anything for a single minute.
A lot of people have said to me “take it a day at a time”, but there have been some days that I’ve literally needed to take things one minute at a time because getting through a whole day seemed too overwhelming. Take a breath and know that you are strong enough to handle anything for one minute.
Do not go down the rabbit hole.
Your mind wants to wander to dark places thinking of your sick child and, more often than not, there are no answers to our haunting questions. DO NOT let these thoughts creep in. Remember, you have control of your thoughts and if you feel negativity creeping in, squash it. Think positively, stay in the moment, and, if possible, try to enjoy that moment by doing something silly to make your kid(s) laugh.
Treat your child as normal as possible.
Listen to their needs, but resist the urge to constantly ask if they are OK and to help them too much. Little kids are at an especially crucial age for problem solving, coping mechanisms, and finding some independence of their own. They will feel better and more empowered if they aren’t always treated like they’re sick.
I found when I was feeling sad about my son’s cancer, it would often be while sitting down, staring into space. If you’re doing this, stand up and move around. If possible, go outside and run or walk and even scream if you want. Accept the help of a family member or friend (accept help always!!) and go alone so you can cry if you need to.
Make time for your relationship.
Your family being held tightly together during this time is by far the most important thing so, once again, tap in on those family and friends to come over to watch your kids, even if it is just a couple hours, to get out of the house with your significant other or spouse. You’re also the only two people who know how the other is truly feeling, so it helps to talk to them and, just as importantly, listen to them unload, too. Everyone is going through it differently.
Try to get out
There is a lot of time you will be limited as to what you can do with your sick child, but it if you don’t get out, you will go crazy. Call local museums, nature centers or attractions and find out the time of day they are least crowded (lots of these places will allow early visits before opening to accommodate immunocompromised people). Bring a bunch of balls to an open field to kick around. Forget nutrition for a day and treat your kid to a drive through meal. Enroll in an art class or even an individual sports class like tennis.
There is still so much my husband and I are learning as we go through this process, and it will inevitably shift over time, but mostly I try to stay focused on personal strength so I have the energy to get through this all. Being a caretaker of a child with cancer has pushed me to be stronger than I ever wanted to be or needed to be before and has also shown me the incredible beauty of what a family unit is capable of in times of stress or sadness. Lean on each other and draw strength and energy from the smallest pleasures like having a glass of wine while watching your kids destroy the inside of your house. Most importantly, don’t forget to keep looking forward to and to keep smiling.