Updated: May 16, 2020
I can't even count how many times I have heard "You are so strong!". People want to send us encouragement and show their sympathy by saying those words "You are so strong" when they find out that our child has cancer.
At the very beginning of my child's cancer journey, when I heard these words, I hated it. Every time I heard it or read it in a message from someone, I cringed. I thought: Do they not see me? Do they not know I am NOT strong? That this is breaking me? That this is too much for my heart to bear?
Hearing "You are so strong" left me feeling so unseen and so misunderstood. That I had everyone fooled and I was really, REALLY good at hiding my true emotions and my looming thoughts. But even if I were asked how I was doing, I probably wouldn't have been upfront with how I was feeling because not too many people can handle the intensity of the emotions and thoughts that cancer parents go through.
Every time I heard "You are so strong", I wanted to scream! I wanted to yell "I AM NOT STRONG!! STOP telling me that!" I knew the words were well intentioned, but it created a level of pressure on me that maybe I should be stronger. That I wasn't being strong enough. And worse off, that I didn't even know how to be strong, and wondered if I would ever have the strength to endure this agony.
You may be feeling this way as a new pediatric cancer parent, or even at some point after the initial diagnosis has been assimilated into your lifestyle.
Fast Forward to 5 months:
"You are so strong!"........and my response today?
Damn Right I am strong!! I am so freakin' strong, you have NOOOOO idea!!
I have endured more than I share on social media. I have learned to stand up on my two feet every morning, and take one day at a time, and tackle each day as it comes. I face fear EVERY. SINGLE. DAY. and tell it to back off.
I have learned to take some really HUGE emotions and express them when it's too much to hold on to, and to not let them control me everyday. To allow myself to hurt, to be afraid, to be mad, to be uncertain and to grieve losses that are unimaginable to others who don't understand the life we now live due to pediatric cancer.
I have seen too many families suffer from the loss of their child who fought an unfair battle against cancer. And their pain is all too real and close to my heart because my child is in his battle too. And I weep for their loss and learn to control the fear that loss could happen to our family too. I learn to live in the "where we actually are today" in terms of prognosis, and not live in the future for the fear of the unknown is great. And I can't dwell in the unknown of the future. Any of my energy spent there takes away energy from where it needs to be: surviving the present and being strong enough for what I am currently facing.
I have learned to speak up more to advocate for my child. That you HAVE to be an active member in the process to ensure things aren't missed or done incorrectly, because unfortunately not all medical professional are created equal and mistakes do happen. In our case, a nurse did not add Heparin to our child's port after it was accessed in the ER, and the nurse who caught it taught us that we need to check their work.
That when you communicate with your medical staff, you can push for things that they never discussed with you and you have researched. That you can have open discussions about the pros and cons of making changes to the treatment plan or symptom management based on your own research. That you learn the different medications available and what medication needs to be benched for good from your child's list and which ones are important for the safety of your child.
I have learned that doctors know a lot, but they don't my child like I know him. And if I insist that something isn't right, that "This is a common side effect" is not a good enough response, and I will keep pushing until you make adjustments to make things better! And this is an uphill battle that requires mental endurance as you try to problem solve and collaborate with your child's medical team.
I have learned that when I feel most powerless, that I have the ability to empower myself to dry my tears, set aside my fears, give a smile to my children and keep moving forward through the next obstacle. And once one obstacle is over, another one pops up that I must battle through. And sometimes those obstacles are my own demons trying to send me down a dark hole, and sometimes it's dealing with the struggles my child is physically or emotionally going through. But I have learned that I have built more mental strength and stamina than I ever had to experience.
I have learned that life and it's drama don't pause because I already have enough to deal with, but I am stronger than ever and I don't sweat the small stuff and set limits to keep the focus on what matters most: my child. I have learned to experience and live with joy and suffering intertwined. I have learned to accept that this will be my reality for the rest of my days, even long after cancer is done, because relapse and secondary cancers are possibilities.
But I AM strong.
I am strong. Stronger than I ever thought I would be.
And definitely stronger than I was from the beginning of the journey as a parent to a child newly diagnosed with pediatric cancer.
And if you see me crying, it is not a sign of my weakness. It is a sign of my motherhood. It is a sign of the love so deep and so strong for my child that has created a super mom. It is a sign of strength made visible, as I let go of the worries that are too much to bear, through every tear that streams down my face.
And I will continue to fight to stay strong and acknowledge that when I hear "You are strong", that those words don't do justice to the strength that a cancer parent truly possesses.
This is a long journey, one that requires more stamina than a marathon runner. One that you didn't sign up for. But slowly, you will build strength to face the obstacles. You will acclimate to living one moment at a time, one day at a time. You will begrudgingly accept that the future is truly unknown so you can't worry about your strength for then, but you can build it just for today. And if you feel at a loss, the pediatric cancer community and your village is always there, willing to help you carry your cross when it gets too heavy.
Isaiah 40:29 He gives power to the weak and strength to the powerless.