What I wish I knew before my child was diagnosed with brain cancer??
I wish I had known how precious time was. I wish I had realized how little that mess had mattered, how quickly time passes by, how precious every sound from his lips could be.
Though his whole life we were on the go, enjoying life, but it wasn’t until my son was told that he mostly likely wouldn’t survive this that we really began to live. October 4, 2012 will forever be etched in my mind as a day that the world stopped turning at the same rate of speed. From that day, life became before and after.
Before Richard was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) we spent our weekends going to the park, visiting the local lake, swimming from sun up to sun down. I wish I had known how precious that time with him really was. I wish I had soaked up every minute. The thing is, as parents, we tend to busy ourselves. Even when taking our kids to a park, we use that time to socialize with other parents, or to send those all so important work emails. Looking up every so often to make sure we can spot our child, then right back to what we were up to. How many times did I take my kids to the park only to sit on a bench the entire time? How many of our trips to the pool or lake did I lay on the side line the entire time working on my tan rather than splashing around with them? Yea, I got up and played with them, when I got too hot to continue lying there, and needed a break from tanning my skin. There were many times that I did this with friends and spent more time laughing and cutting up with them, rather than playing with my kids. If I had known then that my son would die at 9 years old, I have to believe that I wouldn’t have cared one bit about my tan lines, or sending that work email. I have to believe that I would have gotten off my butt and played with my kids. I would have spent every single second soaking them in. I would have let the dishes lay in the sink and played with them before bedtime.
So often in our busy lives we wake up determined to keep ourselves on schedule. We get upset with our children when they take too long to put on their shoes. ‘UGH….get up, I’ve called your name three times… if I have to call your name one more time you’re going to be in trouble.’ I have to believe that had I known that our lives would change completely when my son was 7 years old, I would have spent every morning waking them up slowly with snuggles. Giggling while we played games to get dressed. I have to believe that I would have gotten up earlier to make sure we had time for things to go wrong, or us to fall behind schedule. To enjoy that morning rush with my kids rather than just march them into the day with one …two…. three, let’s go.
As adults we become so consumed with our careers. I wanted to travel every chance I was given with the company I worked for. I was working hard to hopefully become a District Manager some day. Had I known when I was busting my hiney to climb the corporate ladder that my life would change, I would have left work at work. How much money I earned wouldn’t even matter anymore! So often I brought it home with me. After working 12 hours, I’d come home and take calls or send emails, pushing my kids to the side so that they could entertain themselves. I have to believe that if had I know that my son wouldn’t ever turn 10 years old that I would have worked fewer hours, and I would have let work handle itself when I was home with my family.
I ask myself often, why did that matter so much to me? Did they miss me when I left? You see for me, it wasn’t my business I was working to grow. I was working in a corporate job that I loved, but while I want to believe I was a valued employee, I was just a number and quickly replaced. Life moves on, and they needed the job done. Meanwhile, what was waiting on me at home was a position that was irreplaceable. I was the CEO of the most important job in the world. However, I didn’t place that job description high enough in my list of importance. Don’t get me wrong, I needed to earn a living. I needed to pay for the fun I took my kids to enjoy, but I, like so many other parents, put the value of the corporate ladder before the quality of time my family got from me.
Before my son was diagnosed with brain cancer I wish I had realized how little the opinions of others really meant. I’ve always worked hard to be a likeable person and be easy to get along with. When relationships failed, as they often will, it would break my heart. I would spend so much of my energy worrying over what went wrong and how I could have changed the outcome of that relationship. If a “friend” had the wrong idea about who I was or what my agenda was, I spent way too much time trying to get them to see things from my perspective. I wish I had known none of that would matter. You see during my son’s fight for his life, we made his journey public. I wanted people to see what life was like with living with a child with cancer. By doing this I made myself and family vulnerable to the opinions of others. It didn’t take long for people to question my agenda and say hurtful things. I wish I had known then how little those people’s opinions mattered when it was all said and done. People will tell you what you should do, or how you should do it. They may question your every move. What I am glad that I know now, that their opinion of me is none of my business. All that matters is that everything I did/do is for my children.
My son died one week and three days shy of his 23rd month anniversary from being diagnosed with DIPG. He beat the odds and survived much longer than initially expected. From the moment he was diagnosed until the day he died, every ounce of me was poured into him and my other children. I will forever be a person who doesn’t care if there is a mess laying around in my floor, as long as I am taking that time and focusing on what is important….my family. I am thankful Richard’s fight taught me these things. I wish I hadn’t had to experience childhood cancer to learn that lesson. Please, hug your children. Please evaluate your life, and think, if your world was flipped upside down today, what would you forget about in order to be what your family needed? Every minute counts in life, and I promise you, if you’re aligned as you should be, when it’s all said and done all that matters is your family.