When my sons were first diagnosed with a life-threatening condition my first thoughts were of all the things in life they would be robbed of. I was hit with a terrible period of mourning. I was mourning the loss of the future that any parent would assume was the correct order. The order is supposed to be: have children, raise them, watch them grow into adulthood and then send them off into the world. But suddenly that world was crashing before my eyes. I became suddenly aware that they might not drive a car, get a chance to dance at prom, enjoy the fun and independence of college, fall in love or have the chance to experience the joy of having their own children one day. I walked through a blur of mourning for months. Tears were at the ready, with the most unsuspecting triggers. It could be a kid walking their dog home from school or a commercial of a woman spoiling her grandchildren. All things that I had once assumed were suddenly in question.
About three months into this blur of mourning, I had finally reached a turning point. I remember the moment vividly. I was at home alone with the boys. They were playing in their little kitchen that we kept in the living room. They were cooking and serving me little plastic and felt food concoctions. Completely out of nowhere I got hit by another trigger. I can’t remember what the thought was or what triggered it, but I remember trying to walk around the corner behind the wall so that the boys wouldn’t see my tears. Once again I was overcome with an incredible sadness over what their future would be. But then something dawned on me. I realized that some parents would do anything to be in my shoes. Some parents didn’t even get a chance to see their child’s first steps, and here I was, a crying mess with two completely happy boys who are just trying to play with me. I am so very lucky to have this time with my boys. I was sitting there in a clouded blur mourning two beautiful boys that were right in front of me. I was wasting precious time with them licking my wounds. I felt like such a fool thinking about the amount of time I had spent crying when I could have been cherishing our limited time together. It was time to dig myself out of this hole and enjoy this time with them, however long or short.
I also came to the realization that my pity was not benefiting anyone. Literally, it has zero use for me, my boys, or anyone. It’s doing the opposite. All this time that I had spent crying or worrying could have been time used positively. I could use all of this energy that I had been using for tears and instead use it to help my boys and other families like us. And that is exactly what I began to do. I dried my tears and began thinking of ways I could help. I began pouring all of my energy into helping other families, advocating for special needs, raising money for a cure through a nonprofit and learning how to be the best caregiver for my children. I realized that I’m not only fighting for the boys; I’m also modeling resilience for them. How could I ask them to find resilience in themselves when facing their future if I cannot model it for them?
Then, after a few years of turning awful news into purpose, I came to another powerful realization. All that time I kept pitying our situation when one day I realized that it was really a gift. It's the gift that no one wants. You may ask, how in the world could such devastating circumstances be a gift? I’ll tell you.
First, none of us know how many breaths we have on this earth. Most people carry on with their lives without a thought to how many breaths their loved ones have. I, on the other hand, know that my sons will likely have less time, and I have chosen to use that to my advantage. I take the time to savor the time that I have with them and make the most of it. While many parents are scrambling each summer to send their kids to multiple summer camps because the thought of entertaining them for hours a day with no break sounds exhausting, I instead keep my kids home all summer. It's a gift for both of us. Some of our best memories come from summer break. It forces us to spend time together and get creative. Am I exhausted some days? Absolutely! But I also know that one day they will become teenagers and I will no longer be the center of their world. It is a gift to spend this quality time together. When their last breath is here, I won’t look back at a missed opportunity, I will look back on some of the fondest memories we have together. That is more valuable to me than anything else on this earth and that is the gift.
The second gift is that I have learned the power of resilience. No matter what challenges lie ahead of me, none will be as impactful as the gut punch of a life-threatening condition. Luck is clearly not on my side and I’ve come to accept it. There is one guarantee in life: that life is not easy. You can be certain that you will face all sorts of obstacles and challenges; none of us are exempt from this. It's easier to get comfortable with disappointment when it keeps coming for you. In just two years’ time I found out about my children, my 13 year marriage blew up, and BOTH of my sisters developed cancer. I could have fallen into a deep depression, or I could accept that this is life, cruel and unfair as it is. The magic is that once you learn that life is actually set up to be a series of upsets, you start to see the beauty in it, when things do go right. Think of it like gambling. Life is the casino and the house always wins. But when you get a win, nothing feels better. So to me, each day that doesn’t come with mostly bad news is a win. If your life is boring and mundane, consider that being “up” at the casino.
It took some time and a lot of healing, but I finally feel strong. I no longer suddenly burst into tears from a triggering moment. My mind doesn't go straight to dread or sadness. I still get moments when I don’t know if something is possible for my boys. But it doesn’t crush me anymore because I have hope and because none of us truly know what life has planned for us or any of our loved ones. There will be ups and downs. And I plan on helping them cherish the sweeter moments. It no longer matters to me whether the boys will reach certain milestones because I know that their lives will be fulfilling. And that’s really what any of us can wish for.
