How Did We Get Here?

June 12, 2017

This morning we arrived at the hospital to get Calum’s blood levels checked and learned he will need a blood and platelet transfusion, and his neutrophils are at an all-time low: zero. The effects of this cycle have finally kicked in after weeks of being graced with relatively decent news regarding his health. As hard as the last month and a half has been keeping Calum isolated, knowing how incredibly vulnerable he is right now is by far the most anxious I have felt. We will be praying Calum does not acquire any infections until his neutrophils are able to recover over the next couple weeks.

A lot of days I am in go-mode and don’t let myself get too bogged down with the bigger picture of what is happening with Calum. When I am thinking of our situation, usually it is in relation to the present moment, or his current treatment cycle and how he is feeling each day. Every now and then, however, I give my mind the freedom to travel a little further, even though I know it will be painful. I wonder how we got here. I wonder if his cancer could somehow have been prevented and I wonder, if that indeed is the nature of his illness, where in the world did it come from? And will Faye be susceptible then, too? I will never know the answer to these haunting questions.

I will also never know when exactly his cancer began to take over. I think back to when things changed in my heart regarding his health and, in December, knowing intuitively something was going on with his body. I don’t think we could have uncovered his cancer any sooner than we did, and I don’t worry about the timing of that in relation to the eventual outcome of his health, which is a gift, but I do get sad thinking about it. I do wonder how badly he was hurting and for how long. I think of those last few weeks leading up to his diagnosis and feel shattering sorrow that those were the last moments we had before our lives changed forever. I also feel immense remorse for being hard on him when he was sick during those weeks. Though I was worried, I didn’t want him to feel too coddled, especially if he was just having a cold and being unnecessarily needy.

So now, in hindsight, I am brokenhearted for making him go to school when he wanted to stay home, and I am brokenhearted for making him wake-up from his naps though he said he was still tired, and I am brokenhearted that I did not pick him up on those mornings he asked to be carried down the stairs because his legs hurt; I told him he was a big boy and could walk down the stairs himself. I am tormented knowing that his young legs truly hurt so much that he did not even want to walk down the stairs, yet pushed through the rest of the day without further complaint. I thought he was just jealous of his baby sister, who needed to be carried. I figured this all could have been part of the typical toddler manipulation but, now that I know it wasn’t, I am guilt-ridden sick by his honest and warranted desire for help. I will never be able to apologize to my son for this because he won’t understand, so the only thing I can do moving forward is listen more carefully, not only to my children, but to my own instincts.

I can forgive myself and I know he forgives me, too, because I know just how incredible he is. When my son was born, I used to pray constantly that, if everything could go smoothly for my first round of parenting, I’d be able handle anything else in life. I have always been so unbelievably frightened of something happening to him. From the time he was a newborn, every step with him ran like clockwork. Actually, it ran better than clockwork. He fed well, he smiled at six weeks, he rolled over and crawled ahead of schedule, he took his first steps at ten months, and he was talking in short, yet impressive sentences by the time he was about 18 months old. He was a great sleeper, and he ate a wide variety of colorful, organic foods. He never even got an ear infection. He had been a developmental dream, and I was exceedingly grateful for each of these phenomenal blessings. I never had any concrete reasons to worry.

When he was diagnosed with Leukemia, it felt like the good-luck ball had dropped. As cynical as it sounds, I lived a lot of my life waiting for something awful to happen because I thought I had been too lucky and too happy. I thought, in a game of odds, it was impossible to go on with such incredible good fortune. As time has gone on since his diagnosis, however, it occurs to me that my son has blown the doors off his previous version of exceptional, and I have uncovered the greatest blessings of my life.

Because of my son, even during the darkest of times, this journey has been bearable. He arrives at the hospital on treatment days with his arms full of dinosaurs, regaling the hospital staff with knock-knock jokes. I erupt with pride as we walk the hallways hand-in-hand. I forget he is sick because I am so focused on the beauty of this tiny celebrity that is mine. I can’t decide if he is able to be so valiant because he is too young to have a hold on the severity of his situation or if, quite the contrary, he has just handled the tribulations of this disease with a grace beyond his years. Undoubtedly, it is combination of the two, but, at times, his level of sophistication and moments of clarity have taken my breath away. One evening, a couple days ago, I was feeding the kids dinner. I know he must have been feeling horrible but we were having a nice conversation, eating pizza and listening to a few of his favorite tunes, which include Bruno Mars’ Versace on the Floor and the Ninja Turtles theme song. It was a simple and joyful moment in the midst of a sea of rough days. He looked me directly in the eyes, with his colorless complexion and bare head, and said in the most deeply, genuine tone, “Mom, I’m so happy.” As my eyes filled up with tears, I realized this child is the most amazing person I have ever known. In that moment, I knew he wanted me to know he was OK.

Calum in Sept 2016 and June 2017

The moments of intense elation since Calum’s diagnosis, from the small ones like described above, right up to the big ones, like when we learned Calum achieved remission, have taught me something. An event like we are going through can bring a lot of sadness and a lot of worry, but it cannot take away the happiness. It can’t take away the love either. In fact, since all this happened, the intense love I feel in my heart for the kids and Mike practically make my heart burst open every day. It’s such a fine line between pain and love though and, at certain junctions in this journey, I have been unable to decipher which feeling I was truly experiencing. Mike, Faye and especially Calum, however, are my constant reminder that the feeling is all about love. We are so lucky.

Please continue to keep Calum in your thoughts as we push through these last couple weeks.


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