“My son is NOT sickly!”

Of all the questions we have been able to answer about our son’s illness and death, there is one that has continued to plague me: how could I not have known something was wrong, that something deadly lurked in my son that would destroy him and shatter our lives? How could a mother miss the signs and signals that her own child had an aggressive blood cancer? Were we negligent somehow in missing the red flags? What were the symptoms that led to his eventual diagnosis, and could we have discovered his leukemia sooner; if so, would it have made a difference in the outcome? These are some questions I intend to process over a series of posts, beginning with the first installment, “My son is not sickly!”

Caemon was sick a lot in his last year, well before he was diagnosed with JMML. He began 2012 with a prolonged bout with pneumonia, and he was nearly hospitalized then. He went on to develop ear infections, bronchitis, hand-foot-mouth disease, and numerous colds and secondary infections over the next six months. He was sick on a road trip we took in June, and complained in early August of not feeling good. We took him to the doctor often; he had a nebulizer for his breathing difficulties (he was determined to have asthmatic tendencies), and he was on schedule for all his vaccines. He was seen for every well-child visit, and we, as his moms, always used these visits to inquire about certain aspects of his health, be it his diet, sleep habits, or anything else of concern. We noticed and asked about his loud snoring accompanied by some apnea (where the person stops breathing for a moment), but never once did anyone, including his pediatrician, ever contemplate that something was seriously wrong with Caemon.

His numerous illnesses were chalked up to typical toddler “immune building” viruses. His snoring and apnea were shrugged off by doctors. No one seemed concerned. Timaree and I began to get paranoid about taking Caemon anywhere where he  might pick up germs, and began avoiding events where kids might be sick and in contact with our son. It began to feel like he was sick all the time, and I secretly wondered how normal it all really was. Sure, one of the kids in our group of moms was always sick, but never the same kid over and over. Except for Caemon, and we frequently missed Mom’s Group and other play-dates because of it. There were whispers and comments about Caemon’s delicate health, nothing harmful, but there was something that bugged me about people saying “Gosh your son sure gets sick a lot!”

“He’s not sickly, if that’s what they’re implying,” I said to Timaree. “His doctor said it’s common for them to get sick a lot at this age, especially if they’re in day care or preschool.” Except that Caemon wasn’t in daycare or preschool. I was particularly defensive about this characterization, for the simple fact that I was powerless to do anything about it. We fed him well, avoided germy places, washed his hands, emphasized good sleep habits, and took him to the doctor when he was sick. I believe we were as proactive as we could be, but the fact that he was still getting sick, and sometimes really sick, was beyond anything we could control. We tried probiotics, vitamins, herbal teas, you name it. Nothing could prepare us for what lurked beneath. I mean, who would ever imagine? What could have tipped us or his pediatrician off?

6 thoughts on ““My son is NOT sickly!”

  1. In my experience, exploring questions such as this can be a valuable part of the grief process. For some questions there will be no answer, for others you’ll find an aswer, then follow your heart as you decide what to do with each answer.
    The following is an extract from something I wrote on the morning of my son’s funeral.
    Your death is a question
    No answer can I find
    Battling to reconstruct
    The shattered fragements of my mind.
    We all grieve differently, so if my sharing feels inappropriate to you, please let me know. I’ll not be offended.
    I’m simply saying ‘I hear, I care, I empathise, and I encourage you to keep writing’.
    Hugs from Australia.

    • Those were beautiful words spoken by someone who can truly relate to the situation. My heart feels heavy for both of you. Thank you for your beautiful sentiment.
      Please know that no matter which religion you believe in, there is a higher power looking out for all of you.

  2. One thing that has been a blessing to me while following you guys through this is how great you guys are as moms. I know a person can’t get a full and clear picture of another by reading blog posts but you both have shared in so much detail, even the painful details, that I think the picture I have of you as a family is pretty accurate.

    That picture is not like my own little family. I am an only parent who has been scared since her child was born. I have feared the “L-word” her whole life, and any other thing that comes after children–even car rides. I battle with myself to let my daughter live a full life, to let her experience the world, and not to pass on my anxieties. It is not like the family I had growing up either. In fact, I think your family is the opposite. It is everything beautiful in a family.

    I see you guys as people who have loved their child intensely. You paid attention to nutrition, encouraged individuality and curiosity, you nurtured and were present. You were there with him through his illness trying to find ways to ease his burden, to root him on.

    Sometimes I wish I didn’t follow your blog because I have been so heartbroken over the outcome. It made me mad at God and disappointed in science (two things I love). It is so hard to imagine this outcome. There was so much love and care going into Caemon and his spirit so strong, it is unfathomable that this could happen. I am glad you guys have each other to cling to and that you are working through your feelings. My uncle grieved himself to death after losing my cousin when we were kids. I think that is where I developed such an unhealthy fear about losing my child. You guys, your strength, your sharing is helpful to more people than you know. There are people out here who have learned from you. We have learned things about being a good parent, about healing, about living.

    I, for one, feel like you guys did everything right. With so many parents distant and distracted these days you have shown the world, through this blog, what healthy parenting is and Caemon has been such a beautiful soul to behold. My favorite thing about him has been his love for appliances. So unique! You guys allowed him to be that unique soul, you are great parents.

  3. I can’t imagine the amount of what-if’s you must be going through right now. There could not be anyone in the world that would doubt your attention to detail and concern when it comes to your child. Even if you never fully accept your own answers to these questions, never doubt that you and Timaree were the best mothers he could dream to have. There would be no blame to cast whatsoever, least of all from Caemon.
    ❤ Randy

  4. Thank you so much for sharing this process. You continue to be a teacher. And to create light with the love of and for your boy.

Thank you for your replies. We appreciate every comment.

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