I started writing not long after coming home from our stay at SickKids with E. It felt therapeutic to be able put words down and to write about how the experience was making me feel. For the most part, the focus of my writing is about E, and myself. My wife, and eldest son, J are both referenced, but so far, they seem to be minor characters. E's condition doesn't just affect me, it affects the whole family. I thought I would take a moment to write about J, and reflect upon my thoughts and fears about how his 3.5 year old brain is processing his brother's leukemia diagnosis.
J knows that E is sick. We haven't come out and used the words "cancer", or "leukemia" to him, but we've explained to him that his brother is sick and we need to go to the hospital so that E can get special medicine so that he can get better. It is mentally and physically exhausting to care for E. I try to keep spirits up, and will act silly, or look like a fool just to make my kids laugh or smile. After a while, the insomnia, stress, worry, nighttime wake ups with E, hospital trips, etc. just drag you down. I find that on my bad days, I don't have as much patience for J and E that I would have before this ordeal. I just want for the both of them to have as normal and as happy childhoods as they possibly can. I worry that they'll grow up and harbour some sort of resentment or animosity toward me. I'm trying to find the strength. I'm trying to keep life normal for them. I'm trying to keep smiles on their little faces and laughter coming out of their little mouths. I'm trying, but this is unfamiliar territory and I don't know if I'm doing a good job. Ultimately, my biggest fear is that I'll fail them.
I really feel for J during this ordeal. He's at an age where he probably understands more than what we think he does, but he's also at an age where he doesn't have the vocabulary to effectively communicate his thoughts, fears, and stresses. During our initial 9 day stay at SickKids, J was cared for alternately by both sets of grandparents. He missed a whole week of daycare. During the induction phase, we had two weekly trips to SickKids. A couple of times, we needed to get my mother-in-law to pick him up from daycare because we wouldn't be back in time. During this month's consolidation phase, we had three weeks in a row where E was required to have a lumbar puncture, which required us to be at SickKids for 8:30 AM. 8:30 in the morning doesn't seem too bad, but it is very tricky when 1) you have a 3.5 year old to drop off at daycare and the earliest you can drop him off is at 6:30 AM, and 2) your route takes you on highway 401 and the Don Valley Parkway, both notorious traffic hellholes. Something had to give, so we asked family for help. My mother, my mother-in-law, and my visiting-from-BC sister were able to help us out by sleeping over to care for J in the morning, and to get him to daycare. You can only imagine how heartbreaking it was to return from the first scheduled lumbar puncture and hear J say "mommy, you left me" in reference to our early morning exit before he was awake. He seemed to be regressing in some of his behaviours, and he was also trying to sleep in our bed most nights, something he hadn't done in several months. We guessed that he wanted to sleep in our bed so that he would notice us wake up and go with us.
J is a great kid, but he does have some behavioural issues. Similar to myself, he seems to have issues with anxiety and stress. Daycare can be difficult for him, particularly when we drop him off, and during playtime. He seems to have issues when other kids invade what he considers his personal space, and he becomes overly possessive of toys. In both instances he'll physically lash out at the other kids, or scream, or both. At the time of E's diagnosis, we initially thought we may want or have to pull J out of daycare in order to minimize germ exposure to his immunocompromized brother. Staff at SickKids encouraged us to keep J's life and routines as normal as possible, and to keep him in daycare if he was already enrolled. He's been at his daycare for a little more than 2 years, and we love the facility and staff. It may be difficult for him at times, but overall, we feel that attendance and socialization with other children are beneficial to him. There's been a number of recent changes for him at daycare, which I worry is exacerbating some of his behaviours. J is a boy of routine, and he doesn't like it when life deviates from his normal. He has a new teacher in his class, and a number of friends recently graduated and started attending junior kindergarten. On top of that, a new crop of kids has arrived, and I think he feels a little out of sorts due to things being fluid rather than solid. One good thing for him has been his best friend, a little girl, whom I not going to give an initial of her name to respect her and her family's privacy. They have been friends since the beginning, back when he started in the toddler room as 18 month old. They play together every day, and he is very protective of her. Sadly, just yesterday we found out that she will be leaving J's daycare at the end of September. He doesn't know that she is leaving yet, and it breaks my heart to think of him being there without his best friend. I worry if he will understand what it means. Will he think that she's sick or on vacation? Will he start looking or asking for her when she's been gone for a couple of weeks? Will he be sad and upset when he realizes that she's not coming back? Or will the memory of her just fade away until it's as if they had never met? I just want him to be happy, but I also want to protect him from unnecessary hardship. I realize that you cannot control everything in life, and you can't shield your children from each and every encounter they may have with discomfort and adversity in their lives. With our family's recent struggles with E's leukemia, and all of the changes and upheavals in J's routine, his best friend leaving daycare was a life lesson that I had hoped could have been left for another time.
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