Last week I talked and thought a lot about milestones. And then in the middle of my Oh-I-am-having-so-many-difficult-milestones week, a terrible and sad milestone happened. My good friend J died. I am pretty sure that he was 28 years, 2 months and 18 days old. Too soon and too early. I’ve been finding myself lying awake early in the morning, thinking about J for the past few days. And this morning I found myself thinking about his mom.
My friend J has been ill for as long as I’ve known him. He had cystic fibrosis. He lived with cystic fibrosis day in and day out, fought it, explained it tirelessly and patiently to others, denied it when he wanted to do something fun, acknowledged and respected it when it was particularly virulent and as he said, “mopped it up” all the time. He was a smart philosophy student and I had the distinct privilege of working with him at the university and conducting a wonderful reading course, designed by J and I and another student.
During that time, we did a lot of talking. Sometimes out of the office and sometimes over wine or a flattish warmish beer at the Imperial pub. We evolved our collegiality into a friendship and stayed in touch, often simply by email and Facebook. Occasionally we hung out in his hospital room and he gave me chocolate bars that he didn’t want and we critiqued the nurses’ IV techniques. But all of it, well, it was never enough and I figured I would have him around for longer. I have an unanswered email in my Facebook messaging from a few weeks ago and I now chastise myself for not calling or following up or finding out just how ill he was, to not answer an email. I just figured he’d be back.
When we did connect, we talked. A lot. We talked about philosophy (well, he taught me a lot about philosophy to be honest), but about a lot of other things too – with no apparent common theme to someone else perhaps, but it was evident to us. J wanted to talk about the absolute value and experience of living: sex, love, parenting, fear, death, health, illness, bodies, sickness, messiness, loss, gratitude, loneliness.
J used to ask me a lot about being a mom to Georgia, about what it was like, what I felt like, how I thought about it. He talked to me a great deal about his own mom, about her help and patience and kindness. Being a mom to a kid with cystic fibrosis is likely one of the toughest things there is, I imagine. Not only does your child have a serious chronic illness, and requires daily therapy, medication and close monitoring, but that illness is also predictably life-limiting. You will watch your child struggle for breath, and struggle to do the things we all take so much for granted: breathing, eating, sustaining. You will take care of your child for all of his shortened life and you will, very likely, watch him suffer and watch him die.
I think now that J’s exploration of my own sense of being a mom was very likely helping him take care of his own mother. He was a person who took care of others, in a very unique, special and caring way. I had a sense that he was unthinkably sad knowing that his mother would lose him and he wanted to care for her in some way. When I explained to him my own feelings about having a child with special needs, his response always showed his genuine insight into that feeling few others really get. He used to say that he was grateful to those around him “who got it”, who could understand, as much as might be possible, about his illness and the experience of having CF, without being able to experience it: the sympathy, not empathy piece. And in turn, he “got it”. I never felt that I had to explain or justify my feelings about being a mom to Georgia to J, but he questioned and probed and asked, sometimes quite difficult questions. I see now that as much as he was asking me to explore my own feelings, he was also exploring them for himself and for his own family and his mom. He always said he wanted to talk about things, and push and find answers, as he didn’t have much time. And he had people to take care of.
In the midst of all my angst about Georgia’s milestones, I have to thank J for once again teaching me something. As difficult as things may be sometimes, I have the incredible luxury of time to figure her out.
Yes, I have a lovely child who will need my fairly intensive, day-to-day help for all of her life. Yes, I’ll worry about who will meet all her little idiosyncratic needs once I’m not around, but for now and many years to come, I have her with me. I have time. Time to figure out how to take care of her best. Time to ask questions and reflect. Time to deal with all the hard stuff and work through it. Time to hug her and hold her close. Time to see her sleep peacefully, to take care of her when she is ill and then time to watch her get better. Time.
Time to make lists of all the little things she likes.
Oh yeah, I started one.
She likes a Scooby Doo (or Angry Birds) bandaid on the back of her left hand every night since she once, years ago, had a bandaid put there after being hospitalized with an IV.
She can cut her breakfast fried egg, but you need to put the lateral cuts in place and have her do the cross cuts only.
She needs to be told exactly what time to get up before she goes to bed, or she’ll wake up in a panic at 4 am, wondering.
She’ll strongly object to carrots on the side of a sandwich, but if you just put them there and don’t say anything, she’ll eat them.
She wants to open the back gate on the way out to the car and you have to wash her back in the bath.
She likes a French braid on weekdays and a “pony-braid” on the weekends. Don’t cut her hair so short that a braid isn’t possible.
She needs to have her sunglasses on every day, and it’s not worth the fight.
She likes two cookies in her lunch.
And if you play Elton John, she’ll want the “think it’s gonna be a long long time” song over and over (Rocket Man).
At the end of the day, despite all the things I may agonize over or worry about, Georgia is very likely to enjoy a long and lovely life. I will have her and all her little quirks for much longer than J’s mother could ever hope to have had her lovely son with her. While I was so busy worrying about milestones, she is mourning her son, and I am so very sad for her. Georgia’s milestones make me emotional, yes, and I’m grateful that I can experience them.
You know, I think that if I had a kid with CF, I’d be so tempted to keep him all to myself for the likely limited time that I’d have him with me. It’s irrational, of course, and not possible. But I can see having that selfish desire, to hold him close, to not share him.
When I think about J’s mom, I think about how I am so very grateful to her for sharing him so generously with the world and for the brief time I was fortunate enough to learn from him and call him my friend.