Please Hear Me


This piece was originally published in “IG Living” magazine, December/January 2014 issue. Three of my four children live with Common Variable Immunodeficiency. If I thought life was weird when they were little and sick, these teenage years often feel like a near death experience.

Teenagers. Can’t live with ‘em, can’t duct tape them to a tree in the middle of a remote forest — where nobody can hear their pleas for a better phone or a later curfew or another $20 — because apparently it’s illegal or something. Whatever.

My 15-year-old daughter has blue hair. Actually, at the moment, it’s bleach blonde with blue streaks. In the past two years, her hair has been dark blue, hot pink, purple, and in the holiday spirit of Christmas, fire engine red. It drives my mother crazy. She can’t understand why I let her do it.

My daughter and I argue. A lot. There are some arguments I absolutely MUST win — such as whether or not she attends her monthly infusion appointments – and some I feel are just not worth the time and effort to fight about – like the temporary color of her hair.

Parenting teenagers is hard. Parenting teenagers with chronic illness is even more difficult. I worry about all the typical issues most parents do: drugs, alcohol, sex, teen pregnancy. But it’s more than that. When a teenager lives with a chronic illness, each of these worries expands exponentially, because there could always be added ramifications.

I worry that excessive alcohol consumption could wreak havoc on an already weakened immune system. I worry what damage smoking cigarettes or pot would cause to asthmatic lungs already injured by infections. I worry that a split-second decision to have sex just once, could leave my daughter with an STD that would ravage her body, or result in a pregnancy she couldn’t possibly be healthy enough to support.

But then again……

Then again, I realize that I need to let my kids grow up. I know that when I was a teenager, I did…..well, some stupid things. I want to protect my children from every single Boogeyman in the world.

I also know I can’t.

When my kids were first diagnosed — really, even before that, when they were sick all the time and we weren’t sure why — I had control. They were young and I was the Boss. If they seemed ill, I cancelled plans and kept them home. I had the power to make them take their meds, or hog-tie them into a car seat for a nebulizer treatment. (Yes, a car seat. My little one was quick to run and hard to catch).

I have four children. All of them have asthma, and the three youngest live with Common Variable Immunodeficiency. My girls are 17 and 15, and at 11 and 13, my boys are just at the cusp of teen angst. As they are all growing older, it’s hitting me that my Supermom Powers are becoming rather impotent. It can be difficult to convince a headstrong, rebellious teenager to take their meds, stay home when sick, or submit to infusions. It has nothing to do with not being a good kid, and everything to do with being a typical teenager. And I know that in just a couple of short years, I will have no decision-making power at all. None.

None. My mother-heart quivers at the notion.

This, I think, is the root of my worry. In just over 2 years, my daughter can make the choice herself if she wants a tattoo, and I will have no say in that decision. She can decide to gauge her ears or her nose or pierce her tongue and I will not be able to do a single thing, except stare at my ceiling at 2 a.m. and worry about the cleanliness of the tattoo and piercing shop and the potential for infection. And keep a bottle of peroxide at the ready.

I wonder if this imaginary tattoo artist would accept a letter of explanation from our Infectious Disease guy? The possibility is slightly comforting.

I’ve always tried to be open with my kids, to explain that while their illnesses should never be used as an excuse to limit their futures, they do need to think. Think through decisions that may have a little bit more impact on them, because of CVID and asthma and everything else.

Last week, we received a baby shower invitation from a high school classmate of my daughter’s. I blinked a bit. The mother-to-be is a girl who has spent many sleepovers at our home; a girl whose hair I used to braid; a girl who –just a blink of time ago – was a little girl, just like my own.

I felt this warranted another one of those little mother-daughter “talks,” and cleared a space at our old wooden kitchen table for that purpose. Rather helplessly moving around the clutter that overruns our table (my Susie Homemaker skills are decidedly deficient), I catch her attention.
“Let’s sit down. I want to discuss something with you, Savannah.”

Hands halt, fingers aquiver over her iPod.

“Mom….is this about the baby shower?”

“Kind of….well…,” (The speed of my speech is increasing at a ridiculous rate, and my words begin to tumble over one another) “I think we should talk about the consequences of teenage pregnancy, and even though we hope everything goes well for your friend and her future is bright and happy….we should talk about….um….”

Eyes roll. The expression on her face clearly implying, “My mom is so lame, it’s going to kill me.”

“Oh. My. God. MOM. Please don’t tell me this is another sex talk. Not again.”

“Well, honey, it’s just that you need to understand the difficulties something like this could cause for you, having the medical issues you have…….”

I drift off, I know where I want this conversation to go, I’m just not positive how to get there.

“MOM. We don’t need to talk about this again. I heard you the last time. And the time before that. I hear you, I hear you.”

I hope she does. I hope she does.

Please hear me.


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