Zoe = Life

Jason is out with a friend.  Zoe and I sit on the sofa, like we always do.  We’re snuggled watching a romance on Netflix and eating frozen pizza, my zest to cook has been gone since the 3rd month of the pandemic.  I’m sipping a rhubarb shrub and tonic mock tail, because I’ve decided I’m not drinking for the last year of my 40s.   So far, so good.  I mean my life isn’t stressful at all, this should be a piece of cake, lol.

The girl in the movie has diabetes and is giving herself insulin injections and wears a pump.

What does she have mommy?

I try to explain diabetes in Zoe terms.  She has low blood sugar levels and if she doesn’t get them up she can die.  The pump alarms when she needs medicine.  Oh, and that is the same sort of pump you use!

But I’m not sick anymore, right mommy? 

And I freeze, because there it is.  The sheer innocence and total acceptance than she is just who she is, she is just Zoe.  To her, she is not sick, she is a teenager living her best life.  Or at least that is how she sees it.   She says this as she sits there almost in tears because her arm hurts so bad and is so swollen from a new Remodulin SubQ site that she can’t stop squirming and holds her right arm at an awkward angle.  She says this as we talk about her PH friends who have passed on.  She says this as she readies to go to a camp for medically fragile kids. She says this as she puts her oxygen on every night before bed.  She says this as she pops handfuls of pills every morning and night like they are skittles.

She is Zoe.    She is an almost 14-year-old who collects American Girl books like I did stickers in 2nd grade.  At every thrift store, she scours the shelves and collects them but won’t read them now, she probably can’t read them because there are too many words and too much to follow.  She collects them to take to Knox College so she can read them there.  Because that is where I went to undergrad and she wants to be like mommy.  She says every time she finds one.

She is an almost 14-year-old with a diary that she copies quotes about love into.  She can’t even read some of the quotes because the words are too big, but they contain the word love and that is what matters to her. Her love is pure all-encompassing sort, no exceptions. 

She is an almost 14-year-old who blushes when she talks about her celebrity crush on Shawn Mendes and then talks about when she is older and how she will marry her friend, another PH girl who she has met a few times and chats with on line, because to her marriage is your bestie and a person that gets what you are going through and you love to play dolls with and be silly with and play Roblux with.   They’ll both have a kid she says, without realizing that this isn’t a possibility for her.

She is an almost 14-year-old who knows all the swear words and is obsessed with the song ABCDEFU by Gayle, and yet will never say them aloud in an any conversation because she knows they’re “inappropriate”.   

She is an almost 14-year-old who loves visiting the neighborhood cemetery to visit my childhood bestie and her own great grandparents.  An almost 14-year-old who wants to hear ALL the stories about me growing up and my grandparents and life as it was for her ancestors.  And she remembers them all.  And you will tell her the same story for the 15th time.

She is an almost 14-year-old who will hang over the side of a canyon at 7,000 feet altitude without blinking and swings so high that her feet are as high as the bar the swing hangs from and yet runs inside when she hears or sees fireworks or loud noises.

She is an almost 14-year-old who wants to be a doctor or nurse, or work at Target or be a veterinarian or work at Mod Pizza but struggles to multiply 7×7.

She is the almost 14-year-old who when she sees a couple getting romantic in a movie asks me point blank if Jason and I have sex.  Sometimes, I say.  I’ve never seen you do that, she says.  It’s a private thing, I say.  Hmm, she replies. 

She is an almost 14-year-old who when I took her to the library book sale picked out a graphic novel about a trans boy and the struggles he went through in middle school because we talk about all the things in this house and she is pure love and acceptance and loves stories of people bravely being themselves.

She is an almost 14-year-old girl who is literally not scared of a single animal and will happily pick up a snake, a mouse, a spider and gently place them outside.   Except, for carpenter ants, Jason has taught her to squish those suckers with no remorse.

She is an almost 14-year-old who when we went to Mesa Verde National Park and the Japanese Incarceration camp in Minidoka, Idaho, She took the time to read ALL the plaques about the history of what happened and asked a million questions, because she loves learning about all things historical, but if you ask her to go read for 5 minutes she’ll tell you she is tired and needs a nap.

She is a 14-year-old girl who wants to be so like me in ALL the ways and has been poked and prodded her whole life without batting an eye, but WILL NOT under any circumstances get her ears pierced.   She will however wear the biggest, dangliest clip on earrings, cause, you know, Mommy does.

She is an almost 14-year-old who when we went to plan her birthday party this year, we struggled to think who to invite. She has school peers who are kind and sweet with her and include her at school when asked, but she is complicated.  She is 14 going on maybe 10 socially. She is unaware of social cues and personal space and can’t physically or mentally keep up with her fellow students and it is a lot for kids to process and be around all the time.

She is an almost 14-year-old who is in her element with 5-year-old and 80 year olds.  And with Me, because I treat her like a little adult and we do all the things Mommy does.  

She is an almost 14-year-old who is obsessed with TikTok like they all are because music and dance are her jam.  It is there she feels confident and powerful and successful.  But only with those that she is close to, don’t even think about getting her to say hi to someone she doesn’t know.

She is Magic.  She is pure and unfettered and misunderstood and sometimes lonely.

For years I struggled with thinking that I’m not a great mom for her, I work too much, I’m gone too much, dislike playing, hate legos and slime, suck at having fun.

But then she and I did a road trip with my sister and niece and we hiked, and camped, and piggyback carried Zoe and her oxygen up and down mountain trails and through desert terrain and listened to terrible Kidz Bop music in the car because she asked us to, and played silly road games like count the dead roadkill and drew silly imaginary creatures and giggled and laughed and smiled for 16 days straight and I realized… actually, I’m doing this all right.   Doing it my way and in the way that is right for her.  For her needs, for her life, for her soul, her happiness and her connection.   

I (and I say I because I’m writing this, I do not mean to exclude Jason, who is absolutely an integral part of this) have given Zoe her perfect life.  She lives each day blissfully unaware of her ultimate prognosis, no matter how much we talk about this, she lives each day knowing she is loved by those around her, even if she spends the day mainly alone at school in her own world, not fitting into any mold and not having any peers quite like her. She feels safe in our home, snuggled with us or flying high on her swing.  We don’t hide anything from her, we don’t shy away from hard conversations, we have them all with her, we include her and her opinion in medical choices.  She still feels comfortable coming up to me and whispering Mommy can I talk to you?  She crawls in bed with us at night, because that is her world:  Me, Jason and Zoe.  It just is.   And it is enough.    We can try and explain all we want to her that this isn’t how the world operates, but why?  This is our world, this is enough, these magic few years we get with her.

SO much of my life has changed and turned upside down and isn’t what I thought it would be or ever saw coming, but none of it matters.  Zoe is, Zoe exists because of us and the family and friends that love her and she just is.  She makes everyone that knows her and interacts with her a better person.

I don’t know what life hold for her or me, but in this moment we are just here.  Doing our best for her, making her feel loved and safe and needed and wanted and never ever alone.  Every day of her precious limited life.   What else is there?  Life is too short to not live it our way.  Live it for her.   “Zoe’s rules “as she likes to say

Happy almost 14 my beautiful angel, I love being your mommy more than anything else in the world.    Who would have thought that when we picked your name, before I was even pregnant, before we knew you were you in all your complicated, heartbreaking, miraculous, silly, and scary moments, how prophetic your name would be.  How serendipitous, how much the universe has our backs. 

 You are Zoe.  Zoe means life.  You are life.  You are my life.