Had you asked me a week ago if we were successful at doing that I would have probably told you that, yes, in fact, she was adjusting brilliantly and life continues on, smoothly if not differently. I would have told about our  new normal and all the things that entails. I would have said all is as well as it can be and that we were holding up quite nicely thank-you-very-much.

This week I discovered that it isn’t as peaches and cream as I ‘d wanted to believe.

Upon arriving at Camp Kudzu, (www.campkudzu.com) camp  for children with diabetes, we participated in all the usual rituals of leaving one’s child at camp. Lugging the trunk, the pillow, the sleeping bag, the stuffed animals, and everything else out of the car and down and around and over the river and through the woods. We stood in all the right lines and answered all the right questions, and marveled that unlike her “old ” camp, this one had AIR CONDITIONING.   Just after completing the mandatory lice check and before the head shot (of said child with now messed hair) my daughter looked at me and said “Mommy, all these kids look like normal kids.” To which I replied, “they are normal honey, just like you.” She gave me a look that pierced my heart into a million pieces and then said “You know what I mean mommy.” And suddenly I did.

I looked around and thought to myself , hey, all these parents, they look like normal parents.  That’s when I realized just how incredibly lonely this journey has been for me, and most certainly for my daughter. She’s not “normal”, no matter what we say. She has a chronic, life-threatening illness that, barring a cure, will be a part of her life forever. She is the only one at school, and in fact, the only one in her world, that has diabetes. She is the only one that wears a medic alert necklace all the time, even when it bothers her on the playground. She is the only one that has to prick herself before lunch, count the carbs that go in her mouth, have her mother come to school to  give her meds, and the only that doesn’t go to sleep-overs with her friends . She is the only one that doesn’t eat the donuts on birthday day and the only one that has to run to catch up because testing her blood glucose slowed her down on the way to recess. She is not normal in her world, she is all alone, the odd man out, regardless of everything that we do.

And so am I. I have the most amazing friends and family, people who listen and care and would do anything I asked of them. They try to understand and they listen, but they don’t know. I know no one that walks around with this in their head twenty-four seven. All parents worry, all parents fear for their children and protect them with all their might. But do all parents feel completely helpless all the time knowing that even giving it their very best  it isn’t enough to keep their child alive. Myvery best won’t do. I am at the mercy of the insulin pen.

I have gone about my days being the best version of me I know how, but until I stood in that camp cafeteria I never realized that this bothers me way down deep in my core-this solo ride. No colleague, no friend, no lover really knows.

 But everyone in that room knew. And even if only for a moment, that felt amazing.

If they can do it, I can do it. If  I  can do it, they can do it. We may not be normal in our world, but we are normal in theirs and they in ours.

My little one came home and said the best part of camp was that  nobody complained if she needed to stop to test because she felt low. No one noticed she need a pull-up on a night when she was high. No one asked “why do you do that?” when she tested her blood.

 ”Mommy, ” she said, “it was totally awesome not being the only one.”

What more could I ask for than that?  At least for one short week in her life and mine.

Normal.

I am a social worker. I rarely write about my work because I compartmentalize very well. It is what I am and who I am in so many ways, but it is also just “the job” and it’s a job best digested and then set aside, not rehashed  for public consumption.

At this point I have spent more years than I can believe helping others. Or, as I teach my students, helping others to help themselves. It seems I’ve done it all, and yet I know that I am a beginner, a novice, light years from the talents and skills of those I am privileged to know and work alongside. I have listened and heard everything you could ever wish you hadn’t.  I’ve listened to adults, couples, families. Men and women, boys and girls. I’ve sat on the couch and held the hands of adults as they struggled to find the words to articulate their pain, and I’ve  sat in the sandbox with little ones too young to speak of horrors inflicted upon them.

It has been my privilege to be with people at the best moments of life, and at the worst.  I have tried. I’ve talked people off the ledge and then called it a day. It is what I do. It is what I love.

Then today, while sitting in the carpool line waiting for my little one, I hit a link, to a website, something I do countless times throughout the day. I clicked, and there it was. A story about a mom, and a son, and how she’d lost him to Type One.  I read a few lines and I stopped.

I couldn’t breathe. Truly couldn’t breathe.

Everything I know, everything I ‘ve ever said to all the people in my life left me. Panic? Anxiety? Terror? That’s what I help other people deal with. It’s not supposed to be mine.

I sat there in the carpool line. Seven cars back. Six minutes ’til pick up. And I cried. And cried and tried to find my breath and tried to figure out how to talk myself back

from the ledge.

And then I got a message, from a stranger who’s not one at all. A wonderful kind voice that said “are you okay?” She told me to breathe. She told me that I would be fine, that my little one would be fine.

Later I replied and told her that yes I was okay, that I had to be . I had to chauffeur to this activity and that. I had to be mommy. I had to go about life one step at a time.

I’ve always been very good at my work.  I take a great deal of pride in what I do and especially how I do it. I realized today though, just how truly clueless I have been.

I sat on the sofas and in the hospital rooms and in the homes and listened, and said some ridiculously stupid words about something of which I knew nothing. What an absolute fool I have been.

But now I know.

Now I know what it feels like to stare over the ledge.

I know what if feels like to not be able to breathe.

My baby will not be that baby.

And I will tell myself that everyday for the rest of my life.

Shortly after Tony the Tiger finishes telling us “it’s grrrrrrrrrrrrrrrrrrrrrrrreat” an announcer’s voice reminds us that “Frosted Flakes are part of a balanced breakfast.”  I’ve always found that amusing, part of breakfast? Not at my house. The bowl of cereal, the poptart, the nutrigrain bar is breakfast in its entirety. I grew up that way, and alas many mornings so have my children.

Until now.

One of the things about having a child with type one diabetes is that food management becomes very important. The better she maintains a healthy diet, the better her overall health. We are three weeks post-diagnosis and I am becoming a pro at carb counting, so is little one. Our challenge on most days is getting enough carbohydrates in her diet. Breakfast is especially challenging.  One bowl of cereal-not enough carbs and not a balanced breakfast meal (balanced is for the record-two breads, one fat, two fruits and a milk) . So, Tony was right. Part of a balanced breakfast-now I get it!

The first days and weeks have been consumed with the details. Learning about food, learning about medication, educating the school, and bringing myself up to speed. It has been busy-mentally, physically, and emotionally. There has not been a lot of time for contemplation, but that’s the norm for parenting anyway isn’t it? We live each day carpooling, homeworking, feeding, bathing, clothing. We tuck them in and wake them up and occasionally get to stop and say wow, it’s halloween already, where do the days go?   It’s only when things go really well, or fall apart, that we  stop and think about life with our children and what it really means to have little ones walking around in the world carrying our heart with them.

Today we had our first post-diagnosis doctor’s appointment. The doc came in and she talked. She talked and talked and talked and talked and talked. There were charts and graphs and numbers and information, and it all boiled down to one thing: My little one has type one diabetes.  As she talked and talked and talked all I could think was Oh please please please shut up. Just. Shut. Up. Because with every word she spoke I suddenly heard my brain announcing See, see this is real. I didn’t want to hear her talk about sugar levels, I wanted her to say Oh, good news, we made a mistake. Your little girl is fine, so go home now. I wanted my own little miracle.

I didn’t get it. What I got was good news-she’s doing fine. As well as can be expected at week three. She’s a healthy, smart, funny, happy little girl.  So I took that news to the parking lot , and after sending little one on her way with her dad, I sat there and cried. I cried and cried and cried as much as the doc had talked and talked and talked.  Then I stopped and drove home.

I guess that ’s the way it is going to be from now on so I’d better learn to listen.
I need to hear the good news-she’s doing fine

and I need to understand that that in itself is my own little miracle.

Every day any of us have with our children is just that-a miracle. A gift.

Not to be squandered.

That makes it all grrrrrrrrrrrrrrrrrrrrrrrrrrrrreat.

Upon learning that we were to become parents again, ex and I reacted with the cool, calm aplomb that comes from having survived five years with child number one. Or rather, having had child number one survive with us. Our most common refrain was something along the lines of “well we didn’t kill the first one, so we should be just fine.”
In hindsight I think we had it backwards. Of course the first one made it to five relatively unscathed . She was the first, and with first children parents tend to be hyper-vigilante against all possible calamaties. We read the books and followed all the directions.

 
-Outlet plugs 
-Baby sleeping on her back
-Nothing smaller than a basketball in her hands prevented choking 
-Never ever left alone in the room with window blind cords. 
The first one never had a chance because we never let our guard down. 

 
So with an arrogance possessed only by the truly stupid, we pressed on with child two. 
She nearly choked on Barbie shoes. (Child one never had a Barbie until it was age appropriate so there were no shoes lying about the house)
She climbed over the sofa onto the the counter, grabbed a knife and a tylenol bottle and proceeded to attempt to saw the top off. 
She wandered around after her sister getting into everything. Climbing stairs, falling down stairs, eating dirt, swinging high into the air (not securely fastened in baby swing seat),  pulled the few remaining outlet guards from the wall and juggled them. 

It is a miracle child number two made it to eight intact. But she did. 
Magically we arrived at an age when most parents allow themselves to exhale. They are  8 and 13 and we are now comfortable with the knowledge that neither will likely choke on candy or the string of her jacket. They won’t run out into the street without looking, touch a hot stove, drink the cleaning solution. Yes, they are safe. 

Granted, like all parents I harbor the big bad fears-kidnapping, car accidents, freakish acts-of-god. I kiss them on the forehead and whisper a prayer as they head out to school and  worry, but it is a worry that is buried deeper below the surface, the constant worry that comes from having my heart walking around outside my body. 

But all in all,we made it! 
And then, this. 

 
Chronic illness.

Wait a minute, this wasn’t supposed to happen. I never imagined it, never allowed it to cross my mind (lest tempt the fates), never prepared myself. 
Now my little one, who can finally buckle herself into the seat, ride without training wheels, dial 911, is sick. Seriously sick and will live with this for the rest of her life. 

I know, we are lucky. It could be much much worse.  She can be medicated. She can do everything right and have wonderful odds of living a very long life. We aren’t battling cancer or any number of things, we’re battling Type One Diabetes.

 It could be much much worse. And yet, how could it get any worse?

 The side effects, the risk factors, the odds.

For the rest of her life, this will be a part of who she is.
For the rest of my life, this will be a part of me.

I will never again truly exhale and think

We made it.

I tried out for the cheerleading squad in the seventh grade. Me, the girl who can’t walk and chew gum at the same time tried to jump and twirl and clap and chant, in sync with other girls, in sync with myself. Needless to say I didn’t make the team. It was no great disappointment, just a rite of passage-doesn’t everyone try out for cheerleading at least once?

So I never had to wear the little skirt or toss the pompoms or dare to crawl to the top of a pyramid, but, in the end, I still became a cheerleader. It seems to be in my DNA.  I’m a social worker, I help people. Or at least, I try. I cheer them on along life, helping them realize their destiny, their best self, or  a way out of chaos and sadness. I love my work with everything I’ve got.

I’m also that way in my personal life. In intimate relationships, in friendships, in everyday encounters, I try to be the one that is a helper rather than a helpee. I’m no saint, not even a truly good person-but I try. Each day. I try.

Sometimes I think that’s my biggest mistake in life.

Today, the first day back at school for little one and I felt like I spent my day singing “two bits four bits” or some variation of rah-rah-rah. Everyone was concerned for her, everyone wanted to know how she was, how she’ll be, how this all came to pass. So I smiled, I recounted the tale, and reassured everyone, truthfully, the she is doing well, that she’s quite the trooper, that  it would all be alright.

At the end of the day I noticed my jaw was killing me.  I realized I’d clinched my teeth for the better part of the day, trying not to cry. I pulled it all off- walking across the playground toward her cottage, helping her make lunch selections, e-mailing her sugar levels to ex.  I got through the day on autopilot.  I answered all the inquiries, smiled, said thank you. I was cheerful.

It’s a defense mechanism I know. Say it often enough and it will be true.

She will be alright.

This is just a curve ball.

We can handle this.

But this is big, bigger than anything I’ve ever dealt with.
Bigger than a divorce. Bigger than failed relationships. Bigger than my health, ex’s health, the health care debate.

I’ve yet to fall apart. I’ve yet to sit down and think. I’ve yet to get quiet.

Because if I get quiet I know  what I’ll hear.

I’ll hear my ex, my baby’s father, ask the doctor about

life expectancy.

She’s eight years old.

We should be talking about playgrounds, and Barbie dolls, and third grade math.

Not

life expectancy.

This is the loneliest I have ever felt in my life.

I feel like a cheerleader without a team. Without a uniform or a damn pompom.

Just me, naked out here without a clue. Yet nothing could be further from the truth.

I’ve got friends and family. I’ve got people I don’t know in any way other than their @name and avatar. I’ve got a network. I’ve got an ex.

I am so far from alone in this.

I just have to re-learn this lesson:

It’s okay to cry.

It’s okay to ask for help, or guidance, or a listening ear.

It’s okay to ask to sit on the sidelines and watch someone else cheer for a while.

And in the end, it really will be okay.

There  simply is no other option.

Driving home from school with my youngest today the radio was interrupted by the sounds of the Emergency Broadcasting System. The horn like noise followed by the beeps followed by more horns then the robotic voice dispensing the information that severe weather was headed our way. I knew that already, as I’d seen the lightning strikes down the road before me.

  Years ago ,when I  first moved to Chicago, I found myself at work one day when I heard sirens wailing across town. I panicked as I knew that sirens means DISASTER! BOMBS! GET UNDER THE DESK! yet no one around me moved, or even seemed to notice the shreaking sounds of impending doom. That’s the civil defense alarm, shouldn’t we try to find out what’s wrong? I asked, trying to keep my voice calm.  After what seemed like years, but was most probably a few seconds, my office mate informed me it’s Tuesday, they always test the sirens on Tuesday at ten.  With that I thought to myself  if we ever are bombed I hope it doesn’t happen on Tuesday or we’ll all die sitting here at our desks thinking it’s the test.

I liked the sirens. I like the EBS horn on the radio. I like knowing that something bad may be headed my way. Knowledge is power. Knowledge means I can get under the desk and pray before the bomb hits.

There are no EBS warnings in life.

This weekend we took my little one into the pediatrician for what was to be a routine visit. Within ten minutes the doctor, a personal friend, looked up at us and said- Her blood sugar is over 500, so we will get her up to the children’s hospital and you can see the pediatric endocrinologist and take it from there.

Or he said something like that. In all honesty time stopped and I’m not sure what he said, or what I heard. I just know I looked over at my ex and he had tears in his eyes, and I knew something was wrong, very very wrong.

Over the course of the weekend we heard a lot of different voices telling us the same thing. Our baby is a Type One diabetic at the age of 8.  She will be insulin dependant for the rest of her life, in the absence of new discoveries, cures, or any other miracle. And believe me, when it’s your baby, suddenly miracles become rather important.

In an instant everything changed. Life as we knew it erased in one fell swoop.

I wish there’d been a siren, or a horn, or something to warn us that this was coming.

Though I wonder if it would have helped. Would knowing make any difference? Is there really any way at all to prepare for this?

The past four days have been a whirlwind. I’ve yet to sit down. I’ve yet to rest.      I’ve yet to allow myself to think, to acknowledge, to let it all sink in.

I’m waiting on the little robotic voice to come on after the horn , you know the one that says, in the event of an actual emergency this message would be followed with instructions…

I need my instructions.