Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Tuesday, December 1, 2015

The Little Monster Called Anxiety

Anxiety is like a tiny monster inside of Eliza's body that from time to time grows into an uncontrollable, very large monster.  

There is an ebb and flow to its appearance and it is terribly unpredictable. When it does take control sometimes certain techniques like breathing, chanting and other rituals can put it back in its dark place where it will lurk, but not be in charge of Eliza's every thought and action.

But there are times that it can't be controlled.  And we are both held hostage to something we cannot see or hear.  It is those times that I weep for my daughter and the uncontrollable fear which has gripped her.  There are nights I can walk the dog right in front of our apartment and she just wishes me luck and reminds me to use my Judo moves if anyone bothers me.  She can watch the dog and I from the window.  I can reach to the glass to tap on it so she knows we are okay, all of five feet away.  And then there are the nights that she begs me not to bring the dog out.  Or the nights when she loses sight of us for a moment and begins to wail and bang on the window, in hysterics.  After one of those nights she will literally follow me through the apartment holding fast to the back of my shirt, so she is "safe."  And then we sit and together begin one of her chants or rituals to help calm her.  Sometimes it takes 15 minutes, other times it takes 2 hours or more to calm her.  

We are also hostage to this monster in that there are so many places we cannot go, places I know Eliza would enjoy, but for the anxiety that may, or may not, rise up and take hold of her.  Just the other night we had to leave a restaurant because there were televisions showing sporting events.  Eliza loves sports and enjoys watching the Knicks.  But since there is just that chance, no matter how slim, that something frightening to her will appear in a commercial or a trailer, that causes the panic.  This was a restaurant that just over a year ago Eliza loved to go to and was one of the few places where there was something she would enjoy eating.  For now, we have crossed this restaurant off of our list, to be tried again some time down the road.  Or not.

Anxiety has caused Eliza's world to grow smaller as the list of places she used to go diminishes.  I could rant on about the causes of her anxiety and panic disorder, but I've done that before, it doesn't change anything and at this point the causes don't really matter at this point.  

So while Eliza's world may be smaller, we try our best to make that smaller world as rich as possible.

Monday, June 1, 2015

Being Anxious and Having Anxiety are Two Very Different Things

When I speak to people about Eliza’s anxiety, I am often met with comments like “oh I know what you mean, little Ollie was so afraid to put his face in the water during swim lessons” … or something like that.  Here’s the thing, there is a huge difference between a child actually diagnosed as having severe anxiety and an anxious child.  It is perfectly normal for a human being, young or old, to be anxious about sticking their head under water (let’s face it, we don’t have gills), meeting new people (could be a psychopath in the crowd, who knows?), taking a test (I personally was nauseous before every exam right through the Bar Exam) or learning to ride a bike (that concrete or black top careening at your face as you start to fall should make you anxious about the end result).

I know most people think they mean well when they say these things (at least some of them do).  Others just want to latch onto a new diagnosis for their own kid.  This latter group of people need to be evaluated for Munchhausen's Syndrome by Proxy, since I can assure you having a child with actual severe anxiety with associated panic disorder, as in can’t leave the house only under certain conditions, is often found quivering and sobbing in a corner because of a sudden panic attack, and who can’t enjoy many of the simple things that other kids her age enjoy, is no picnic for that child.

There are various classifications of medications that can help reduce anxiety in children, none of which seem to work for Eliza and which in fact exacerbate things.  Talk therapy and play therapy have helped, along with Cognitive Behavioral Therapy.  CBT recognizes that things like anxiety and panic disorder can’t be controlled through rational thought.  So there is no use in persistently telling Eliza there is nothing to worry about or that it is just her imagination. It is thought that the anxiety and panic disorder arise from various external and internal stimuli (such as having to deal with a nasty little classmate who figured out her phobia of blood and repeatedly told her he was making her bleed).  So the child psychologist that Eliza sees, and whom she adores, focuses on the problem and tries to work with Eliza to develop strategies to address the problem. She also addresses Eliza’s specific fears and her avoidance behavior (like running away from a sign that has one of the lovely bloody posters for the latest gory movie, or running from the school yard into a safe place in school if some other kid falls and is bleeding).  Although blood is a particular phobia for Eliza, there are many others that can send her into a full blown panic attack.  Other times the panic attack occurs for seemingly no reason.

Anxiety and panic not only cause havoc with Eliza’s daily living, but also seriously disturb her sleep.  She prevents herself from sleeping because of unidentifiable or irrational fears.  The usual tricks to get a child to sleep no longer work.  Melatonin is useless at this point and for various reasons other over the counter solutions parents try, like Benadryl, are things Eliza can’t use.  I use supplements in an attempt to try to calm her and help her regulate her internal conflicts.  So far Magnesium in a pretty high dose, a B complex and Fish Oil offer some relief for her.  Breathing exercises, yoga and essential oils also seem to help.  The critical thing is to try to stop the anxiety from turning into a full blown panic attack before things get out of hand.  Sometimes I can do it, other times I can’t.  And when I can’t, we just sit together, often for hours through the night, under her tent with fairy lights and I let her talk, get angry, cry and talk some more.

I hadn’t intended to post about the severity of Eliza’s anxiety and panic disorder, but I suspect there are other parents out there with children in the same boat.  It seems it is all well and good to post about physical health issues in children, but almost taboo to post about mental health issues in children.

So the next time someone tells you that there child can't participate in something because it is too anxiety provoking, please just take them at their word.  Eliza and I are lucky to have friends who understand this and have gone out of their way to accommodate Eliza's fears so that she can still participate in fun activities with her friends.  Oh, and if you have a  child who thinks it is all fun and games to taunt a child with anxiety or, worse yet, actively try to provoke an anxiety attack by playing on the other child's fears, get your kid some help.

Thursday, January 29, 2015

The Dragons Eliza Wants to Be.

I recently posted about Eliza's ongoing, and worsening, eating issues and how basically after almost 9 years of dealing with this I not only feel like the last man standing at the OK Corral, but that it is really a losing battle to ever get good nutrition into Eliza. You know, by eating, the old fashioned way, like 99.99% of the world does, enjoying a meal, maybe trying something new, or even just sticking to a handful of standby foods, which still afford your body what it needs.

Eliza has lately begun to talk a lot about her two new favorite dragons. "Unknown" and the "Night Light Dragon." 

Tonight at dinner at her favorite restaurant (yes she has one, it makes awesome Shirley Temples and they refill my wine without having to be asked) she drew the dragons below in her sketch book.

Keeping in mind that pen and ink is not Eliza's best medium, the first dragon below has a long tail, big eyes and a night light (a star, just like Eliza's night light) at the top of what looks to be a long tube.  

And it has the words: "Food Goes Here!"

This drawing depicts the dragon named "Unknown."


Unknown has the ability to generate his own food by the combination of water and love (depicted by a bottle of water and a heart).  Like the Night Light Dragon, Unknown does not have to eat.  

Both the Night Light Dragon and Unknown can eat, if they want to, if it is something they enjoy.  But they don't have to eat for nutrition or any of the myriad of things that they cannot tolerate.

I don't know if I am more fascinated by Eliza's creations or scared by them.  For her whole life I have managed to avoid having her use a G-Tube.  From giving her a bottle every two hours for years, to spending your average American's retirement fund on every kind of therapy known to man and woman (mostly woman since I have yet to run into a male feeding therapist).

But what if this is what she wants?  She certainly knows what a G-Tube is and looks like. 

When I asked her about the Night Light Dragon and Unknown she said they were very lucky because they were born with their tubes and didn't need an operation to get them.

This whole thing reminds me of two books I read in elementary school, "Karen" and "With Love From Karen" by Marie Killilea. Karen had either cerebral palsy or polio (I can't recall which).  She and her family struggled for what seemed like years to teach her to walk.  She was eventually able to walk with crutches rather than use a wheel chair. My main recollection of the books was when Karen decided that she would rather use a wheel chair since she could see the world with her head held up, rather than always looking down when she used her crutches.  I recall that her family saw this as giving up, but that Karen saw this as freeing herself from the difficulties of walking with crutches, never having her hands free and always looking at the ground, not the sky.

The story of Karen really resonates with me, because it seems to me that Eliza is reaching an age where she is starting to want to decide how she wants to live and what she can tolerate and what she can't tolerate.

We are a society obsessed by food, good and bad, healthy and pure crap. Having a G-Tube and taking no joy in food, save for Haagen Daz ice cream, popcorn and a few other treats is not considered "normal" in our culture and never will be (and certainly is not a diet that can sustain a person). 

Maybe normal though is overrated?