Monday, March 19, 2018

Food is medicine. And life stops until you eat.

There is nothing more frustrating than watching your child and begging her to eat.  As parents, there are many things we can't control - but one thing you never expect to lose the ability to do is to encourage your child to eat.  Food is life.  It's what gives you energy.  Fuels your body and mind.  It is essential to your survival.

Today was her first day back in school after break and a new lunch requirement.  She had been able to sneak around the office staff due to their multiple tasks they had to accomplish.  She had been caught a few times throwing her lunches away.  So she had to eat in the classroom, one on one with a teacher.

And again, she tried to hide her chicken and chips in her trash.

Now - this is not unusual I'm told for kids with eating disorders.  She is not a bad kid.  Anything but.  She is smart, sweet, unique.  But to her, food has become the enemy.  Food leaves her with such anxiety that she thinks she is preserving her life by not eating it.  And she will do anything to get out of eating.

And it is apparently painful.  This process of getting her to eat.  More than just emotionally painful, but physically.  I had my own panic attack this morning and if this is how she lives each and every day.  I didn't want to eat most of the day.  But I did.  I knew it was vital.  More so now that she is watching.

Food is medicine.  And life stops until you eat.  In more ways than just sitting at the table.  And more than for just her.

Food is medicine.  And life stops.  And I just want to scream at her to just eat!  Just eat and this will all be over.  Just eat and you can go back to being a kid.  And the joyful, imaginative play.  Just eat.  I can't live without you.  And I will not let you starve yourself to death.

Wednesday, March 14, 2018

Back in the alphabet soup of life

"Life is like a box of chocolates.  You never know what you're gonna get."  ~Forrest Gump

When you first arrive in the NICU (or any hospital experience, really), you are immediately thrown into an alphabet soup that is very difficult to decipher.  A's and B's, IVH's with varying degrees.  C-PAP, NG, O2.  CC's and ML's.  Numbers and letters that make your head spin.

Beyond the NICU, you are innundated with adjusted vs. actual age.  Developmental delays.  Quarantine.  Therapies of every kind from speech to feeding to physical.

By age 3, you think you are coasting.  You graduate from most therapies (if you are lucky) and your kid's age is just their age.   You are in the clear.

But are you really?  Are you really ever in the clear?  Even if your child is term.  This isn't even a pre-term thing, although there is a link between this disorder and prematurity.

Avoidance/Restrictive Food Intake Disorder (ARFID) and Generalized Anxiety Disorder (GAD)

We've noticed since starting kindergarten that lunches were not being finished.  Some came home with almost all of the food that was sent.  She would tell us she didn't have time to finish it all.  Or that she didn't like it, even though she was regularly given a choice as to what she would like.

By First Grade, and her ADHD diagnosis, we felt she was probably too distracted by her friends to eat.

By Second Grade, more and more lunches were sent home essentially untouched, and she started refusing dinner as well.  We'd make what she requested and then refused to eat it.  When we pushed, she said she was afraid of getting fat.  Which, for a 45 lb 8 year old, is hard to imagine.  On her follow up for the initial trial of ADHD medication, she had lost 1.5 lbs.  And she has consistently fallen off her curve.  First, we thought she's just putting on height.  Then the next year she still grew...but started dropping percentages.  This year, she did not put on much weight or height.  With her several statements (and they really were very few...but they were alarming hearing this from an 8 year old) our pediatrician sent us to the Eating Disorder Clinic.

So, what is ARFID?  

According to the Center for Eating Disorders at Sheppard Pratt, ARFID is defined as: "Individuals who meet the criteria for ARFID have developed some type of problem with eating (or for very young children, a problem with feeding). As a result of the eating problem, the person isn’t able to take in adequate calories or nutrition through their diet. There are many types of eating problems that might warrant an ARFID diagnosis  – difficulty digesting certain foods, avoiding certain colors or textures of food, eating only very small portions, having no appetite, or being afraid to eat after a frightening episode of choking or vomiting."

In our case, things really spiraled downward after she got the stomach flu back in February of 2017.  She spent months regularly crying she was afraid she was going to throw up.  Every night she would panic if she didn't have a bucket by her bed because she was so scared she was going to vomit.  This lasted for 6 months or so before we finally were able to sneak the bucket out of her room and she stopped asking for it.  In December of 2017, she had a minor version of the stomach bug, immediately prior to being assessed by the clinic.  During that assessment, she showed signs of malnourishment and although it wasn't severe, we started Family Based Therapy (FBT.)  FBT works with families to develop strategies and skills to increase a child's ability to eat enough to maintain nutrition and growth.

Come February of this year, she came down with a bad tummy bug and spent hours vomiting even water.   And she started skipping multiple meals and snacks a day and lost over 3 lbs.  And hospitalization to get her weight restored was a serious possibility.  She refuses almost everything, even old standby favorites and it really is a battle to get her to eat even a few bites of her food.   She's thrown food away and lied and told teachers and us she's eaten it.

Her body has difficulty recovering from any sort of illness.  She just doesn't have enough resources available to maintain nutrition and healing. 

Enough of chocolates with different kinds of filling.  I'm throwing the box out, I've had enough curve balls.

Things you need to know:
1.  We did NOT cause this.  This is biological and has a variety of triggers that causes it to come to the surface.  We expect our children to eat a variety of food and well balanced meals and diets.  We gave them choice in what they ate.  Each school lunch is packed with input from them.  We ate at the table, together as a family.  We did everything we could to ensure proper nutrition.  But we ultimately can not hold her down and force the food down her throat.  This will be a long process which seems like it will require that we insist she eats what WE put in front of her.  No negotiation.  No ifs, ands and butts.  No choice.  Our job is to put healthy meals in front of her.  Her job is to EAT them.  So if you eat with us, know this.  She might scream, fight, cry but for the love of everything do NOT for one second suggest that she ate "enough" and to just let her go.  Or bribe her with ice cream or give her attention.  We are not torturing her (although she may act like we are.)  Chances are you won't see this behavior as she puts on a good front in public.

2.  This will be a lifelong battle.  We are working with her team to help her develop the resources to manage this as she grows as the fear to eat will always be there.

3.  This CAN kill her.  If she can't manage her fear of vomiting (part of the GAD) then she will starve herself to death.

So here we are again.  In another club no one wants to join.  This is the 3rd club we've been thrown into.  Infertility, prematurity, and now eating disorders.

It's hard to be hopeful at this point.  We are only a few months into this very long journey.  There is no light at the end of the tunnel right now.  We are staring into the black abyss wondering if we will emerge from this intact.  We always seem to overcome, but right now we are tired.  And preparing ourselves for the war.

Because war it is.  And a warrior is what she is.

Tuesday, November 7, 2017

We shall overcome

It's been a rough day for me, and it seems like at times like these are when I need to sit down and write again.  I wish I felt the call to write in good times as well anymore, but I guess those times come out in my photography.  It's times like this where it seems like the creative outlet of my photography does not cease the voices in my head and I turn here to give voice to them and release them from my mind.

I started this blog with the purpose of keeping family members up to date with my life.  It was easier to just get things out in the moment than remember them for Christmas letters.  Which I never seem to write.

Little did I know what it would turn out to be.  A chronicle of the lives of 3 amazing children, but really one super hero.

Yesterday was her 8 year check up.  Yesterday was the day she had the awakening that she wasn't like other children.  That she was different.

Yesterday, I sat with my child and held her while she cried.  And asked me why God made her this way.  And if this would ever go away.

She asked me if we were disappointed in her that she struggled to keep her attention where it should be.  She worried that her grandparents would be mad at her.

She talked of things far beyond her 8 years.  And, of course, I bawled with her.  My heart in pieces on the floor.  And the conversation has been at the front of my mind all day.

There is no manual for parenthood.  No book to read to tell you how to deal with these types of conversations.

But I told her, and I told myself of all the things she has overcome.  That I know she can do this too.

I told her of how she was born breathing.  Well before her lungs should have even been developed enough to do so.  Of how she had to learn to eat, and that she showed that she was ready to try well before her gestational age said she should have been.

That she came home before her due date.  Well before her due date.  And how amazing that was.

I told her of how fast she has brought herself up to grade level this year.  Of how smart she was and how proud I was of her hard work.

When you bring a child into this world, you never hope or wish for them to experience challenges.  You want them to have everything that you didn't.  I just hope that I can teach her to love herself for who she is.  Even with all of the challenges she experiences.  That the girl that she is - is so special and unique and someone to be treasured.  And that this won't keep her down.  She has shown her fighting spirit many times over the years, and I know she can do it again.

Tuesday, October 17, 2017

It's a funny thing.


It sneaks up on you in ways you never expected.

I thought I was ok.  I thought, hey, I even was able to go back and look at "on this day memories."  I got this.  This October will be different.

But it isn't.  Will it ever be?  Isn't 8 years enough?

How do I know it's here?  It dawned on me today.  I've been feeling stressed.  Overwhelmed.  Anti-social.  I thought it was just because we've been working 7 days a week.  Between 3 businesses and children, I thought I was just tired.

Nope.  That overwhelming, anxiety filled, you-just-aren't-good-enough-never-will-be mantra that surfaces every year at this time.  It always feels the same.  Most of the year, I can keep it at bay.  But October?  October is a lost cause.

I still don't know that I can read my blog posts from then.  Hopefully, some day she will.  Hopefully someone will stumble upon them and read the story of an amazing little girl did.  And it will give her hope.  And I will be glad that those memories are stored somewhere.  Even if I can't manage to deal with them.

October sucks.  Prematurity sucks.  PTSD sucks.

Tuesday, September 19, 2017

I see you

One of the hardest things for a parent is to watch their child struggle.

But there is something I want you to know when you are grown and maybe I'm gone.  And maybe you stumble upon this in some random memory or search or something.  I want you to know that I see you.

I see the girl who sees someone or something get hurt and immediately jump in to try to help.  I see someone who is so full of compassion that her first reaction when I got hurt was to get a plastic bag to fill with ice.  I see someone who told me not to worry because you'll be ok so I wouldn't hurt anymore.

I see someone who is struggling with things well above her age and who doesn't know what to do.  I see someone who has immense strength and tenacity and will, who has shown this since the day she was born.  Well before her time.

I see someone who puts such complicated thoughts together that she often leaves me in awe of just how smart she is.  I see someone who can reach the stars, if only she'd believe in herself.

I see you.  I see a beautiful, brilliant, strong, courageous, tenacious girl who will move mountains.  And it breaks my heart to see you see yourself as anything less.

Thursday, November 24, 2016


Today is a day we celebrate all the things we are thankful for.

And though it is sometimes hard to remember all of the blessings we have, especially in those times where it feels like life is doing its best to bring you down, it can be helpful to be reminded of what you do have.

But today, we spent with my family.  As I was rocking my youngest to sleep, I was listening to my oldest having a conversation with her grandmother in the other room.

I don't remember exactly what she was saying.  But I remember just being in awe at the intelligence in her statements.   And how observant she was.

And it brought me back to this picture 7 years ago.

And how little we knew of what the future held and how scared we were.  She still wasn't eating much by bottle and we had no idea of what her long term issues would be (if any.)

I just had to smile, looking back on it.  And how thankful I am that it turned out the way that it did.  And how thankful I am that she is in my life, the lessons she's taught me.  And continues to teach me.

Tuesday, November 15, 2016

Beating those giants

"Don't you be afraid

Of giants in your way
With God you know that anything's possible
So step into the fight
He's right there by your side
The stones inside your hand might be too small
But watch the giants fall" ~Francesca Batistelli

Most days, I feel like the stones inside my hand are too small.  That they will never take down the giants in my life.

But when I heard this chorus (Francesca Batistelli again, for the win!) I immediately thought of my first born.

Her stones were incredibly small, but boy did they take down some giants.

I can't even take credit for her taking down those giants.  SHE did that.  All on her own.

I wish I could remember exactly the words our favorite nurse used to describe her.  Small, but mighty.

She's overcome so many challenges in her short life already and I know she'll overcome so many more.

You can't keep this child down.

"We could really live like this
Can't you imagine it
So bold, so brave
With childlike faith
Miracles could happen
Mountains would start moving
So whatever you may face" ~Francesca Batistelli