Tuesday, May 1, 2018

Which would you prefer? Tarantulas or scorpions?

Yesterday, I stared into the abyss of my well stocked pantry, and I hit the "wall."  The wall that comes out of nowhere, that you stand it the base flat on your ass and wonder how you got there.  The wall that is so tall that it seemingly has no end.  And all you have is a teaspoon that you mindlessly and frantically use to scoop out any and all dirt from the base in the vain hope that if you can't get over it, at least you can go under it.  But the foundation is deep and you are so so tired.

Meal planning or any effort at all to put food on the table has become so disheartening and stressful, I don't even want to eat anymore.  But I do, spoonful by spoonful, because of who is watching.  Because if I require her to, how can I not?  Putting food in front of her can go one of two ways.  She grudgingly eats it like a robot programmed to pick up a spoon and shovel things from her plate to her mouth. Or it can go like today, where you'd swear that you must have put a plate of writhing cockroaches in front of her by the sheer veracity of the reaction.

And in some ways, maybe I did.  I've had it described to me that asking her to choose between two different meal options is like asking her to choose between eating tarantulas and scorpions.  I spent at least 20 minutes being screamed at because I had the audacity to put food in front of her and expect her to eat it.

Just keep digging.  Spoonful by spoonful.

Monday, April 16, 2018

Stop saying God is Good

Stop.  Just stop.  It's like "everything happens for a reason." 

I'm not saying God isn't good.  But how can you reconcile a "good" God with one who allows a child to die. 

I like this description I read on the blog "Still Standing."

"You got the job! (God is good!)
You closed on the house! (God is good!)
That car barely missed you at the intersection! (God is good!)
You’re carrying twins! (God is good!)

See where I am going with this? Because the reality is that if you believe God is good, then He’s good all the time.

Like when you lose the job. Or the house is foreclosed. Or your car is totaled. Or the twins die.
And while I believe that to be true, because I believe the nature of God is unchanging…would you ever in a million years tell someone who just lost their baby to cancer: “Isn’t God sooooo good, though? Wow, didn’t He do it right?”"

I recently heard someone say how we find our calling in life is by the #&*! we go through.  The bad, horrible, painful stuff.

And while I don't disagree with the premise, because all the calling's I have found are directly as a result of the trauma's I've experienced.

But it floats around in your brain the same way "everything happens for a reason."

There is no reason that could ever be "good" enough to justify the loss of a child.  Or a spouse.  Or an illness of a family.  Or war.  Or crime.  Sure, good can come from a horrible thing but that does not JUSTIFY the bad.

When people share their pain with you, they aren't looking for comfort in the sense of "this too shall pass" or "good will come of this."  They just want a hug.  And validation.  That their pain is justified.  That they have a friend who will walk with them through this season.

And yes, good can come from it.  But maybe that's something they need to discover for themselves on the other side of the season.

Sunday, April 1, 2018

Jesus Christ Superstar and Eating disorders

When looking to find the time of the Jesus Christ Superstar performance, I stumbled on something that stuck with me.  It was an article in People magazine sharing how John Legend started juicing in the past few days before the performance.   In it, John's wife shares how "John's eating really healthy now.  He has a shirtless scene he's really excited about, but he's actually starting to fast, like juice fast, starting today."

Eating healthy and juice fast?

As I sat and played with my beautiful daughter this afternoon and she was playing some sort of "animal adoption" game with her multitudes of stuffed animals, she set aside one with the comment of "this one is too fat to be adopted."  Moments later she repeats the scene.  When I interrupt her to ask her why she thinks the heavier animals won't be adopted, she just shrugged and said that her sister was saying that.

I was perplexed.  Diet has never really been a "thing" in our household.  Unless you count the diabetes diet, which thanks to gestational diabetes x2 was a thing.  But never the fad diets.

And it struck me tonight.  It is pervasive in our lives anymore, these messages of you are too heavy.  You need a diet.  Here's the perfect diet for you.  Things like the People article and the inference that a performer felt they needed to go on a crash diet to "look good for a shirtless scene" just leaves you in dismay.  Especially when you are working with a child with an eating disorder.

Even though her disorder is not linked with a body image issue but rather anxiety, her frequent statements like that sets off so many warning bells in my head.  How am I supposed to teach this child that beauty lies within when society is teaching that it lies on the surface?

I am reminded in this of the song by Zach Williams, Fear is a Liar.

"Fear, he is a liar
He will take your breath
Stop you in your steps
Fear he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
'Cause fear he is a liar"
Fear.  He is a liar.  Those voices, they are a liar.  You are beautiful as you are.  In your skin.
Believe it.  Own it.  Don't starve yourself so you feel that you "look" the part.

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.