Who is in charge?

Meghan slept until 11:20 this morning.  She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.

We had woken earlier, Felix and I – but not too much earlier.  We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan.  She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off.  We have a lot of respect for her body.  It gets VERY cranky if you don’t listen carefully.

My three girls... resting together.
My three girls… resting together.

But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.

When she came stumbling out of her room to the sound of the hammer she was dazed but smiling.  After a good morning hug she asked what we had to do today.  When I told her that we were going to stay home all day she leaped into my arms.

Can I read?   Yes…of course.


Can I watch some TV?  Sure.

Can I take my shower later, and stay in my PJs? Absolutely.

While part of me was tempted to lecture her about getting up and showered and dressed, I refrained.  Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.

In so many ways Meghan and I are somewhat different, but also a good deal alike.

Our bodies eventually shut down if they are always on the go.  We need our down time.

energizer bunny

Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up.  They still move like that.  And I still need to stop sometimes.

Now, I have a mini -me.  (And my sister has two! :-))

Me and my girl!
Me and my girl!

So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off.  For most of the month we were on a 7 day schedule.

Meghan switched schools.

We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….


But, we did it.  A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.

State tests – 6 days of them in the last 2 weeks.  Stress – all of them.  But they are over too.

test prep

Yesterday I pulled out Meghan’s spring clothes.  There wasn’t much we could use.  The sandals from last year were a size 6.  She is a 7.5.  The same was true for the clothes.  We put even less away for the fall.  Nothing really.  But we will cross that bridge then.  Right now she is almost 5 feet tall and every inch of her beautiful inside and out.

No wonder she needs to rest sometimes.  Her body is certainly hurrying its way through its growth.

I spent the entire day at my desk.  I just finished about an hour ago when I began to write.  There were bills to file, papers to sort, letters to write.  There is a letter writing campaign I am working on for a stop sign by my school.

There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.


http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html (check that out here)

There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.


I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite.  I thrive on order and organization.  I showered early – like I always do, but I relaxed by creating order.

You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it.  “You plan – God Laughs.”  And I know she is right.

I really should listen to my Mom...
I really should listen to my Mom…

However, in this world where so many things are so far out of my control – I have a compulsion to control what I can.  I can make sure the floor is clean, and the bills are paid, and the laundry is done.  I can make sure there are always cupcakes for Meghan in the freezer in case there is a party.  I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.

Crazy?  Maybe.  But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.

The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning.  This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up.  I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption.  And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.


That is how it goes.  Cowden’s Syndrome keeps us hopping.  And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.

So – for tonight, the floor is clean, the list is made, the desk is organized.  For tonight I can rest, and gear up for whatever this week has in store.  And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.

I’m not in charge of this.  It’s in the hands of a power far greater than any of us.

God's got this

I’m only in charge of keeping the fur off the kitchen floor.


The Day Our World Changed…

Our world changed one July day…

It was the summer of 2005 –  I was the mother of an almost 2 year old.  That is when the world started over, and everything began again.

At the time, she received Early Intervention Services for OT  and Speech.

Our house was a busy place.

The therapists were lovely, and my babysitter was a delight.   The therapists often came in and out during my work day.

They left me notes, and I caught up with the babysitter – sure that I was doing everything I could.

Then the speech therapist started coming at night.  She wanted to see me more.  She wanted to talk to me.

“I think you should consider food allergies,”  was how she gently began the conversation.

“Meghan doesn’t have any allergies,” I replied.  I had dutifully, as the pediatrician instructed, introduced foods one at a time every few days looking for any hives.  That is what I knew to be allergies.  So now I was sure she had none- although her face was bright red and her belly distended several times its natural size.

“Look into a gluten free diet,” I was gently prodded.

And I resisted.  Every step of the way.

Finally I read the book “Children with Starving Brains” by Jacquelyn McCandless.  Maybe… just maybe…


“Go and see this DAN! (Defeat Autism Now) doctor, just give him a try…” prodded the speech therapist.

“You think MY kid is on the autistic spectrum??  No way.  She looks right at me when she… doesn’t say a word.  And she …” Well I finished the thought without speaking.  It went something like – ‘she spins around this house like a top – a complete whirlwind.  She doesn’t play, stack, or interact with any toy.  She cries all the time.  She leans over the side of the couch because her belly hurts.  She doesn’t speak at all.  She doesn’t behave like any of my friends kids.”

My heart sank.  I was an elementary school teacher with a Master’s Degree in Special Education.  Could I have been blind to my own child’s issues?

Well, she is way too related to be autistic I told myself.  But her sensory system is a mess.  She can’t tolerate noises, or sand, or textures.  She should be speaking.  And why is her belly so big?

So I read, and I read.  And I finished “Children with Starving Brains,” and I moved on to more.  “Biological treatments for Autism and PDD,” “Healing the New Childhood Epidemics,” “Evidence of Harm…”

And slowly I was rocked to my core.  There was a sense of gratitude for the speech therapist that had pushed just enough, and a sense of urgency for my child who I knew wasn’t autistic – yet… although there were some significant tendencies there.

So we took away milk.  Honestly it happened by accident.

February 4, 2005 I was showering after my first full night’s sleep since she was born.  I am not exaggerating one bit.  And, as I tried to determine the cause it occurred to me we had run out of milk the day before.  THAT WAS IT!

After enduring the on the floor tantrums, the crying, and the freak outs… we got rid of every dairy containing product in my house.

And, as her belly came down in size and softened up, there was this added bonus.  She started to speak.  I mean really speak.  She went from non verbal to almost appropriate over the next 18 months.  The constant antibiotics for ear infections that wouldn’t clear became a thing of the past.

But still… we were on the right road, but we weren’t there yet.

I introduced soy to supplement the milk loss, and dare I say things got worse.  There was this bright red rash all over her face… and everywhere else.  We quickly dropped the soy.

On to gluten.  That was so tough.  What a major life change.  Ingredients tossed regularly.  Gross food.  Costs unimaginable.  But we were getting somewhere.  We were making major progress.

Then there was that day in early July 2005.  I don’t know what set off the melt down to end all melt downs, but it was unsettling to my core.  I could not soothe my child.  She would not let me touch her.  The screaming.  The sobbing.

It was time.

I picked up the phone to look for one of those DAN! practitioners, and found that Dr. Elice in Long Island had availability that week.

Fortunately I had taped the melt down.  Perhaps the best thing I ever did, because my husband was immediately on board.  And its a good thing, because this venture wasn’t cheap.  $1000 consult.  $500 follow up, and $250 a visit after that.

Dr Elice

I was ready.  I am not sure if he met me with fear or admiration that first visit, but I presented him with a chronology of every medical document I had, tabbed, and noted.  If I was going to spend that kind of money… I was going to be sure it was worth it.

Dr. Elice had been a pediatrician for 28 years before turning to DAN!  He knew that something wasn’t right and something was happening to the children he cared for.  So he set out on a journey to figure it out.


Meghan was one of his very first patients, and over the last 7 years he has proved not to disappoint.

He has spent hours upon hours, listening to us, looking at lab work, getting to know Meghan, patiently explaining biochemistry, and trouble shooting her areas of greatest need first.

At the beginning we probably saw him once a month.  That was back when there was a need for B-12 injections, and all sorts of lessons about metabolic pathways.

Now, he has his own office.  A practice to stand behind his philosophy.


Slowly it had become more of a 2 to 3 times a year visit.  Our pancreatic enzymes that have saved so much GI distress, come from him.  He used his brain.  He treated what he saw.  He thought outside the box.  No need for a pancreatic biopsy – “Let’s just try.”

He is a far cut above those who believe to “First  do no Harm.”  He believes to first HELP them ALL.


We walked into his office today to familiar hugs.  He has a new office since we first met.  A new staff.  He is helping COUNTLESS children.

Today he spoke to Meghan directly for at least the first 15 minutes we were there.  Then he spoke to Felix and I.  We spoke about her medications, and our concerns – although the list is so much shorter than it was 7 years ago.

He ordered lots of lab tests – to try to get to the bottom of a few things.

13 vials of blood today.  We will try for the rest on Saturday.  And a 24 hour urine test on the horizon.

He understands autism, and while I know many friends whose children are deeply affected, he knew that Meghan was not to be one of those kids.  He knew that while she is metabolically similar, there were some significant differences.  She never received a diagnosis anywhere on the spectrum of autism.


He also understands PTEN. He knows of PTEN Hamartoma Tumor Syndrome.   He knows of its uncanny connection to many autistic children.  He knows of its cancer risks, and its vascular issues.

hope its in our genes

And, knowing this, he will not accept Meghan’s fate as predetermined.  He knows that I will continue to have her checked and scanned, but he intends to help us circumvent the inflammatory responses that will trigger a malignancy or an autoimmune response.

He will get all the lab tests.  He will send them to me.  We will strategize.  There will be new supplements.  Ones to help teach her body that it does not have to sit back and accept its fate as predetermined.

For us – he is the HOPE that we need.  The balance in this rocky sea of medical storms.

He is unique in that he loves my daughter- as a grandpa more than a doctor.  He is unique in the depth of his caring.  He is unmatched in the extent of his love.

Almost seven years later, I shudder at where we could have been.

Today we are thankful for one of the good guys.

Thanks, Dr. Elice for working for our kids…