The New Us

For almost a year now, Hannah has been sick.
We've been back and forth to the pediatrician,
x-rays, blood tests, missing school here and there.
In December she started getting sicker, losing weight.
Back to the pediatrician.
He called later that day to say he thought she had an eating disorder,
anorexia.
We were floored.
We started staring at her while she ate
spying on her outside the bathroom door.
In my gut, I knew it wasn't the right diagnosis.
I came right out and asked her one day,
"do you throw up?"
Her response was, "mom, I haven't thrown up in 9 years"
I believed her.
After pulling her from the last few Nutcracker recitals
due to extreme weight loss and fatigue and stomach aches,
we made more appointments.
This time with specialists..
not only with the eating disorder team for adolescents
but with a GI specialist.
After seeing the GI doctor
we canceled the other appointments.
January brought trips to the hospital for
blood work
ultrasounds
more and more blood work
and ultimately
an endoscopy/colonoscopy.
Biopsies confirmed it is
Crohn's disease.

I'm very familiar with Crohn's disease as my sister has been living with it for 20 years.
She has been such a great source of information and support for us.

So, now we know.
And knowing is a relief but still, we worry.
It's a different kind of worry now though.
No longer the "what if it's this or what if it's that"
But the worry of knowing that this is a lifelong disease.
With no known cure..
yet.

And so I read.
Everything I can on this disease.
Waking Steve at night to talk about prednisone, and 6MP, and side effects..
and probiotics and naturopathic doctors.
We join www.ccfa.org and learn about support groups and fundraisers.
I alter our diet.


I'm so thankful to live where I live.
Boston's Children Hospital is an amazing place.
I was moved to tears the day I was there for Hannah's procedure.
Sitting in the cafeteria,
drinking my tea..waiting,
I looked around to see so many sick little children.
But, ironically, it was a happy place.
There were
clowns walking around playing the banjo,
colorful displays and aquariums.
And smiles.
Everyone was smiling.
Not just the doctors and nurses that we met,
but the janitor we met on the elevator,
the cashier at the cafeteria,
and the police officer that let us take Hannah in her wheelchair
to the Bertucci's across the street for dinner.
And then he gave us his cell phone number in case we needed
his help when we were finished eating.

I'm so thankful to live in this time.
Where information and help is all around me.
Whenever I want it.

I'm so thankful for the family and close friends in our life.
Your thoughts and prayers,
and cupcakes and flowers,
and sweet gifts
and shopping sprees :)
have been so appreciated.


Hannah is back to school
She missed about 3 weeks.
She is getting healthy.
She keeps a food diary and takes her meds.
I'm so proud of her.

This is the new us.
And it's going to be ok.