Thursday, February 9, 2012

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,
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
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..

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 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.


  1. I am so sorry. Bless her. I'll keep your family in my positive thoughts.

  2. It is going to be ok Pam! Hannah too will learn all about this disease and she'll own it like the rock star she is!! And you're right in that we are so lucky to live during this time of endless information at our fingertips. Keep reading and learning. My prayers are with you all.

  3. OH Pam! That is so challenging and frustrating! I wonder so many times how long it could take doctors to finally get to the bottom of some things. I guess it's where mother's intuition must kick in to take those steps to move forward. And as a former professional ballerina myself, that initial diagnosis frustrates me. I had a dear friend on the company with lupus and for years, she was pegged eating disorder. It's nice to hear a mother believe in her girl and take the necessary steps. You are both in my thoughts today!

  4. Having a child who is suffering is more awful than words can express. I am so happy you have a diagnosis and you can now move forward knowing what you and your daughter are up against. My Mother was diagnosed with Crohn's Disease over 20 years ago. She has controlled it with diet and prednisone. My thoughts and prayers are with your family and daughter.

  5. What a great mama she has to walk her trough this time in her life. You are right, there is so much to be thankful for and so much help now that you know what the problem is. I know it has to be hard, but with an attitude like yours...she will be just fine!

  6. Oh, Pam. . .so glad you got to the bottom of things. It must have been so hard to not know what was wrong! I hope your new normal is as peaceful as possible under the circumstances!

  7. So glad that you are getting the right help now. Keeping you all and hannah in my thoughts. Hopefully she will be feeling so much better soon!

  8. Wow. So glad you were able to get to the bottom of things and that your sister can help and support y'all through it.

  9. so glad you have an answer-- even if it's a hard one. :( thank goodness gluten free stuff is so much more available now.... but i am so sorry you have to see your baby hurt. that is the absolute worst. so glad you can move forward with answers instead of still worrying/ wondering about what is going on!

  10. I've been wondering where you've been. If you hadn't posted by this weekend I was gonna shoot you an email.
    Crohn's? Wow. She's so young to have all that hanging over her. My prayers are with you and your family, and I hope and pray that this new normal will FEEL normal soon.
    Love you.

  11. I was also hoping everything was okay, since you hadn't posted in a while. I am so sorry to hear the news - but yes, good to at least know what you are dealing with. Your new normal will take some getting used to but try to focus on the small steps that are becoming new regular old things. Life long heath issues are really hard and overwhelming, especially at first. She is lucky to have you as a mom.

  12. Oh friend! I'm sending you a big hug. I love how you wrote this post. I want to cry, but then you have such a good outlook, and I smile at how positive you are. It is so wonderful that we have great doctors and hospitals in this country. Kevin's cousin has lived with this disease his entire life, and our old neighbor was just diagnosed with it, in his late 20s. Having a diagnosis is always half the battle, even though it's hard to hear. I will be adding you all to my prayer list. xo.

  13. Oh, I am so glad you have a you know and can do exactly what you are doing....everying to help your precious keep up the faith. My husband's cousin also has lived with this and while she has trying times...she is happy and so full of life..she doesn't miss a beat...and when she has to "miss a beat" she makes up for it when she is back on track.....prayers to you all.

  14. big, big hugs, pam.
    hannah is so lucky to have you as her mother.
    illness can sometimes be a blessing in disguise.
    or a teacher, helping you to grow and see things in a new light.
    learning to be even healthier than before the diagnosis.
    i will help you to find the silver lining.
    all will be well ♥

  15. Sorry to hear this, but at least you have a diagnosis. I will keep Hannah and your family in my prayers.

  16. Oh gosh, what a hard thing to go through for a young lady! My brother-in-law also has this disease and with medication is doing very well and can practically eat normally with the exception of heavy dairy.

    Hannah is an amazing little girl and will no doubt be a strong person throughout life- it's also nice to have such an amazing support system too! ;-) Keeping everyone in my thoughts and prayers, it will all work out...

    Hugs from Kansas~

  17. I am so glad you finally got some answers and I know you will do everything in your being to help Hannah navigate her "new" self. Love you Pam!

  18. first of all, i'm so sorry about the diagnosis ... but pam, you are so right to have the attitude you do - thank god you KNOW and now you can get proactive and do everything you can ... my youngest has very similar issues, we see a pediatric GI specialist at Mass General, but after years of searching for answers, still nothing ... I'm waiting for the day when her symptoms either go away or take a sharp downturn like hannah's - but I absolutely hate the not knowing :( we might be meeting for that tea sooner than you know, i'd love to learn more about your journey ...

  19. Pam, You are such a wonderful mother. Hannah is lucky to have you. It will not be easy, but I know you will handle this and it will be okay. Love to you and Hannah.


  20. Pam, so very sorry to hear about what you, your daughter, and your whole family is going through. You will be in my prayers. My Abigial (4ys) has Eosinophilic Esophogitis, not Chrohns, but a GI disease also. I know that it is shocking and terrifying. You can do it; you are a wonderful mother and cook. You heart will lead the way. Hang in there.

  21. left a comment earlier but not showing.
    Pam , you and Hannah are smart to learn together...a whole new adventure. Hope Hannah gets caught up at school quickly!
    Love your new header too!

  22. You and Hannah are lucky to have each other! It WILL be okay. It will not be easy but it will be okay. I am here if you need me. xoxo

  23. Wow, Pam! We will put you all on the top of our prayer list. She's so blessed to have you to take care of her.

  24. First a big hug and kisses and for one of my favorite girls....I can only imagine the stress that you have been going through. Children's really is an amazing place. From having worked there to having to take Ben there as a toddler I know the strength that permeates throughout that hospital. We are all so blessed to live so close.
    I have faith that Hannah is going to do well and also hope that maybe we will figure out this disease process in the future.

  25. Pam, I'm just catching up on some blog reading..... bless your heart with all the worry you must have been going through! My nephew has ulcerative-colitis and my sister used to work in GI at a hospital so she had a sneaking suspicion what it was..... so she was a bit more prepared emotionally. What a wonderful experience you had with the hospital.... isn't it so great to have that so close!