Tuesday, June 1, 2010

How I Got Here

The first time I thought something might be medically wrong with Grace was in the car. I was driving from my home in Massachusetts down to visit my parents in New Jersey. It was my mother's 70th birthday and we were throwing her a surprise party. The ride usually takes about 6 1/2 hours. My husband was away on business and planned to fly in to meet us right before the party, so I'd decided to pile the kids in the car after dinner in the hopes that they'd fall asleep pretty quickly and I'd have a peaceful, albeit long, drive. Ever since Grace was a baby we found this the easiest way to make the trip, by avoiding bathroom and food stops.

After a quick dinner I packed the kids in the car, expecting not to hear much from them until we arrived at the Jersey Shore after midnight. I was more than a little surprised, and yes...MAD... that only 45 minutes into the ride Grace is squirming like a wiggle worm, having to go to the bathroom so badly. That was probably the first time I admonished her for drinking too much before bedtime (cue the Mommy guilt... believe me this isn't the last time it rears it's ugly head). So we stop at the rest stop on the Mass Pike and I bring all three kids, in the dark, in the middle of January, into the bathroom. 20 minutes later we're back in the car, and though I was annoyed I thought that was that.

But that wasn't that. Before we reached the bottom of Connecticut she had to go again. This is only a couple of hours later. Now I'm pissed. I don't think she's sick - I think the bladder gods have conspired against me. So we stop again, in the middle of the night, at a rest stop at the top of New Jersey, and I take all 3, again, into the bathroom.

The next day we get to the party and for some reason it clearly sticks in my head that the first thing Grace asked for was water. That night, sleeping in a sleeping bag on the floor in my mother's house, was the first time she wet the bed - she was 8 years old. I thought she was over tired and didn't wake herself up, and made a mental note to not let her drink too much before long car trips or bedtime.

The car ride home was similar to the ride down, but here's where I'm starting to wonder. My first thought was she had a bladder infection or a UTI. But I knew from experience that you often had the "feeling" of having to go, with no results. She was absolutely full of liquid. (Well, we know now she wasn't, she was actually dehydrating more and more every day, but I'm trying not to highlight the Mommy guilt.)

The next week she wet the bed several more times. A friend of hers came over to watch a movie. Even she commented on how many times Grace went to the bathroom - 5 times during one 90 minute movie! But it was the bed wetting that got me.

So, like so many of us out there, I Googled "sudden onset bed wetting." And there it was. Primary symptom of undiagnosed Type 1 Diabetes. No. Couldn't be. Not her. It was more likely a result of stress. I was certain it was some sort of emotional distress (Did I actually hope that's all it was? Did I wish my daughter was a basket case, not a diabetic?). But maybe?

I waited. Didn't call the doctor. Sure it would resolve itself. A week went by before I called with my concerns. The pediatrician had me come in the next day, Friday, January 23, 2009. She peed in a cup. The doctor closed the door when he came in. Reached for the tissues. Was this really happening? Since Grace was sitting on my lap, he was hesitant to say the words, and simply said, "She has what you thought."

Hats off to all you strong-willed moms out there who were able to hold it together when you heard the words. I'm not one of you. Tears instantly came running down my cheeks, while inside I'm screaming at myself to stop because I can see that I'm scaring my daughter. The best I could muster was slight hyperventilating while biting my lip to stop the tears.

That's where the daze started. You know, the fog that settles and doesn't lift, in my case, for about 6 months. All I could think was that Grace couldn't go to the hospital because she had a Girl Scout meeting and I was snack mom for the week. I had brownies to deliver - couldn't this wait? And my other two kids were at a friend's house. It was Friday at 4pm. What do I do with them? And where's my cell phone? Sh#@! I forgot it at the house where the kids were playing. Stop crying! Stop crying! Stop crying!

So I stopped, knelt down, looked Grace in the eyes, told her she was going to be okay, and hugged her. We were both shaking, or maybe it was just me. I was on auto-pilot. I retrieved my cell phone, asked the friend to keep the kids, yes, delivered the brownies, went home, packed, and went to Boston Children's Hospital for the next 3 days.

I still get mad at myself for being angry with Grace over the bathroom issues, for telling her to stop drinking so much. And I'm so disappointed in myself for breaking down in front of her in the doctor's office. I wonder, does that feeling ever go away?


  1. Hi Pam, Glad you are no longer a lurker! The guilty feeling will fade over time. You have to remember not to be hard on yourself - you didn't know!
    When my son was born, he was tested by the TEDDY study at the hospital and the results came back that he tested with a higher risk for type1. Since we have no family history of it PLUS I was breastfeeding & making my own food etc, I opted to not participate in the study plus I completely buried any thoughts of type 1. When Addison was drinking a lot and soaking diapers and acting lethargic I didn't even think diabetes. It took a week to feel like something was wrong and that is when we took him in and he was diagnosed and I was blindsided!

    It has been 2 years now and it does get easier. There are still hard days, sad days & angry days but overall D is such a part of our life that it doesn't shake us up quite so often. Hang in there!

  2. Pam -
    Thank you for sharing (and showing me) what a parent of a type 1 child goes through.

    Don't feel guilty and don't get angry with yourself- just continue to keep doing the best you can.
    And please, keep blogging!
    Kelly K

  3. Thank you for sharing your story Pam. It's important for all of us to hear and not feel so alone. I get the Mommy guilt, it looms large here even in this house. But I do know that you are a strong, strong woman who raises Grace with strength and courage and bravado. I think in the back of our minds, us D-Mommies always have the 'what-ifs' we had caught it sooner, what if I had only... but that's a hard place in which to live. Let it just sit there in the back of your mind and soon enough, maybe enough other stuff will come in that it will just slip out the back door. That's what I am hoping, anyway. Thanks again for sharing your journey with Grace.

  4. Wow, Pam your words brought tears to my eyes. As someone who loves you and your family so much, I can feel all of your pain.

    You're a great mom and Grace is so blessed to have diabetes with you. You can change the world.