Surviving the Diagnosis

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On Monday, September 14, 2009, I noticed my 14-month-old son Nate had been thirsty all day.  He cried a little bit more than usual and stood at the fridge, pointing until I got him a drink.  I thought he was pretty darn smart.  He was only a baby and yet he knew what he wanted and where to get it.

That night he cried on and off during the night which was very unusual for him.  He seemed thirsty again so my husband, Jim, gave him a sippy cup of water.  Nate stopped crying, drank the water and went back to sleep.  When he woke up again he was soaked- diapers, jammies, and sheets.  Everything was soaked and he was still thirsty.  More water and more soaking, more water, more soaking . . .

By Wednesday I was searching the internet for “excessive thirst in toddlers,” and only one thing came up. Diabetes. But my mind would not allow me to go there. I put it in the back of my head and continued to monitor the situation.

The next day Nate went to his once-a-week children’s day out program. When I arrived to pick him up at 2:00 pm, I noticed that they had changed his clothes.  When I asked why the teacher told me he seemed excessively thirsty and had soaked through his diaper.  It hit me like a ton of bricks.  Diabetes.  Yet somehow, even though I knew, I could not believe it. I called our pediatrician and made an appointment for that afternoon.  I left my two older daughters with a babysitter, rushed Nate to the doctor, and insisted that they check him for diabetes.  A nurse tested his blood glucose level, turned around, and walked out without a word.

When the doctor came back in, I wanted to run away.  I understood the look in her eyes and I wanted to grab Nate and run away from the reality that was about to come.

Nate was diagnosed with type 1 diabetes on September 17, 2009, and admitted to the hospital right away.

We spent the next four days in the hospital while the doctors stabilized Nate’s blood sugar, and Jim and I learned how to care for our son.  Somehow we managed to convince the doctors and nurses that we knew what we were doing, and that Nate we were ready to take Nate home.  Looking back I now know we didn’t have a clue what we were doing.  We were moving on automatic, what I call ‘survival mode,’ and we stayed that way for a quite a while.

We plugged along as a family through our new normal, but the truth is that I was barely surviving. I pulled away from my friends and family. No one understood what I was going through and I had no interest in being around my friends, which made me feel even more lonely and isolated.  I skipped play dates, birthday parties and my monthly book club.  I wasn’t ready to hear about other people’s problems when my feelings of sadness, anger and frustration about Nate’s diagnosis were overwhelming me.  I cried a lot. I never knew when tears were going to hit me, but they hit me often.  There were times I would find myself sobbing in the shower, in my car at a stop light, and even silently while doing a blood sugar check in the middle of the night. I never wanted Nate or my girls to see me cry so I did my best to hide my tears from them at all times.

It took a long time but my feelings of sadness and anger have subsided. Parenting a toddler with type 1 diabetes is always going to be challenging and frustrating.  There is no easy way to wrangle a two-year-old boy away from his beloved train tracks, Matchbox cars, Handy Manny tool set, or catch him during a heated game of chase with his two sisters for blood sugar checks.  But we do it 8-10 times a day.  Every day.  It hasn’t gotten any easier to wake up at midnight and 3 am to check Nate’s blood sugar each and every night.  We weigh and measure Nate’s food so we can accurately measure how much insulin he will get for each meal.  And the biggest challenge, frustration and fear is knowing that there is such a fine line between the amount of insulin that keeps Nate alive, and the amount of insulin that could potentially kill him.  Dealing with this requires a tremendous amount of support, and I’ve been lucky to find it. Thanks to my friends, my family and the wonderful Diabetes Online Community (DOC) I know that I am not alone in this journey.

After going through many stages of grief I have come out the other side with a new outlook on Nate’s diagnosis.  I can say that although managing type 1 diabetes is not easy, we are living a happy and joyful life.  We are no longer just surviving

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17 Comments on "Surviving the Diagnosis"

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Alison
My 14 month old stayed home from school again today. I just felt something was off, that motherly instinct, so I googled his symptoms and this article came up. We brought him to the emergency room and his blood sugar was 733. Thank you for writing this. We now know he has type 1 diabetes after several pokes, blood tests, X-rays, etc. I’m scared and sad and mad and so many other emotions. But I’m so glad we came in and I’m so glad I read this so it confirmed my instincts enough to bring him. Now to figure out… Read more »
Louise
Hi Laura Thank you so much for your words – my daughter is 18 months old and was diagnosed nearly 4 weeks ago. I feel like you are saying exactly how I am feeling.  I feel like to everyone else I need to say we are doing well, and we are strong, and we will figure this out, but inside my heart brakes every day for my daughter.  I feel so guilty that I cannot take this away from her and make her better, and I feel like I have failed her by not protecting her from this – even… Read more »
MaryJo
This is exactly how my parents describe finding out their child had type 1 diabetes like they did with me back in 1992. I’m now 24 without complications and working as a pediatric nurse on a GI/Endocrine floor. Every single time I have a newly diagnosed kid I have the same emotional reaction. Sadness. But when I see a smile on a child’s face when their blood sugar gets back in target and they’re getting back to themselves I am overcome with joy. To be able to help the kids and families through an extremely tough time is a gift.… Read more »
Starr
Your post says it all. My son was diagnosed a month before his 8th birthday, in June 2010.  While I can’t imagine handling testing and so forth in his toddler years, we’ve faced a different set of challenges adjusting to a change in a long-established routine.  What strikes me most, however, is reading your bio that your daughter has Crohn’s Disease.  My son was diagnosed with Ulcerative Colitis (similar to Crohn’s but different area of intestine) 18 mos. before his t-1 dx.  I also have a friend who among 7 siblings has one dx w t-1 as an adult and 2… Read more »
nicole

What a wonderful post, and what a wonderful job you and your family are doing living each and every day to the fullest with support and love.

Debbie Bern

You are an amazing Mother and I think of you so often.

Joanna

Dear Laura, YOU are change!  The world is hearing you.  Most important our Lord is too, one day at a time.  Sometimes one minute at a time!  Knowledge is power, support is strenghth and you are doing it all girl!  You have a beautiful family, we all love you and are soooooo soooooo proud of you.  Keep it going!

Deanna

Oh Laura! I began reading this and the tears started rolling. I didn’t realize the grief was still so fresh. But I know I’m getting there, slow but sure. Your story could be mine and I’m encouraged to know that one day we will experience life fully again.

Meri

I think your story hits the heart of all of our stories Laura.  We are the same.  I know many will read this who are still in the mourning phase of diagnosis.  Seeing testimony that they will in fact come out on the other side is a blessing.  We all need to know that we are not alone…beautfiul story sweet Laura!

Lorraine

Such a heartfelt retell, Laura. I walked with you every step of the way, reliving our our grief recovery process. I’m glad you are emerging on the other end. Thanks for sharing – gorgeous pics!

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