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 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

 

Laura Houston and her husband Jim and have been married for 6 years and have 3 wonderful children.  Their son Nate was diagnosed with type 1 diabetes in September of 2009 and their daughter, Sophie was diagnosed with Crohn’s disease in June of 2010.  Laura blogs about both at Houston We Have A Problem. She is active in her local Juvenile Diabetes Research Foundation chapter, enjoys reaching out to local families with children newly diagnosed with type 1 diabetes and loves connecting with other parents living with T1D and Crohn’s through her blog, on Facebook and on Twitter.  You can find Laura on Facebook at www.facebook.com/lauraleigh73 and on Twitter at www.twitter.com/thehoustonfive.

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Comments (16)

  1. Jen at

    Excellent article Laura! It is so important for anyone who has a newly diagnosed child to know that there is support out there and it is possible to do more than just survive. You are an inspiration!

  2. Wendy at

    Great post, Laura!  I love your beautiful family!  I admire your ability to choose joy, even when the going gets tough!
    You began blogging shortly after Nate’s dx.  It feels like I’ve known you forever now! The DOC is a wonderful blessing and I’m honored to share this journey with so many amazing people like yourself!
     

  3. Vegfaery at

    My partner has Type 1 diabetes and the long term effects scare the pants off me.  I try to enjoy every day with her, but the side effects linger at the edge of my mind all the time.

  4. Shannon at

    Laura this was a beautiful post and while each of our experiances are different you nailed it to a t. Thank you for the look into what you experianced and the words you used to express it. So many of us go through these same things and you have given it a voice.  I am honored to call you my friend and I have to let you kow you, Super Nate and the online community has been one of the main reasons I have survived this year. Thank you so much

  5. Misty at

    Laura, this article really hit home for me.  I felt like you were speaking the words right out of my head!  I am also so grateful for the support that I have found in the DOC.  Beautiful article, beautiful family!

  6. Caroline L at

    Thank you for this lovely post.  My 6yr old son was diagnosed in December 2009.  You describe my feelings so clearly!  It brought me to tears. 

  7. Penny at

    Wonderful story about a wonderful family! YOu are surviving and thriving my dear friend :0)

  8. 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!

  9. Meri at

    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!

  10. Deanna at

    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.

  11. Joanna at

    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!

  12. Debbie Bern at

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

  13. nicole at

    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.

  14. Starr at

    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 with UC.  I’m finding no research on a connection between the two, other than being auto-immune disorders.  We have no history of either t-1 or UC in our family, though my husband’s uncle has Crohn’s.  I wonder if you have found any literature on a link between these diseases.

  15. MaryJo at

    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. It’s emotionally draining every time but 100% worth it. It’s tough but there are so many great people and places to get support and strength.

  16. Louise at

    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 though deep down I know there is nothing I could have done.
    We are living an emotional rollercoaster at the moment (I am also pregnant with baby #2) and I hope that it will get a little easier over time, but it really helps reading your words and hearing about your beautiful family.
    Thank you for taking the time to write this post.  It helps me feel like I am not alone in feeling like this.

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