Will the fear go away?

As a mom of a boy living with Type 1 diabetes there are times when I fear the most for his safety and life. Funny enough they are probably not when you think. They are not when he’s riding his bike, or at school, or even when he’s trying to be a superhero and fly.

It is when he is sleeping. It is when he is quiet. The dark of night and the silence of quiet time fill of pit of fear in my stomach that can only be explained by using the word terror.

When my son sleeps I already check his sugar one or two times a night. Usually I check around 2:00 am and sometimes at 5:00am depending on the 2:00am number.  Then I am usually good until his usual wake up time of 7:00am. It is on the weekends, though, when he is snuggled up tight with his dad and his body wants to sleep late that cause me the most anxiety.

I don’t know if my son is sleeping late because he is tired and cozy and loving every minute of his rest, or if he has dropped so low that his body is shutting down and he is unable to wake up even if he tried. I know I can go in there and test his sugar and sometimes I do just that. Sometimes I can work myself up into such a fear that I have no choice but to go in and check. That usually wakes him up and then I feel bad. I feel bad for disturbing him, I feel bad for overreacting, I feel bad he has to live with this awful disease.

Wow, what a way to start a morning.

Then there are the other times when my son is quietly watching TV in the downstairs room. While I relish in the quiet for a few minutes, after a moment or two I start to get nervous. I’ll nonchalantly call downstairs, “Buddy, whatcha watching?” No answer. “Hey buddy, whatcha doin’?” No answer. Until finally I am screaming for the whole neighborhood to hear, “Answer me!” and then I finally get, “I’m watching Johnny Test.”

Unfair, yes, to both of us. I should be happy when my extremely active and creative six year old wants some rare quiet time. I should be able to be at peace when he is calmly watching TV like most kids. Yet, that is one other thing that Type 1 diabetes has robbed me of, peace in the quiet.

Unfair to my little boy, because what six year old doesn’t want to sleep late and watch TV without his mom coming in and pricking his finger or screaming for him to answer.

Sleeping late and quiet time should not bring up a level of terror in me equivalent to a house fire or home invasion, but unfortunately Type 1 diabetes has done that to me. I fear times in my home that most people find the most relaxing.

I already know the answer to my original question. Will the fear go away? Not as long as Type 1 diabetes is still around.

Leslie posted at 2009-10-22 Category: Uncategorized

8 Responses Leave a comment

  1. #8Mamabear @ 2010-1-14 12:22

    Unfortunately the fear will not go away until there is a cure. My fear intensified as my son grew older, and he took over his care. He is not as meticulous as I was, and I am always worried about getting “that phone call”, saying that he is in the hospital.

  2. #7Shamae @ 2009-10-27 19:37

    Hi Leslie–

    I will keep my eyes posted for it. I don’t know how quickly it will be published but when I see it, I will let you know. What did you write again?

  3. #6Shamae @ 2009-10-26 18:39

    Hi there–

    You left a comment on my blog about the letter to the editor in my local paper. Thank you. I appreciate that. As for how to view it, there is an electronic paper but it costs to view it. If you want, let me know your name and I will just watch for it in my paper and I can mail you, via snail mail, the entire paper when it shows up. You can email me privately if you would like. I will have to add you to my google reader so I can follow your blog. Take care. 🙂

  4. #5Mel Parnell @ 2009-10-24 05:10

    As I read tears have welled in my eyes as it is exactly what you have described as to what I am feeling at the moment. The whole sleep thing is so terrifying to me and when I wake in the morning I start to think until I finally get up and check up. I also hate waking him and feel like a mean mother.
    What do you do to deal with it?? My DS3 is nearly 2 dx’d 6 mths ago, I get so wqorried he might not make it to his next birthday, I want to let him be a 2 yr old but it really hard to do that. I just want this to go away….. it’s all too hard

  5. #4Leslie @ 2009-10-22 19:45

    Thanks Naomi. The CGMSs are a really good tool, and in time we may decide to get one. We are always looking for new technology to help us make our son’s life just that much easier in terms of diabetes care. Thanks so much for reading!

  6. #3Leslie @ 2009-10-22 19:44

    Thank you Sandra. My son was 4 when he was dx’d and he is almost 6 1/2. We are on the pump, you will love it. We do follow Faustman labs, she’s the only one I believe in right now! Thanks so much for reading.

  7. #2Naomi @ 2009-10-22 18:37

    The Continuous Glucose Monitor may help alleviate some of your fear. Technology is changing rapidly for the better.

  8. #1Sandra Staple @ 2009-10-22 18:20

    I hear you on that one. How old was your little one when diagnosed? Moira always posts these to her Facebook, they’re very good; insightful to those that don’t have little ones with Type 1, and all too familiar to those of us who do. My little girl is 2 and a half and managing her diabetes is a nightmare. We have 1 month to go until Pump Start, but it’s been really hard on the needle therapy. I check Chloe a lot at night too. Have you been following the Faustman lab at all? Their results seem very promising, I’m hoping in another 8 years they might actually have a real cure, but there’s no sure thing it will. We can just keep our fingers crossed and keep on educating our friends about this disease in the meantime!