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This is a guest post by Rachel who writes a great blog about parenting a young child with type 1 diabetes.  I enjoy these guest posts because they typically bring a different perspective and insights that I may not experience or know about.  I want to thank Rachel for sharing her story and contributing to the diabetes online community.

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If you peeked into our house, you would see what looks to be a normal family with a normal life. Unfortunately, our life changed forever a little over 4 years ago. Tristan was diagnosed with type 1 diabetes in March of 2005. He was 16 months. He is now 5 years old. I was asked by Tony to share what it’s like to parent a child with diabetes and how we manage the day to day routines that other parents just execute without really thinking about it.

At school

Entering Tristan in school was a joyful moment. Our baby was growing up. J It also brought on a lot of stress and worries. Most parents register their child, maybe meet the teacher once before the school year starts, drop their kids off on the first day and life is normal. They go to work and they come home. Pretty straight forward. For us, registering Tristan meant, 504 plan, meeting with the school principal, nurses, psychologist, parent coordinator and other people that I can’t even remember at this time. For us it meant educating people to make sure that they are aware of the potential danger, that they stay alerts to the signs and that they can react in any given situation. Another issue that came up this year is emergency evacuation of the school. The problem that came up was that Tristan can’t just be put on a bus, driven to another school without qualified personnel with him. After much stress and frustration, the conclusion was that Tristan would be with the nurse at all times. She would be in the bus with him and remain with him until either I or my husband could come and get him.

When at school, Tristan gets his blood sugar checked between 11 and 13 times per day. Before going to PE, he needs to have his blood sugar checked and most of the time, he needs to have a snack to tide him over. Unfortunately, he does at time have to miss things at school because of his blood sugar. He misses class time, PE, music etc. It is very frustrating for him and it makes him sad. I often get the comments from the nurses “I don’t know how you do it”. We don’t have a choice

At Home

The situation at home is a little different. Because there’s only him and his brother, we are able to pay closer attention to him. Therefore, at home, he usually only gets his blood sugar checked 8-9 times per day. Of course, we check him before any meal, usually 2 hours after meals, before we go to bed and around 3:30am. This does not include all the checks that we have to do it based on his behavior. When diabetes is not a factor, when a child has a temper tantrum or a meltdown, that’s what it is. Period. With Tristan, we never know if it’s Tristan acting up or if we are dealing with the big D Monster. So before any discipline can be done, we need to check his blood sugar to know what we are dealing with and handling the situation appropriately.

Tristan has been wearing an insulin pump for a little over 1 year. It does make life easier for us. It affords us more freedom when it comes to meals and snacks. The routine doesn’t have to be so strict. There is also less restriction on intake of food than when he was on shots. When he was on injections, we really had to think twice before allowing him a snack because it meant additional injections and he was already getting a minimum of 4 per day.

With the pump, he only has to deal with needles every 2 days when we change his site. The problem with the pump is if the site doesn’t go in properly. We then have to deal with changing the site again and the possibility of ketones.

Sick days are always very difficult. A simple cold for Tristan is not just a simple cold. Most of the time, it affects his blood sugar which in turn, has the potential of creating ketones. At that point, we have to deal with the cold, his blood sugar being too high or too low and ketones. It means extra insulin or extra food (trying to get a child whose not feeling well to eat/drink something is not a walk in the park), it means blood sugar checks every 1 or 2 hours and it means checking his urine every time he goes to the bathroom. Sick day are stressful and unfortunately, we can’t protect him from catching a common bug.

This week Tristan just started t-ball. Again, something that should be fun for us means stress and planning. We don’t know how his blood sugar will react to the excitement and physical activity. It’s another situation where we have to do trial and error to find the exact course of action that we need to take before, during and after to ensure that we maintain his blood sugar level where it’s suppose to be. It means pulling Tristan out when he’s having fun to figure out what’s going on. It also means having him miss out of some of the fun because he either needs to drink and/or eat something. But most important, it means that once again, Tristan is different. Let’s not forget the looks from other adults/parents that we have to deal with.

All of these things, as much as they suck, have become routine. It’s our life now. What is harder to get a handle on is the emotional aspect of it. Tristan is at an age where he feels different. He knows that he’s not the same and that we need to take extra precaution. The other night, after having tried his site in a different location, he was crying and telling me how much he hated being diabetic and how he wished that he wasn’t. When he was 2 years old after an injection that had hurt him, he looked at me and yelled “mommy you hurt me”. It’s hard. Those are scars that will never go away. I can learn to count carbs and give injections. I can learn what to do in an emergency situation. I can do all that because I know that I don’t have a choice. I need to perform these actions to keep him alive.

However, I can’t learn how to deal with the emotional aspect of the disease. My son has a disease that could possibility kill him. My son has a disease that he hates. My son has to deal with injections that hurt him. My son feels different from other kids his age. And there’s nothing that I can do about it!

Diabetes is a disease that not only affects the patient, it affects the whole family. We constantly have to find the right balance to deal with Tristan as a person, Tristan with diabetes and my other 2 year old son who does not have diabetes. I feel like in March 2005, I was also diagnosed with type 1 diabetes, right along with Tristan.

On top of all the stress of dealing with diabetes, we also have the concern of Connor, our 2 year old getting it. Because Connor has a sibling with type 1 diabetes, he has 5 percent chance of getting it. I know that you are thinking, 5%, that’s not much, it’s nothing. You right, in the big scheme of things, 5% is nothing. Tristan had less than 3% chance of getting diabetes! He got it.

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If you are interested in providing a guest post, please contact me for more information.