Author: Leslie

The phrase “It could be worse,” in reference to having Type 1 diabetes should only be uttered by people actually living with the disease.

When my son was first diagnosed with Type 1 diabetes almost two years ago, I heard that ‘it could be worse’ from many, many people. Sometimes I would smile, sometimes I would agree. Other days, when I didn’t want to hear it, I replied, “Yeah it could be you.” Forgive me for that, I was in pain from the diagnosis. Regardless of what my response was, it was a phrase that was said to me on more than one occasion, and if I truly think about it, it was said to me more on than 20 occasions.

Time went on, the diagnosis became old news and we were successfully living with Type 1 diabetes. The ‘it could be worse’ comments stopped from outsiders, but they started to come from me. People would tell me that they didn’t know how I was doing it, raising a 4 year old with Type 1 diabetes, and I would answer, “It could be worse.” I meant it. I didn’t want a pity party for raising my son. I was happy. He was happy. We were doing ok, and we didn’t need people to feel sorry for us. I answered, “It could be worse,” to put their mind at ease that we were doing fine.

I know in my heart as a parent that it actually could be worse, but now as I have evolved and grown again with this disease, I don’t say that phrase anymore. In fact, I am ashamed that I ever actually said it. Not because I don’t think it some time, but because I am not the one living with Type 1 diabetes, I am just the caretaker. I don’t have the right or authority to say that ‘it could be worse’ in reference to the disease that my son is living with. Only he can make that call.

I started thinking about this phrase this weekend at camp. There were many parents there with older children. They were diagnosed older than my son, so the level of hands-on care that they provide is different. Some had not given a shot to their child or themselves. I say themselves because before I do anything to my son I do it to myself including give a shot to myself, do a site change on myself, check my own sugar, and my son has done all these things to me too. The level of hands-on care is quite different with younger children. Ok, getting back to ‘it could be worse,’ many of these parents used this phrase.

They feel their life has returned to normal since diagnosis, and they claimed that living with diabetes wasn’t that bad and it could be worse…FOR THEM (added by me). Because we were in a parent session there were no children around, but I wanted to scream to them, “It could be worse for who? You? Or you child?” Was anyone asking their children how they felt pricking their finger 10 times a day? Was anyone asking their child how they felt giving themselves shots or changing their own pump site? Was anyone asking their children if anyone laughs at them at school now that they are different?

Now, let me say this, I am not judging these parents. Everyone is different. And maybe their lives haven’t changed that much. Maybe they’re in denial. But I really wonder when my son, or these kids, are checking their sugar, changing their pump sites, weighing their food, counting their carbs, treating their lows, and feeling their highs if they truly believe that it could be worse. Maybe? Maybe not? But it’s not for me to say.

Living with Type 1 diabetes is difficult. It is a 24/7/365/lifetime job that no one ever applied for, and you’re not allowed to quit no matter how much you want to. One key to avoiding burnout with the daunting task of managing Type 1 is to make connections with others on your same path. Camp Nejeda is one way to find those connections.

On the website www.campnejeda.org, they describe the camp this way:
At Camp Nejeda youth with diabetes are given the opportunity to live, if only for one or two weeks, in a world where having diabetes is the norm; where there is no need to explain blood sugar testing, finger pricks, insulin injections, ketones, “lows” (insulin reactions), boluses or ‘carb’ counting because everyone here already understands. At Camp Nejeda children with diabetes are free to be just children. This ‘normalizing’ of their condition combines with both formal and informal educational moments to promote good diabetes management and healthy, active living.

On this website www.type1demystified.org, I like to describe camp this way:
Heaven on Earth.

Sure at Camp Nejeda there are bugs, old cabins, community shower cabins, camp food, exhausting days, and everything else you may remember about camp from your younger days. But Camp Nejeda is so much more. At Camp Nejeda there are many, many people just like my son. They are all successfully living with Type 1 diabetes. Some have been living with it for only a month, yet others have had Type 1 diabetes for over 37 years. Camp Nejeda gets under your skin in the best possible way.

From the minute you drive up that long driveway into camp you know somehow you are home. Although this was only our second year at Family Camp, I know Camp Nejeda is the closest I am going to get to Heaven on Earth for my son while he is living with Type 1 diabetes.

At Camp Nejeda there are no stares when we check his blood sugar. No one bats an eye when someone gets a little feisty when their number is too high. Everywhere I turn there are blue counselor back packs that I know are full of supplies for my son if he needs any on the spot. There is no judgment. There is no explaining diabetes and the difference between Type 1 and Type 2. There is no one telling my son he should or should not eat something because of his diabetes. There is no difference between my son and all the other campers and counselors. Every one is the same, and everyone is accepted.

There is love. There is support. There is friendship. There is heart. There are connections that are made between the young and the old because of the common bond of Type 1 diabetes. Connections that can’t be found anywhere else. Camp Nejeda is the family that I never knew I had. My son, at only 6, feels the strength of Camp Nejeda. I want a cure for diabetes, and I want it now, but until then, I’ll take Camp Nejeda for my son. I am proud to be part of the Camp Nejeda family.

Winter, spring, summer or fall
All you got to do is call
James Taylor

People with Type 1 diabetes and caregivers of children with Type 1 diabetes should not have to go into debt to pay for life sustaining supplies. People should never have to chose between their health or good credit. That’s appalling.

Fortunately, let me say that again louder FORTUNATELY, my husband works for a wonderful company that allows him to be included in the corporate health insurance plan to help us pay for our son’s diabetes supplies. We do pay co-pays for our insulin, glucagon and doctor visits, but that is a drop in the bucket when you look at all the other supplies that we need to keep on hand to keep our son alive. The rest of our supplies: pump, cartridges, pump sites, meters, blood glucose strips, ketone strips, lancets and batteries, would be huge amounts of money if they we not covered under our insurance plan. We are the lucky ones.

I know many, many people with one or two children with Type 1 diabetes that do not have health insurance. They are all hard working people with at least one of the adults in the home holding down 3 different jobs. Unfortunately they are all jobs that do not provide health insurance, and barely enough money to even cover the supplies that they need to keep not one but both of their children alive. This is where the debt and the hard decision making comes in.

Diabetes supplies can be purchased with credit cards. If you know you child is down to their last bottle of test strips, you absolutely know you need more for them to stay healthy, it is very easy (or the hardest thing in the world, depending on how you look at it) to charge those strips. In the US, test strips are on average $1.00 a strip. So a family paying out of pocket for strips is paying a minimum of $10.00 a day just to test their child’s sugar to keep them alive.

You may be saying to yourself, well then test less. People with Type 1 cannot test less, especially children. You are risking acute complications such as DKA, coma or seizure if you try to cut back on testing glucose. Quite simply think of it as bandaids or tissues. You wouldn’t tell your child to bleed out if you had no more bandaids left, and you wouldn’t let your child’s nose run for days on end. You’d eventually get a bandaid or a tissue, even if they cost $1.00 each.

Let’s get back to the money. So a family with 2 children each having to test 10 times everyday is spending in essence $20.00 a day on test strips. That is over $600.00 a month for test strips alone. That is not even touching pump supplies, lancets, insulin, ketone strips, and doctor visits. There are some towns in NJ that you can rent a one bedroom studio for $600.00.

Here in lies the root of the problem, these families along with caring for children with Type 1 diabetes are still just caring for children. So other stuff has to be paid for too like school supplies, school treats, school clothes, afterschool activities, birthday parties, etc. etc. etc. No one, not even someone with a heart like the Grinch, would expect a mother to tell her child, “Sorry honey, you can’t have a birthday party, I have to pay for diabetes supplies.” Not going to happen, and if anyone really thinks a mother should do that should never become a mother themselves, they don’t have the heart for it.

I can get political with this but I won’t. Bottom line, no one should have to make a choice between a child’s health and credit card debt. We need help with this and we need it now.