Some nights are just harder....

Some nights are just harder….

Thursday night was site change night.  For those that don’t know how the pump works I will briefly explain a bit:

There is a cartridge that is filled with insulin.  This is inserted into the pump.  A small tube leading from the cartridge/pump is then connected to a part of Cole’s body (we mainly use his thighs).  This is inserted using an infusion set.  Infusion sets have removable introducer needle that comes out once the flexible tube is left under his skin.  This tube is how Cole gets his insulin.  It is stuck on his leg with an adhesive and needs to be replaced about every 3 days (sometimes more often if the insulin doesn’t appear to be working as well or if the adhesive is coming off).  This is what we call Cole’s site. 

So anyway, site change nights are not fun.  Cole is now almost 2 ½ years old.  He’s expressing his feelings a lot better now which is great in most ways but not when it comes to site changes.  It takes 2 people to do a site change.  One person to place the infusion set on his leg and insert it and another to hold him down (thankfully my mom helped me Thursday night since Robert has been gone all weekend).  Cole now comes to his room and sees his pump and the infusion set and starts  crying saying things such as “no please it hurts me” “I don’t like it” “help me mama”. 

Being that I am the person that is here to protect him, site changes not only hurt Cole but they hurt me.  All I can do is hold him down and give him kisses on his forehead and tell him it’s going to be okay and that he’s a big boy.  I try to distract him with promises of a reese’s peanut butter cup (hell yeah I give the kid candy, he deserves a treat).  As the tears roll down his eyes it’s hard for me to know if I am doing the right thing with the pump.  The pump has a bit bigger stick then regular injections, but it’s only once every 3 days as opposed to a minimum of 6 injections a day.  Plus with the pump he can eat more freely then with injections.  I really feel that minus the pain of the site change, the pump is the best thing for Cole.

I know I am helping him live but it’s hard to cause him pain.  What’s harder is this will never go away.  NEVER!!!  It’s not like when he had hand foot and mouth and I could tell him “I know it itches and hurts but it will get better”.  With diabetes it’s more like “I know you don’t like site changes, but deal with it kiddo you have a whole lifetime of it, that’s right it will never get better.”  He’s already tired of it and it’s only been a little over a year, more than half of his life.  He doesn't know any better, but he does know he doesn’t like it.  Trust me he tells me all the time. 

I pray every day for a cure.  When he was first diagnosed it seemed so promising, the hope of a cure.  As time has gone on and the more research I do, I don’t feel there will be a cure. It seems there has always been that hope/promise of a cure it’s only 5-10 years away (too bad it’s only been 5-10 years away for the past 30 years).  We recently went to the JDRF Type 1 Nation Conference.  I was hoping for good news and a boost in my hope that a cure would be found while Cole was still a child.  Just a little hope that maybe part of Cole’s childhood could be spent as a normal kid, but I walked away deflated.

I do have hope that there were be more things that come out to maybe make controlling Cole’s diabetes easier…. but a cure…. Well I don’t think that’s going to happen anytime soon. 

There are so many things I would have never thought about in my life as depressing until we had to deal with diabetes.  Such things as:

1.  Cole not being able to just jump in a pool because he first  has to come see his mom and get his pump taken off so it can be placed in his water proof pouch then placed in a cooler to keep his insulin good.  Oh then he has to wait for me to plug his site so that he does not get an infection.  This all seems like small stuff but to a kid that just wants to play in the water, waiting for all of this to happen on top of putting sunscreen on takes forever

2.  Poking Cole’s finger so many times during the day.  He gets so tired of it.  Lately sometimes he even cries.  I don’t think he’s crying because it hurts, I think he’s crying because he just wants to play and be normal.

3.  Poking Cole’s finger before meals.  Trust me the kid doesn’t want to take the time to check his finger before he eats, he just wants to eat.

4.  Making him stand still while I enter in his BG and carb amount.  The poor kid just wants to play and not stand still.

5.  Counting carbs.  I hate counting carbs, trying to guess the amount Cole ate if we are out to eat and then trying to guess the carbs.  Such a pain.

6.  Going into the gas station and having Cole pick out candy and me having to say, “buddy you can’t have that.”  We always got candy on road trips when I was a kid.  It’s a small thing but kids love it and telling him no makes me sad.  I know I can give it to him, but on a road trip where he is just sitting for long periods of time, his bg tends to be high.  Candy will not help that.

7.  Ice Cream --- enough said

8.  Making sure he doesn’t play to hard and rip off his site or drop his pump.

9.  Having to wake my child up multiple times in the night to poke his finger and make him drink juice

10.  Oh and juice that’s another thing.  I hate not being able to give my kid juice when he wants it.  Poor Cole, he can drink it if he wants high blood sugar.

11.  Waking up and realizing that Cole’s blood sugar has been over 300 for hours and thinking good job mama (aka Cole’s pancreas) you suck at this job… wonder what organ you are ruining now

The list goes on and on but I am tired and I have to wake up in a couple hours to check Cole’s bg.

I will go to bed tonight and pray yet again for a cure.  I will hold out hope no matter how small that hope may be right now.  Here’s to hoping that Cole can live a more normal childhood, that he won’t have to deal with the pain of site and senor changes, that he can eat without checking his BG beforehand, that he can go out someplace without having to carry his “survival bag,” that he can have a dog that’s just a pet and not another tool to survive, that he won’t have a pump stuck to him at all times, that he can eat ice cream whenever he wants….

And here’s to hoping that tomorrow’s site and sensor change can happen with fewer tears and less pleas for help.