I am the mother of a type 1 diabetic.

There are many misconceptions about diabetes that need to be fixed and set straight. What I'm doing with this post is to give you an inside look of what it's like to be a mother of a type 1 diabetic. While this may not change those misconceptions, I feel it's my small contribution to help shift the misconceptions into the truth avenue.

I am the mother of a type 1 diabetic. As a mother of a type 1 diabetic I have all the fears and worries that you do. I worry that my son will not grow up to be a responsible adult. I worry that he will have his heart broken more times than one can count. I worry about his grades in school as he gets older. I worry about "strangers" and hope he has the right knowledge about them. I worry that he is growing up too fast for my liking. I worry about the values and morals that we are trying to instill in him and if he's actually catching on and learning in the process.

But as a mother of a type 1 diabetic I have a whole new column of worries added to this list. I worry he will not wake up the next morning, in fact this is my biggest worry. I worry that during the night I will not catch a low, and my son will be taken from me. I worry that at any point in his day diabetes will not play fair, and reek even more havoc on his little body. I worry that he feels like crap all the time because of diabetes. I worry about complications that can occur. I worry that his lifespan has been cut short of this god awful disease. I worry that when I kiss him goodbye and send him to school that something will happen. I worry that he will not grow up learning to be responsible and manage his diabetes properly and that something will happen to him when he's out of my care. I face the mortality of my son daily. I know it sounds horrible to say that but it's the plain, honest, raw truth. We almost lost him 3 times so far on this journey. Those three incidents are not something I would wish on my worst enemy to experience. As a parent you shouldn't HAVE to face the mortality of your child. But with diabetes you do.

I am the mother of a type 1 diabetic and I worry that as he grows up his friends may not accept him for his diabetes. I worry that those broken hearts he will experience will be caused because of diabetes. I worry that he will be looked at differently, and treated differently because of his diabetes.

I am the mother of a type 1 diabetic, and I am tired. I barely sleep and more often than not am fueled alone by caffeine. Why because my sleep even when it's not time for a scheduled check is scattered. I have trouble sleeping and many times I wake up out of a dead sleep to run and check him because it feels that something is not quite right. The feeling of running upstairs in the middle of the night with one eye open and discovering he is in fact in the low 50s sinks your heart. It's like fighting time to get the carbs in him to bring him back up. Thankfully he instinctively drinks a juice box without waking, but there were many times when he was low I had to fight to get him to take any form of carbs and reverted holding his mouth open to get icing in on his gums, or a pixie stick, why because if I didn't I'd lose him. We no longer look at juice, icing, and candy as what they really are. To us they are life saving medicine.

I am the mother of a type 1 diabetic, and really don't appreciate being told I caused my son's diabetes. I've only heard it on a few occasions but the sting of that still doesn't get any easier. I don't appreciate hearing the misconceptions about type 1 diabetes either, or that he has the "Bad" type of diabetes. And I'm sorry but I absolutely despise the term "Brittle diabetic". To me I picture a frail individual who will break in two if a swift breeze blew on them. That's not what I see when I look at my son. He is a healthy boy that just happens to live with a chronic illness. On a good day I can handle the occasional ignorance, but catch me on a day that I was up almost every hour fighting highs or lows during the night to ensure he wakes up in range to go to school, and you may find me to be less than friendly, especially before caffeine.

I am a mother of a type 1 diabetic, and I fight daily. I fight to keep my son alive, even when things are going well I'm still fighting, monitoring making sure no highs or lows or dreaded ketones sneak in there. I fight the insurance company to get the valuable tools I feel my son needs to help make our life easier. I fight to keep him safe at school. I hate to say it but I fight his dad to make sure he takes the necessary steps needed to get the education to keep my son alive when he is with him. I shouldn't have to fight him, but Chad and I do, and we do it for the safety of Clifford.

I've just given you a small dose of what it's like to be the mother of a type 1 diabetic. We have so many more happy times and joyful experiences to out weigh the negative, but there are negatives, and unfortunately that is just part of the whole experience with diabetes.

A change in the life ...

So all along our journey in getting to having Clifford on the insulin pump I pictured a jump back to diagnosis time when he first started. And in a sense it is. There is so much new things to learn, tweaking like crazy to his ratios and basals that will go on these first few weeks to a month after starting on insulin. As we move forward and are one day out to going live on insulin, I am not as nervous as I thought I would be. I have become comfortable with the features of the pump that I've been taught. In addition I've gone and done additional training and courses that Medtronic offers online. It's really quite nice how they have their education site set up with practice quizzes at the end. I think their training process on the site has made me much more comfortable with everything.

Now one day before I have to make sure all information is ready to go when we leave bright and early at the crack of dawn tomorrow. This includes a 3 day log or diet sheets of what he is eating to get an idea of how many carbs a day he has. I'm not really sure what the average is for kids his age but Clifford's average has been between 218 and 270 grams a day. And the funny thing about that all is it might seem like a crazy amount. However if you were to review his sheet you'd see he eats a lot of fresh fruit and vegetables. He is following a gluten free diet for the most part and eats really healthy. I kept thinking the doctors and educators may look at his sheets and say "um yeah sure this is what you are feeding him". In addition to these sheets I've made sure to have an updated DMMP (Diabetes Medical Management Plan) printed out, filled out, signed, and ready to go for our endo's signature for the school now that he is on the pump. That is one thing to remember if you are moving forward from MDI's to the pump, make sure your DMMP, is updated to include your pumping information. Tonight I will be reviewing some more information, and uploading his numbers for the past few days that we've been on the pump to carelink, and printing out our charts just to have because you never know. Clifford is excited that today will be his last day at school where he gets injections, it's like a new normal, or life is starting to unfold for him and he's ready. We've already experienced one bad site change due to the site not sticking properly and locking in place. So now he understands that not all the time will it go perfectly.

He got as brave today as to go in and lock his pump on his own. Then I asked what he was doing, he goes "I've seen you do it all the time so I locked it". That boy, he is smart and will pick up on it very easily. However I've told him to give it some time before he starts wanting to press buttons while we're on insulin so we all get used to it and in time he can start bolusing himself too. So tomorrow or Thursday depending on what time we get home. I am hoping to have an updated picture and our pump story about going live on insulin and moving forward to our new normal.

The overnight fear, and the rejoice of the morning

I have to admit that I despise going to sleep, not because I don't like to sleep, I love my sleep (what little I do get of it). But I despise the night time because that is the most uncontrolled environment for diabetes. Every day we battle controlling this beast, but the night time we have limited access. Yeah we set alarms and test at 12 then again at 3am and sometimes again at 5am. But really it's a very scary situation.

During the day I can see Clifford up and playing. I can see the look in his eye's if he goes low. You know that glazed over look that seems to stare right through you? Yeah that one, I can see it, and can catch that low even if he doesn't feel it. I can see if he isn't acting quite like himself and prompt him to test himself, and catch a low that he might have missed as well. At night time however I cannot see either of these things. I can only rely on my testing ability while half asleep with one eye open, and my D mom instincts that wake me out of a dead sleep at an unscheduled time to test.

So every morning when he wakes up and begins to walk down the stairs I say a little prayer to God and thank him for waking my son up this morning. Every morning no matter how tired or grumpy I am is a little brighter for the fact that Clifford woke up, and made it through another night of dealing with diabetes.

I have to say I am jealous of parents that are able to put their kids down to bed at night, give hugs and kisses, tuck them in with their favorite stuffed buddies, and think no further as to what the night might hold for them. Parent's that get awoken from the occasional cries of their child from a nightmare they had. A cry or scream in the middle of the night from Clifford sends chills down my spine that I do not wish for anyone to experience. In those few seconds I seem to gather super human speed and rush up to his room in the matter of seconds for fear that he is dropping low.

So for those of you that have the same fears I do every night as we lay our little ones down to bed, I want to let you know you are not alone and I understand. I understand the joy in your heart when morning comes and you walk into their room and stand for a few seconds to wait to see if they are breathing, and then they do. I understand the fear you go to bed with every night as you tuck them in. I understand the sleep deprivation and being fueled by caffeine alone. You are not alone, I understand!

To those that do not have a child with diabetes, cherish the moments that you put your child down to bed at night and have no worries about what the night holds. These moments are priceless, believe me I would give anything to have them back again.

Pumping!

It's official, Clifford has become a pumper... Of saline right now, but still pumping.... Wednesday he goes live on insulin. It is surprising just how easy the whole process is. We are bolusing at meals and still giving shots, but the pump calculates everything in there, it will show you how much to cover the carbs, and how much correction. We had a 2 hour class to learn to fill the reservoir, place on his infusion set, set basals, and how to bolus.

Right now Clifford's basals are set at 0.3 per hour for a TTD of 7.2 units. This is pretty much how much Lantus he was getting daily. However this may change because with the pump since it's subcutaneous it absorbs better than injections. It may seem like a lot of information in the beginning, but when you are there and actually have to bolus it's really quite simple. The pump did all the work in calculating the dosage for me this morning as well for what I gave him via syringe. It's nice to have another "brain" helping along the way. I think we will enjoy having the pump very much. He is scheduled to have an infusion set change today which Chad is going to do (Yay! to him), then again on Monday, and then on Wednesday (day we go live on insulin)... We are only 4 short days away from putting injections in the past, unless we need them in an emergency situation.

Clifford is slowly adjusting to having it attached to him. He couldn't figure out how to change out of his pants into pjs, but we figured a solution out for that. Then he was concerned about playing with the twins and that they would pull on it. But they left it alone and he got to play like normal. So for now this new norm is good. We'll be even more diligent the first few weeks of pumping insulin and perhaps a bit more sleepy but it will all be worth it.

Disciplining a Type 1 Child

Disciplining any child is never any fun, but it's something that must be done to ensure they know right from wrong and grow up to be a responsible adult. But how do you go about disciplining a child with type 1 diabetes? I write this post because there are so many different things in the mix when you have a child with type 1 diabetes.

When T1 kids experience highs they tend to get a wee bit cranky, give attitude and downright mean. If they are low the only way to explain it is they start exhibiting "annoying" behavior. The trickiness in the disciplining of a T1 kid is that you cannot let them get away with certain behaviors and learn to blame it on a high or low. And we all know kids are smart, once they figure out oh I was high and I got let off the hook, they will try to do it again and again. But on the other hand I have to tell you there is guilt associated with disciplining when they are in fact high or low. I speak from experience in this and will share with you the story of when this occurred.

We were newly diagnosed only 4 months into dx when Clifford started acting no other word for it but "annoying". He was picking on his sisters, not leaving them alone, and not listening when you asked him to stop. I had him test himself and he was 141, definitely no reason to be acting the way he was, but for some reason I just felt as if something wasn't right. We had him come downstairs for his punishment and have him sit on the chair in the living room. I then got down in front of him and starting asking him why he was acting the way he was, and various other questions to which he wasn't answering me. This was the day I learned the "look" in their eyes when they are low which I will never forget. It was if he was staring straight through me and not paying attention to what I was saying at all. I told Chad I just didn't think something was right and started asking Clifford what his name was, where he was at, etc, etc. Well only a brief few seconds later he experienced his first seizure due to a severe hypo event. Well you know the story from here, the ambulance was called and off we went to the hospital, he was then transported via helicopter to Children's hospital and released the next day. I didn't understand then just how fast you could drop from a low, in fact when we tested him for the "annoying" behavior he was 141, apparently this is when it must have been starting to drop. When I think back on this, how beneficial the new technology of a continuous glucose monitor would have been, and this is in part one reasoning for us fighting to get one. We would have seen arrows down which would have told us he was dropping and we could have treated and bypassed the seizure all together.

The point of this story is this is one experience where he was had a low blood sugar, or was on his way to a low blood sugar and got disciplined. Thankfully I was aware that something wasn't right and we had him sitting in the living room with us instead of in his room. So how do you establish how to discipline a T1 kid?

Kids are going to be kids even T1 kids, they will learn to walk the line and figure out early on what they can get away with and what they can't. It is important to establish the rules from the very beginning that must always be followed. Clifford knows that just because he's having a high blood sugar and feels icky it doesn't give him the a free card to be rude to his siblings or parents. I know the high blood sugar is not his fault, and he feels icky when it's going on. But he has learned that if he's a bit high and we're in the process of correcting said high he's to hang out and have some "alone time" so that he can rest until he starts feeling better. This doesn't happen all the time but as much as we can this is the rule. I have learned that once he starts acting annoying it's time to test, and 9 times out of 10 we catch random lows this way. I have also learned that if he is not "low" at the first time of testing from annoying behavior to have him do something not as active like color, or read a book and re-test within 10-15 minutes to see if in fact he is dropping.

It's difficult to find a sure fire way to discipline any child, but with a type 1 kid it becomes even more so. The only advice I can give you in my 2 years on this road so far is to make sure you set up rules ahead of time and that they understand these rules. We keep a rule chart in the house for all the kids. They understand if any of these rules are broken it is straight to the consequence of breaking the rules. No need for a warning because they already know what the rules are, and have then chosen to break them. We also keep a behavior chart of sorts that we place stickers on and each child got to choose what type of "reward" they wanted at the end of the chart. Clifford is only 1 sticker away from getting a toy gun he wanted, sad to say he's been here for quite sometime. I feel it is important to award positive behavior, so it's not only seen as negativity when they get in trouble. We make sure to compliment the children when we see them doing something good on their own such as sharing or helping out a sibling. You may be at a different age group stage with your T1, but one thing remains constant throughout the years, the RULES. It's difficult enough raising a child to grow up to be a responsible adult, but we have the added job of raising them to grow up being a responsible adult who understands the importance of their diabetes management. I can only hope we are on the right track. I'm sure the teen years will cause a few more grays than I am willing to allow and way too much in the line of consumption of caffeine. But I'm sure we will get through them.

Expectations....

I came across a quote that I am absolutely in love with and started wondering how it could apply to our life with Diabetes. If you think about it, it's actually perfect.

RISK: More than others think is safe

This we all do daily. Just living with diabetes you are risking more than others think is safe. You are risking your life on a daily basis. As we've discussed many times over, Diabetes doesn't follow any rules. Everything can be going along perfectly and it always tends to throw a wrench in things. Everyday living with diabetes is a risk!

CARE: More than others think is wise

If you are a PWD (T1 or T2), or a loved one who cares for someone with diabetes, also referred to as a T3, you do this daily too. I can say from experience that not a day goes by that I am not thinking about what went wrong, why a bg# was high or low, or if an illness is coming on, what will happen if he has that higher carb snack at bedtime, resulting in a larger dose of fast acting insulin. I for one know from my experience I care more than others believe is reasonable (doctors, nurses, etc, etc), but I know for me I have to, and it's the best possible way I can ensure that he is cared for properly and learns to care for himself properly. Besides I will only be handling his care for the few short years he is with me. I have to know that I've done everything possible to raise him to be responsible with his diabetes care in addition to everything else that life throws at him before sending him off on his own. One of the biggest things I can do is CARE, and that I will always do.

DREAM: More than others think is practical

If you are like myself you tend to dream about a day when diabetes is no longer in our vocabulary, or used in the past tense. We dream so hard for finding a cure, and we use these dreams to advocate, donate, and fight to find a cure. We dream more than you're average person dreams. Don't let anyone tell you it's impossible to find a cure for diabetes. Believe in your dreams and hold on to your dreams, and fight!

EXPECT: More than others think is possible

I expect my son to be alive the next morning after waking, I expect for him to be safe while he goes to school over 7 hours a day, I expect for his doctor's to provide him with nothing less than the best care possible, I expect for them to listen to me when I tell them that something isn't quite right, I expect for the insurance company to understand that my son needs what we're asking for, I expect for them to understand it's not all about money, it's about life and keeping him in his. Some may say I have really big expectations, but with diabetes you need to expect the world. Nothing short of it will suffice when it comes to the care and well being of your child or yourself. Don't let others knock you down and think you are less than deserving of what you are asking for and what you expect! Without expectations where would we be?

The game of diabetes...

The game of diabetes is definitely not as fun as the game of Life board game. I don't know about you, but in the game of Life I always ended up with 2 cars full of kids and not much money to show for... (maybe that was a precursor for the real thing....) But the game of diabetes you are thrown into seems a bit different. Quite a few times it will seem like you are in a losing situation no matter what you do, and believe me I've experienced these times where blood glucose levels would not cooperate no matter what we did, and that's just the fun of the game of diabetes.

You can do the same thing every single day, eat the same amount of carbs, start with the same blood glucose number and I guarantee you that chances are you will have a wide range of numbers all over the board. Diabetes enjoys the game of things. You could be driving along in the game of diabetes all perfect 100s across the board, and bam you land on DKA.... There is really no one constant in the game of diabetes other than BLOOD. I really honestly did start out to a point to this post, and maybe I side tracked. My point is that the game of diabetes is a balancing act, always trying to get a handle on things. If you are newly diagnosed, or your child is newly diagnosed the best piece of advice I can give you in your journey in the game of diabetes is to understand that diabetes doesn't play fair, so no matter what happens, highs and lows it is not your fault, we are just human beings and cannot control everything. Try to erase any guilt you are feeling now because during the game of diabetes more will be thrown your way, and you have to learn how to move forward knowing that nothing you have done has caused this. Guilt is the little evil tool of diabetes that it likes to throw at us, we just need to learn to bat it away.

Diabetes is a scary disease, I am not going to sugar coat it. Yes it can be managed and that is what we all try to do everyday. I remember once reading there are 400 different things that can affect ones blood sugar and only 3 of them are in our control. So cut yourself some slack! And my advice to the veterans in the game of diabetes, cut yourself some slack too! I know you are reading this thinking what went wrong with numbers, or what you could have done better, what you shouldn't have eaten, or fed your child. Stop, you are doing all you can do to keep yourself and your child safe, and health, cut yourself some slack, know that someone somewhere is proud of you, I am proud of you all!