10 Things I Hate to Hear from My Diabetic Daughter (and 10 Things I am Looking Forward to Saying Someday)
We are getting very near to the date of my youngest child's first "diaversary" (anniversary of the diagnosis of her Type 1 Diabetes.) I'd like to say that I am just now starting to think about how diabetes has affected our lives, but in all honesty, I think about it every day. Many, many times each day. You probably know this because I talk about it all the time. It really is quite consuming.
I don't mean to get depressing, but here are a few things I hear my daughter say that just make me sad. My heart really drops. She's 8. I hate that she has to deal with pain every day - physical and emotional. She does not say all 10 of these things in a day, but probably 8 of the 10 I will hear at least once in a week. But then, be sure to read on, because there is hope at the end of this post.
1. Darn it! I didn't get enough blood out. Now I have to prick my finger again.
Really, why should anyone's child need to make herself bleed? Her fingers are a mess. The finger pricks are actually much less dreaded than they were the first few months of diabetes, but she still hates it, and bargains with me to put it off when we can. The worst is when she pokes her finger and doesn't get out a measurable amount of blood. So she has to do it again. Very stressful.
2. Do you have to change my pod now?
We have found the insulin pump to be a much more effective way of controlling blood sugar than the shots we were giving. But the pod that holds the insulin only lasts about 2 days for her, and she does not look forward to getting that injection every other day. Especially if we have to do it while she is awake.
3. Today's a Dexcom day?
The Dexcom is her Continuous Glucose Monitor. It is a device that has a needle injected into her skin to take constant blood sugar readings. (Because it can be less accurate than ideal, we still need to do the finger pricks too. The Dexcom just gives us a good idea where her blood sugar is heading (high or low) and to what degree. Whereas her insulin pod is an automated injection, I have to insert her sensor for the CGM manually. Since I only have to change this once a week or so, (and we have only had it a few months), I am really not that good yet at inserting this flawlessly. And apparently, it hurts A LOT. (Especially to a little girl with Sensory Processing Disorder.) When I mess up and have to do it again, I feel just sick to my stomach. Even when she's sleeping, she cries in pain. Moms don't like to hear that from their babies. Especially from something they are doing to their babies.
4. Can I have a cookie?
If it doesn't have a carb count, then no. I am finding that cookies are the worst because they can vary so widely on grams of carbs. (Note: Diabetics of both types count carbs, not sugar. Sugar-free really means nothing to them.) We do have a fantastic scale that can tell us carbs on certain foods, but if we can't look up a carb count or make some kind of reasonable estimate, then we have no idea how much insulin to give. We can't risk giving too much or too little in a body that only weighs nearly 60 lbs.
5. Mom, I must be high. I'm SOOO hungry!
This is the meanest trick of diabetes. When her blood sugar is really high - when she really can't have something to eat - then her body craves food. We try to get around it with 0-carb foods, but apparently that doesn't cut it. I don't understand this, but it is totally not fair.
6. Where's my <insert one of many supplies we keep track of… meter, test strips, wipes, Dexcom, PDM, etc….>? or Did you remember to pack my… (see above)?
There are just so many things to think about when leaving the house. There is one little machine that controls her insulin pump - so that must go with her everywhere. If it gets left at school, we better get to the school before it closes! And don't even think about it ever getting lost somewhere. Out of test strips? That's a problem. No spare insulin pod? That's a problem. No fast acting candy for low blood sugar? That's a problem. Forget any of these when you leave the house, and you have to turn around and go home. One time, I had her bag all packed for church - and I left it on the kitchen counter. Yep, you guessed it. We had to leave church and go home. Last week at the pool, her blood sugar went down to 27. It doesn't get a whole lot lower than that before you need to do the emergency glucagon (concentrated injectable sugar to bring her out of a coma) shot. And I did not have the glucagon with us! Must have everything, everywhere.
7. Mom, I have a headache.
She gets these a lot. They happen when she goes from really high to really low, or some other big change. We are blessed that ibuprofen has worked well for her, but until it takes effect, she can't take noise, or light, or movement. It's just no fun.
8. But I don't want to sit out! My friends are having fun in the pool!
I don't know what it is about the water, but we have found this summer that anytime she goes near the pool, she goes low. So of course, if she's low, she needs to sit out of the activity until she goes up a little. And she's the one of my three kids who most likes to be in it, so sitting out is like punishment.
9. I think I'm going to throw up.
This is when things are really bad. If her insulin pod is not working, and she does not get insulin at all, all the bad stuff will build up and make her feel very sick. That was the trigger that actually led us to the hospital last year. She was vomiting without relief. Now, sometimes, it could be a stomach bug, but that is not good either. With no sugar left in your body, and no stomach to keep anything down… well, that's just a scary place.
10. Please take me to the hospital!
She has only said this 3 times since (and including) the day of her diagnosis. But she knows about the hospital. And she knows it has to be really bad to go. If she is asking us to take her to the place where she was poked and prodded endlessly until she couldn't remember anything more, then she is really sick. And Lord help me, I never want to go through that again with her.
Phew. That was a rough road. So, I like to think ahead. We are extremely hopeful about a new vaccine called BCG (not a new vaccine, but it is still in trial for treatment of Type 1 Diabetes). With it, we are hopeful that my child will not suffer from this disease after high school. Very, very hopeful. And when that happens, I CAN'T WAIT to say these things:
1. Go ahead and eat!
Especially with breakfast foods, we need to let her sit and wait after we administer the insulin, to give it time to take effect. Sitting and waiting is hard for a hungry child to do! She has been so good for us though. If she is not sure if we pumped it in or not, she will sit at the table and stare at her food until we tell her to go ahead.
2. Good night!
Too often our nights are interrupted with the need to fix blood sugars. Sometimes this takes a long time and we need to stay up through the night to do it. I can't wait to sleep through the night without worrying again.
3. Ready to swim?
No taping down sensors or pods and worrying about standing out. Just jump in the pool and go! No need to remember 4 extra bags of candy or the glucagon gun, just in case. And no more staring at my child when she swims to make sure she resurfaces and didn't go into a low sugar coma and drown. She's going to be okay.
4. Let's see if there are any free cookies out at the bakery.
I love my daughter, but I hate taking her grocery shopping. It was always our tradition to stop by and see if the bakery had any sample cookies out. You know what? Those cookies don't have a carb count. And every chocolate chip cookie is different. We don't go by the bakery anymore. But one day, we will go back.
5. So, what's the school nurse's name?
Our school nurses are terrific. I have heard stories about bad ones, but we are blessed. But I just know them too well. We speak at least once daily. And send notes back and forth. It's like when you know the principal so well for having a child constantly in trouble. No matter how nice the person is, you wish you knew them under better circumstances. But you know what? I know lots of nice people. Let's skip a few. I don't need more school officials to talk to every day.
6. Why don't you go to that sleepover at your friend's house?
She has not been invited to one yet, but I know it's coming. She's a little girl. And she's dying to go to one. Right now, I am terrified of it. I don't want to have to let another parent take my middle of the night responsibilities. Especially if that parent isn't familiar with what to do for a diabetic. My child is a pretty heavy sleeper, and she never wakes up to hear the Dexcom alarm her about her blood sugar. So… another thing I don't want to worry about.
7. I've got my tiny purse, and that's all we need, so let's go!
Remember all that stuff we have to take with us everywhere? It's like having a diaper bag again. It doesn't matter how cute it is, it still has to be big enough to hold everything. Man. I had just gotten back to carrying a little purse with just a wallet and a lipstick.
8. Gee it's been a long time since we got a medical bill.
Now, this is not to say we don't get medical bills for all our other various injuries and check ups, but the ones for diabetes supplies are quite costly. I'd sure like to give those up!
9. What's the number on our health insurance card?
Yup. I called insurance so often I know all the numbers- the phone number, the ID number, and the group number. That means I have been on the phone with them enough times to memorize them. And you know what it's like to be on the phone with insurance! (Actually, I hope you don't.) That said, I am grateful that we DO have insurance.
10. Time to go to the doctor. Just a regular doctor. For that ONE shot you get ONCE A YEAR!
Or whatever! I just want my little girl to not have to get any injections on a daily or near-daily basis. I want her to have as pain-free a life as possible. I mean, isn't that the loftiest motherhood goal? We WILL reach it. We will!
I have no idea how many carbs are in that pizza. Or where it ranks on the gylcemic index. Or how long it will take to reach your system. AND I DON'T CARE!
We want our daughter to eat good food. But we don't want to panic when she eats something less than ideal. We want it to all work itself out. We want her body to take care of her again.
Thank you for reading that glimpse into our life this past year. I know it will be a long road ahead of us, but here's hoping that the worst is behind us and the best is yet to come!
I will need to ask your forgiveness here, because I am not really a romance writer. I tend to think more logically and prefer fantasy stories. (Technically, I guess that really makes me a geek. Sorry if that disappoints.) So this post will not make you clutch your chest and sigh.
I would also like to note that everything below is based on how I see the world, and not necessary the definitive answer to the raging question, "What is love?" Does any human being have the answer?
Strange how I have to defend my view of love, isn't it? I think that's because I know it won't be liked, and many will disagree with me. It is a popular topic, though, so I would like to express my opinion.
I do think you will find it interesting, though. You may be surprised to see how similar love and hate really are to one another. Don't believe me? Keep reading.
1. Both Love and Hate are Actions, Not Reactions
No, I do not believe a person can "fall in love." That's not what love is. Love isn't finding the person; it's how you treat the person once you have them.
Also, I don't believe (and I bet you agree) that people aren't born haters. Even if your parents belong to strong protest groups, you do not come out of the womb hating anyone. Hate is learned. Unfortunately, a lot of hate is taught generationally, rather than experientially.
2. Both are Purposeful
You don't walk down the street and "hate" someone that you see. Neither do you walk into a room and "love" someone. I'm sorry if it doesn't sound romantic, but I do not believe in "love at first sight." That feeling is not love; it's pleasure. You are experiencing pleasurable sensory intake. It's all about you, not the other person. Now, if you choose to act on this sensation, and devote yourself completely and without question to the person you see, well, now we have a different story.
The same is true of hate. Hate is when you do something against a person. The term "hate crime" is accurate, though I believe it is redundant. Anything you do to hurt a person is hateful. (And if it is illegal, it is a crime.) So what is the feeling you have against a person you think you do not like? It could be a number of things - discomfort, annoyance, anger. It is possible not to hate people. If you have no desire to hurt someone, you do not have hate.
So please. Don't ever plaster me as a "hater" unless you see me doing something to actually cause physical harm to another on purpose. Let's get our words straight.
3. Both are Fueled by Your Passion
As I said above, you can experience feelings that are confused with love or hate, and call them something they are not. So how do you know the truth? The truth is, will you act on your feeling or not?
I don't like to eat carrots. I don't like their taste. Do I hate them? Well, I am not going to grocery stores to ban the public sale of carrots. I will even allow them in my house and feed them to my children. So, truly, I cannot say that I "hate" carrots.
However, I do hate Type 1 Diabetes. It has come to invade our house and upturn our lives. I have raised money to find a cure for this disease, put up awareness posts here and on Facebook, and even taken my daughter to Boston to submit a sample for a research study on a cure. I want to see this disease eliminated and will do anything I can to that end. I hate diabetes.
Similarly, I love the Lord. I spend my week working on plans to teach children everything they can receive about the love of Jesus. I gladly give my time, talent, and tithe to make sure others can also experience that love. On Sundays, I come to worship in sanctuary - in peace and communion - to express and receive that love. (Because He loves me too.) Love in action. (Note: my love for God is not perfect, like His is. Just needs to be said.)
4. The Opposite of Either is Not the Other
The opposite of love is not hate. It's apathy. And same with hate. Since both are high -passion ends of the spectrum, the opposite would be to "not love", or to "not hate." The emotion devoid of feeling is apathy. So, if someone says they hate you, at least they care. I think it would be worse to not be cared about at all. God says something like this in Revelation 3 to the Church of Laodicea when He tells them He wishes they would be either hot or cold, but not lukewarm. Those who are lukewarm, He says He will spit out of His mouth. Ouch.
5. God Acts with Both Love and Hate
God is a God of love. I'm sure I don't have to convince you of that. God showed His love in this: when we were yet sinners, Christ died for us (Romans 5:8). God LOVED us so much, He gave up His most prized offering - His only Child - to suffer our punishment for our sins, just so we could be with Him in eternity. (John 3:16, but in my own words).
Some people errantly think that God is not capable of hate. Well, aside from the fact that God is capable of EVERYTHING, there's another point to consider. As much as God loves us, why doesn't he just let us in to heaven? Because He HATES sin. He created heaven as a perfect place, and therefore, it would not be heaven if sin were allowed in. Sin is what is keeping His beloved people away from Him, and He hates it. (How did He show that hate for sin? With the very same event He used to show us His love for us - the sacrifice of Jesus on the cross.)
6. Love and Hate Do Not Balance Out
Think of two colors - maybe red and green. Say you like green better, and want to get rid of the red. You can't do that by mixing them together and just adding more green than red. You get brown instead. The same is true of love and hate. You can't love someone until you stop hating them.
If hate is already there, it cannot be covered over by love. The hate must be removed first. Because both love and hate are actions, you can't have them both happening against the same force. You can't hit someone on the head with a hammer and then hug them. The pain from the hammer is still there. You need to stop hitting them, throw the hammer away, and THEN hug them. (Still it might take time.)
7. Both Tend to Become Easier With Usage
This shouldn't be a surprise. The more you show love, the easier it becomes to be a loving person. Scientifically, if you create a thought pattern (to perform an action), your neurons become more efficient at traveling that path each time you use it. If you want to show love to your spouse by making coffee for him every morning, you will get to the point where you barely have to think about it anymore.
With hate, I think the same is true, but for a different reason. Hate is something people are wont to admit unless it is acceptable. The more hate is practiced around you, the less reluctant you may be to join in.
8. There are Different Kinds of Love and Hate
There are degrees of love and hate. I love my cats. I do. I will hold them and take care of them, and never expect anything in return from them. But I love my kids and husband more than that. It doesn't mean I don't love the cats, but if I could only save Jedi or CJ from a burning house, I would definite grab my son. (Then we would both cry over the cat.)
The degree to which we love and hate can probably be measured. I hate snakes, but not to the same degree I hate sin. In the Bible, much more is said about love. And 3 types of love are highlighted: phileo* love, which is brotherly, or family love, eros love, which is what we would liken to romantic love, and agape love, which is the all-encompassing love God has for us. I'm sure there are degrees even within these types.
*Forgive me for misspellings here. Spell-check isn't quite sure what to do with Greek.
9. Neither Love or Hate is a Life Sentence
Remember how I said I do not believe a person can fall in love? The opposite is not true. I DO believe people can fall out of love. Because love is what you do, if you stop doing it, it's gone. Love is a volatile thing. You can start loving again if you have stopped, but as I noted above, it may be a little harder until you are back into the swing of it.
Hate might be a trickier. First, you have to admit that you are showing hate. Hate has such a negative connotation, we would tend to justify it as something else or legitimatize it another way. Still, once you have admitted your hate, you don't have to hold onto it. You don't have to hurt someone else.
10. Love and Hate are Exclusive of Other Feelings
This would especially make sense since I have stated how I believe love and hate are more action-related than emotion-related. I can love a person (by treating them with respect and believe the best in them) and hate something they do. For goodness sake, that happens to my own self all. the. time. I hate many of the things I do. Many. I try not to reflect on them, because, well, why would I want to? But God tells me that I am fearfully and wonderfully made, (Ps. 139:14), and made in His image as well (Gen. 1:26). So I better have respect for myself, as His creation.
So, I can love you, but at the same time, be entertained by you, disgusted by you, comforted by you, or annoyed by you. (Think of your siblings.) I could feel completely bored with you, but still treat you with respect and dignity (I hope) because you were made by God. (Don't get paranoid. I have no personal examples of this.)
Now that I have ruined the romantic idea of love for you, stay tuned. My next trick will be discussing the difference between WANT and NEED. And as always, your reaction is welcome in the comments below.
Because I love even numbers and lists!