That's probably a lot longer than it should have taken. And to be honest, I didn't expect there to be one actual point in time when I reached this milestone.
What am I talking about?
Healing. A reversal of my view of my daughter's T1D diagnosis. The moment I said to myself, "I am so glad we know what to do now" instead of "I remember how sick she was."
It was like an avalanche, rather than sinking slowly in quicksand. I was in the car driving, with the kids, as it happened. In this week, I had been doing a lot of back-searching. Everyday through out the summer, I would say to myself, "This time last year, I remember looking at how thin she looked in her bathing suit," or "I remember how many times we had to visit the bathroom when we went to the ball game last year." (Four times in one inning.) The week of her "diagnosis" was the worst. In my mind, I could revisit the PICU room like it was yesterday, remembering so many details.
Interestingly enough, the day I stopped doing the "remembering" was the anniversary of "Diabetes Boot Camp." (For those who do not know, care of a type one diabetic child requires so much knowledge - nutrition, math formulas, medical techniques, emergency responses, and so on - that those discharged with the diagnosis are required to spend one full day in intense training, and then follow up with several more sessions.)
It was the day we brought her home from the hospital. So much like the day we brought our first child home as a newborn. We thought we knew enough, and pushed away the possibility that we could never really "get" it. We had all the basics, but had to learn how it would apply to our specific child.
We were new parents. Parents of a child with special needs.
You know how when you have your first baby, your other friends who do not have children try to fit right in? They try to say comforting things like, "Sleep when the baby sleeps" when they don't really know. Then they call you during nap time and ask if you are getting sleep. They want to go out with you and assume you have someone to take care of the baby.
This is similar. I was showered with sugar-free recipes. (Diabetics measure carbs, not sugar.) And friends were afraid to watch our "baby," so we didn't go out much without her.
When you have that first baby, you gravitate toward other parents of newborns. That way, you can talk about midnight feedings, sleep schedules, and colic. When you find out you have a special needs child, you also gravitate to those who know because they are there too. And those who are a step ahead of you are a priceless treasure.
We found friends in that latter category. They helped guide us to an endocrinologist who could meet our needs. They were up and on-line at 3 am when we weren't sure if we should change the pump site or wait out the insulin. They recommended the supplies that actually worked and hurt the least.
But their feelings were what helped the most. I had one dear friend tell me that the first year was the worst, but it got easier to deal with after that. (NOTE: Not EASIER. EASIER to DEAL WITH. There's a difference.) So I was waiting for that first year to end.
Waiting for the pain to ease. It's not easy when you hear, even in her sleep, your daughter's gasps of pain each time you inject her. Shouldn't that be gone now? Shouldn't she be used to it? No. It's pain, and she still has functioning nerves. It still hurts.
There was place in the back of my brain that knew the pain we inflicted on her each day was essential for her survival. But the front of my brain was a Mommy who never wanted her baby to hurt. I wanted to cry every time I hurt her.
No, that pain was never going to stop. It isn't going to stop until there's a cure. So in the meantime, I needed to toughen up. Not stop caring, just bring what was in the back of my brain to the front.
Little did I know, I couldn't do it on my own. I apparently have no control over my own mind and emotions. I had to wait on God's grace.
Low and behold, the day had come. My sympathy gave way to the bigger picture. It was the day I accepted her lot and decided to move on instead of whining about her problems. Feeling bad for her wasn't helping her.
She still deals with the pain and discomfort of daily pricks and injections, not to mention the headaches, irritability, hunger, and everything else associated with the disease. And I still try to comfort her with hugs and prayers, because they are really the only help I can give.
It might take my daughter longer than it took me. She's only eight. She's smart, and she's tough, but she's got a lot on her plate. (No pun intended.) Her life is in the hands of the same God who gives the same grace, but it's a whole different ball game between those two.
For me, though, God has given me the gift of seeing our blessing. I've come out the darkness of "why?" and entered the lighter stage of "when?" There will be a cure, and my daughter will go back to where she was before the pain. She will eat without checking her blood sugar. We will go out without packs of quick-acting sugar. She won't have to sit out at the pool due to low blood sugar, and we will ALL sleep through the night every night! (I can't wait.)
It will come. Until then, I can give thanks. Thank you, Lord, that we aren't living and dying in 1921. Thank you, Lord, that there is no question about whether or not we can obtain insulin and have a way to get it in her. Thank you, that it always works. Thank you that we have not had to go back to the hospital. (For her anyway.)
I spent too long being sad and worried. I still have some sadness and worry. But now I am glad to introduce hope and optimism back into my life. Here's hoping that might make the rest of our time go a little quicker.
This past week I rode in the Tour de Cure to raise funds for research for diabetes. As you know, it's a cause dear to my heart, especially now that my daughter suffers with T1D.
The bike ride was annoying. But then I realized that having T1D was probably more annoying, and therefore a good use of my time. Here's what I mean.
1. I Hate People
Whoops, that's probably too broad a statement. Allow me to refine. I hate exercising with people. When I run, I don't have enough breath to carry on a conversation AND use my asthma-strangled lungs to take in oxygen. So leave me alone and stay out of my zone. I'm focused on what I'm doing.
Speaking of my zone, riding my bike is a tenuous thing. I am not confident enough in my balance to ensure that I won't fall over and land on you. So stay away. And don't put me in a "pack" of other people.
(It should be noted, though, that playing sports does not count here. That's not exercise. That's fun, and more fun with people.)
1. High Blood Sugars Make You Feel Terrible
I only know this from watching my daughter. When her blood sugar is too high, she is a monster. And why wouldn't she be? Chemicals that work themselves through in a normal person are pooling in her stomach and blood supply and making her whole body feel sick. When it gets really bad, it is literally killing her.
So, those with diabetes probably hate people too, when their disease is getting to them.
2. There's So Much To Do to Get Ready
I'm a little bit into cycling now. Yes, I wear bike shorts and even the tight jerseys. Gotta have at least two water bottles and something to consume. I need my gloves and helmet, special shoes and sunglasses. Must have my cycling computer to know how fast I'm going. Then there's sunscreen, lip balm, phone, iPod, inhaler, & tissues. Let's not forget that fix-a-flat kit that I don't know how to use. Then, since it's not just a ride from home, I need to have my waiver, number, donations, I.D., toll money, directions… is that it? I hope so. So much stuff. (What a first world problem.)
2. In order to EAT - eat anything-, my daughter needs to first check her blood sugar.
This involves, cleaning her fingers, "priming" them to get the blood flowing, getting out a test strip and prepping the meter, lancing her finger, squeezing out the blood, hoping it's enough for the strip (which isn't always, in our case), dipping the test strip, waiting for a reading, cleaning up the blood and supplies. THEN we have to count the carbs in what she's eating, enter the blood sugar reading into the pump (or algorithm), enter the carbs, praying that she will eat and be satisfied with what was chosen, push all the rest of the needed buttons on the pump to get the calculation, decide if the amount of insulin the pump recommends is really appropriate, and then administer the insulin. Wait a few minutes, if possible, and THEN she can eat.
That's for every meal, every snack, pretty much every time she opens her mouth. Yeah. That's annoying.
3. It's Early in the Morning
Not a convenient time for me. I prefer exercising later in the day, and ideally late at night. Now, my ride started later, but my husband rode the 63 mile ride that I wanted to do before I broke my wrist. He woke up at 4 am for his ride. Umm, no thanks.
3. There's never a convenient time for your pancreas to stop working.
I can give my daughter insulin, but it will only work when it wants to. When my she eats pizza, we still have not found the exact time when the insulin and the carbs will intersect. That's not convenient.
It's also not convenient for her blood sugar to drop during school, so she misses class to go to the nurse. It's not convenient when her blood sugar goes high in the middle of the night and she is up sick in the bathroom.
4. I Have to Ask People for Money.
I HAAAATE asking people for anything, especially money. Fundraisers, even for a good cause, bring out the fear in me. I can't even bring myself to ask people to buy the books I've written - and that's my job! I'm a lousy marketer. This time around, for the first time ever, I didn't have as much trouble asking people to save my daughter.
4. I also hate PAYING money for things I shouldn't have to.
Like, bank fees, parking tickets, and medication to replace a hormone your body should already be producing. Recently, I picked up my inhaler from the pharmacy to find it was covered by insurance 100%. I told the pharmacist, "Hey, nice that I get to breathe for free!" She answered, "Well, I don't pay for air. Why should you?" Now, some of my daughter's medications and supplies are covered by insurance, but not all. What is not covered adds up. And heaven forbid we make a mistake (or the pump makes a mistake) and we need to pay for the insulin before the time the insurance company has allotted for us. It's really enough to make me want to suction insulin out of my own body to give to her. If only…
I am always telling my children that life is not a competition. Fair is not always equal, and all those clichés. But in this case, we can call a winner, and it's not me. So, I will ride as many bike rides as it takes until they find a cure for my daughter and others who suffer with diabetes. Thank you to all of those who make it possible by raising support money and arranging for it get to the right hands. May it only be a few more until we ride for something else.
I have always hated giving Audrey her shots. Even now that she is on the pump, and injections are only every 2-3 days, I still dread it. Knowing that it is keeping her alive doesn't make it less painful for either of us.
When she was in the hospital, she was severely dehydrated (which was baffling to me, as much as she had been drinking at the time). What do you get with a tiny, 40 lb., dehydrated child with wobbly veins? Apparently, a near-impossible stick, as the nurses kept telling me. We were in a very highly-rated children's hospital, and no one on the team of pediatric IV-specialists could get an IV started on my child. These are people who do nothing but start IVs on dehydrated children day in and day out. No one could do it. (*side note- Alan, to whom I refer as "super nurse" from our local hospital's ER, was the ONLY one able to get a line of any kind on her for the whole week. That, after more than an hour of trying.)
Watching all those professionals dig into my daughter's skin with needles for so long, was almost sickening to me. I'm not terribly squeamish around blood, and I have no problems with needles myself, but this was too much. The only blessing was that she was delirious and mostly oblivious to the pain. I can only imagine if she weren't.
Did you ever watch a child react to the sight of a needle? A needle that was going to invade their body? I believe most children universally scream like you've chopped off an major appendage. Why? Because they hate pain. Any and all pain, no matter how brief or necessary or non-life-threatening.
So what do we, the parents, do? We hold them down and make them endure it. We explain to them (or to ourselves) how this simple action keeps away a world of more dangerous pain and sickness. They don't understand. But we do. We must. Or else small pox would wipe out the rest of us.
A diabetic 7-year-old who needs 4 shots daily is just plain mean, isn't it? Especially when the child also has sensory issues with her skin. What torture! She dreads every moment of that pain. When she really can't take it, she runs away. And she cries. Because she knows what's coming and that I won't give up.
Who has it worse? The child who must endure the pain, not understanding its importance? Or the parent who cannot successfully communicate that the pain prevents death?
The parent has probably been acquainted with death. She has had family members delivered to the ground in beautiful boxes meant to seal them away forever. They never returned. Possibly, that family member suffered with an agonizing disease. Maybe they died in a horrific accident. Or it could have been a quick, easy passing. No matter. Her loved one never came back.
And that is not going to happen to my child. Not on my watch. That child can fight, kick, scream, and even try to run away. But she's not going to die. Not while I hold life-giving insulin in my very own hand.
You hear that, child? I hold your life in my hand. What I can give you will make it so you won't die. Why. Why? Why are you running away from it? From me? Why don't you believe me?
Oh yes. Because you don't know what death is yet. (Really, I don't either. But I know that I don't know the full extent. You deny it all.) To you, a child is invincible.
They are not. Children can die. Children do die. I hate to say it. I hate to admit that I am glad it is not my child. But it will not be my child. Not when I hold her life in my hand.
It's times like this when I "get" God, the Father. (To a limited degree, I admit.) He holds life in His hand. He holds it out for every one of His children. But not every one takes it.
Which one of us understands what happens after we die? None of us. No one has been there; no one can tell us. So we live our lives in pure oblivion. Like the invincible child who cannot die, we are the eternal souls sure that every one of us is bound for Heaven.
Only the Father knows differently. He desperately tries to tell us, just as the parents tell their children of the horrid diseases they will not be getting after they have endured their vaccination. The Father was so desperate to tell us, that He sent Evidence from Heaven. He sent His Son to tell us, to show us, EXACTLY what will happen when we die.
How frustrated is He when we don't "get our shot?" When we don't believe the precious Evidence He sent us? I know a piece of that frustration! Why on earth would my child NOT want the medicine that keeps her from dying? Why?
So why do God's children not take the medicine He offers us? Why? The medicine we need to take is simply believing that He loves us and already paid the price it took for us to be with Him in heaven when we die. It's so easy. Why are people not taking it?
All we need to do is believe. If the child believes the parent and gets their shot, they will not get the disease. If God's child believes, he too, will be rescued from the disease of sin. If my daughter takes her insulin, she will not die from her diabetes. If we accept God's medicine, we will not die a second death.
The vaccination ends the possibility of getting the disease. Audrey's insulin, unfortunately, does not end the disease. Only a cure will do that. Her pancreas is dead. It needs new life.
Jesus brought new life to us. There's nothing else that needs to be done. We can have new life by simply taking it.
But it's painful, right?
It could have been. It was. When God sent His Son, Jesus demonstrated the suffering that was supposed to have been for sinful man. But once He accomplished that, He concluded, "It is finished." Therefore, it does not need to be done again. One cure saves forever.
The only pain is submission. Dying to yourself and admitting that you cannot save yourself. It hurts to not be your own God.
But the reward should be amazing.
Some things in my life, I always thought were givens. I'm a nice person, so I need to act like it. I'm a neat person, so I need to be neat. I having a working brain. Right?
Well, I've had to alter my whole line of thinking lately. Allow me to let you in on a few conversations I have had with the Holy Spirit about how my life is changing. My daughter's diagnosis with T1D (Type 1 Diabetes) was a bigger change for me than I expected it to be - even 6 months down the line.
We knew my daughter would have to make the most changes, but the rest of the family had to make some too. Well, no one told us it would be easy. And I'm not just talking about what we eat. Here, you will see what I mean.
Me: Oh! I see she finally had her baby. She'll be overwhelmed at home. I should take her a meal to help out.
HS: When did you expect to be able to do that?
Me: At dinner time, of course.
HS: Will that be before or after you make dinner for your family, and how much time are you leaving in there for blood sugar checks and insulin bolusing? If you do that more than 20 minutes before she eats, you risk a drop. And if you wait too long even without the insulin, she could start falling and not catch up quickly enough.
Me: Oh yeah. I'm going to have to pass on helping anyone else out during a mealtime, aren't I? But I always make meals for new mommies. It's killing me that I can't do the extra helping.
HS: Why? Because you really want to help? Or because you want to look like you have your whole life together?
HS: It's harder sometimes to accept help than to offer it, because you have to admit that you are broken, and your best didn't quite make it. But think of it as an opportunity to let others feel what you feel when you help them.
#2: Donating Money
Me: The Readers Association! What a great cause to support. How much should I give?
HS: Well, how much do you have left after buying the pain-free lancing device, the new food scale, the medicines that were not covered by insurance, the organizing shelves, and bags,…
Me: I get it. I'm almost out of money this paycheck. And I really need to support the JDRF, so they can find a cure for diabetes and I won't have to worry about it anymore. But I guess I will pass on the Readers Association, even though I do want kids to read more. I can't give to every cause, even if I think it's worth it.
#3: Looking Good
Me: I'm off to the gym!
HS: Don't forget the phone. The school nurse might call. And you know she usually does.
Me: Thanks for reminding me. I forget a lot of things lately. I hope she doesn't call at the gym today. I really need to get in a good workout. Now to just brush my hair, and I'm off.
<Looking in the mirror>
Me: Yikes! Is this how I really look these days?
HS: Yes, I'm afraid all the late nights and getting up to fix blood sugars give you those dark circles under your eyes. And the stress may account for some of that new grey hair. The wrinkles, though, are probably just from being 40.
Me: Well, I'll have to just fix it with make up.
HS: That's probably not going to happen. If the nurse doesn't call you at the gym, she'll be calling you after… so don't expect time for make up.
Me: Well, at least I don't have to look at myself. Hope everyone else understands!
#4: Remembering Things
Me: OK, I've packed her lunch, counted the carbs, written in the daily log, written the note to the nurse, done her blood sugar, made and gave insulin for breakfast, made sure she has clean socks, checked her backpack for notes. I think she's good to go to school.
HS: Don't forget to calibrate her glucose monitor and attach it to her!
Me: So glad you reminded me. I should be able to remember everything, but with new routines added to the list, I forget a lot of things lately.
HS: I know. We just had this conversation, remember?
#5 Cleaning My House
Me: Where is that book?
HS: Sorry, I don't keep track of things like that.
Me: I know! I'll just clean the whole downstairs until I find it!
HS: Ha ha! Wait, you're serious? How long will your house stay clean if you get it all done today?
Me: Probably until tomorrow.
Me: OK, it will be a wreck again as soon as school lets out.
HS: Then don't bother. Use your time on more important things, like working on reports to the doctor.
Me: It's a waste of my time to clean? I'll go crazy!
HS: You're going to go crazy anyway with everything else you need to do. No need to rush it by doing it yourself.
#6 Thinking an Uninterrupted Thought.
Me: OK. Blog post. Here we go…
HS: Here's what you need to say…
Child: Moooooommmmmm!!! I need you!
Me: Coming! Hold that thought.
Me: I'm back. Blog post. What where you saying?
HS: "The 'Shoulds" I Can't Do Anymore." Make a list of…
Phone: Ring, ring!
Me: Ugh. I have to answer that. I have answer all the calls now. Be right back.
Me: Back again. Where were we?
HS: I don't remember. I forget sometimes too.
Child: Is it time for dinner yet?
… And one "Shouldn't" …
Me: Wow, with all that I'm not doing anymore, everyone's going to think I'm a mooch, a complainer, and a lazy bum.
HS: There you go, thinking about what other people think about you again.
Me: At least I won't be stalking another mother with a screaming child at the grocery store and threaten to call the police on her.
HS: No, but judging that woman for being an overprotective parent isn't any better than her judging you for being a kidnapper, is it?
HS: It's all judging.
Me: I suppose I do have enough to think about. I shouldn't be concerning myself with what everyone else thinks, huh? Especially if I am placing labels on those people too. Thanks.
HS: No problem. That's why I'm here, to guide you. Just do your best, and I'll take care of what is said about you.
Me: I hope you're taking care of a lot more than that!
My daughter has thousands of dollars worth of medical equipment attached to her body right now to take the place of one failed organ. She recently started on an insulin pump to do the job of her pancreas. Since the pump is a man-made device, we need to use an outside "brain" to activate it and tell it what to do. (My husband, the doctors, school nurses, and I are that brain.) To help this "brain" in its thinking, we need another device, called a CGM (continuous glucose monitor) to tell us how we are doing and adjust our thinking in operating the pump.
It's so complicated, and yet, those of us with non-diabetic pancreases have the same work occurring in our own bodies all the time with no outside thought required. I'm sorry, but I find that amazing. The human body is incredible. So, today let's think about how we value it.
I have been trying to find out an exact count of how many organs are in the human body. Sources differ, and I have seen answers between 22 and 78, depending on what, exactly, can be considered its own organ. However, there is a pretty universal list of about 10 that are considered "vital" organs (as in, you would die if they failed.)
So let's consider the cost of maintaining each of these 10, should they fail. In most cases, when an organ completely stops functioning, the organ would need to be removed and replaced by one that works. There are, of course, cases of manipulating your body or medical equipment to do the job of the failed organ (such as in the case of Type 1 Diabetes, when we can use medical equipment to supply insulin), but most of the other organs, if in complete failure would need to be completely transplanted. Here are the costs of transplanting the vital organs, according to the National Foundation of Transplants.
1. Heart - $1 million
2. Brain ~ $750,000 (This is the cost of 1 year of life support. If your brain fails, you are dead.)
3. Lungs - $800,000 (for both)
4. Skin ~ $700,000 (for 100% body skin graft)
5. Stomach ~ $25,000 (gastric bypass)
6. Liver - $575,000
7. Kidney - $520,000 (for both)
8. Large Intestine - $1.2 million
9. Small Intestine - $1.2 million
10. Pancreas - $290,000
Total cost of repairing all major organs in your body? $7,060,000! And those are just the vital organs. You probably would like to be able to see, hear, taste, talk, use the bathroom, and many other things involving other organs too. It seems the Six Million Dollar Man just got a boost in value.
Of course, right now, we are paying just a fraction of this to sustain Audrey's pancreas. I'm thankful for insurance covering so much of her necessary diabetic equipment, but what's left is a reminder of the price we pay to keep our daughter alive.
What is my point in drawing all this up? Imagine the cost of having to sustain each one of these organs, just to keep your body functioning.
God does it all for free.
This is just to keep your body going. The use of your mind, thoughts, feelings, motivations, and determination are priceless.
And let's go beyond the financial aspect. Here are some of the time requirements it takes to pretend to be a pancreas:
1. Trips to the endocrinologist, who happens to be over an hour away (and I'm sure there will be other specialists soon too.)
2. Calls to the insurance. (How much on-hold music can one person take? I'm near to finding out.)
3. Trips and calls to the pharmacy (I'm there at least once a week. Even the non-regular assistants know my name. Norm!)
4. Reports to the doctor (At least once a week, they need to review her medical settings. So, I need to send in current settings, discuss events, and review hourly blood sugars.These reports can be downloaded from her devices or hand-written in a log, scanned, and messaged to the office with an email.)
5. Equipment set up, maintenance, training, calibration, etc. (We needed to drive out to the endo 4 times just to learn how to use her pump.)
6. Carb calculating (I admit, I'm getting better at this. But not every chicken nugget is the same, and I have to look up a lot of our non-regulars. Even bananas differ in size, so I need to weigh them first.)
7. Health educating (You know I'm reading everything I can to learn about this disease.)
8. Blood sugar checks (They take much less time than they used to, now that she is used to them. But still, a few minutes several times a day. Then remembering to record it, use it, calibrate with it, and so on…)
9. Going to support meetings (This isn't a bad thing at all, but still requires time.)
10. Sitting around worrying if I'm doing all I can (Not necessary, but it still consumes my time.)
11. Blogging about it to let people know (Productive outlet, I would say, but again. More time.)
12. Helping to raise funds to find a cure (because who else will? We are riding in the Tour de Cure this June.)
This is all for one failed organ. That's A LOT of work. I am literally losing sleep over it all. Can you imagine how much work it would take to sustain ALL of your organs? To continue your life?
At what point does a caregiver say, "It's just not worth it?"
God is your caregiver, and He says, "Never."
God considered all of your worth - you. Just you! - and said, "I'm going to take on all that it entails to keep this one going."
If you'd like to take it a step further, we can examine your soul. Having your soul- your own, very soul - was so important to God, that he He allowed the cessation of all life-sustaining organs in the body of His own Son to be offered as the price to have you able to come near to Him. And yes, it would have been done for you, even if you were the only person in the world who needed it done. If everyone else in the world were perfect and already going to Heaven, except you, Jesus STILL would have come to earth and suffered everything He did just to save you.
Or my diabetic baby girl.
Or the old man standing on the corner.
Because you are worth that much. Every life is absolutely precious. Make sure you use yours for absolutely all it's worth.
A Morning with a Child with Type 1 Diabetes (Why It Takes Us So Much Longer To Get Anything Done Anymore)
Getting kids ready for school in the morning was never easy in the first place, especially for the one with "skin sensitivity issues." In other words, "NOOOOOOO! I AM NOT WEARING SOCKS TODAY!!! OR SHOES!!!" "Stop rushing me!!!" Ummm…
Our routine has become more complicated. For a person who has always enjoyed the pride of never being late, each day is a new challenge. We now have many more added steps (not to mention countless extra thoughts) added in, thanks to my youngest child's diabetes.
Below I have written out our normal, getting ready for school procedure. Included in it, in the purple, I have added the extra steps we now have to take because of the T1D:
1. Wake up the child. (We never had to do this before, but now we have noticed that high blood sugars lead to sleepiness, making it harder to get up in the morning.)
2. Hope we aren't starting the morning off on the wrong foot with crankiness due to any possible misstep.
3. Brush hair. (Must been done while child is entranced in watching TV. Because have you SEEN how much hair she has?) If it is summer, entertain and reject the possibility of a ponytail to keep hot hair off the neck.
4. Set up the kit for blood sugar test. (We call it the prick.)
4a. Wash hands.
4b. Make sure lancing device has a new needle in it.
4c. Check to make sure we have enough alcohol wipes and bandaids for the day.
4d. Unwrap a bandaid for the morning prick.
4e. Prepare a test strip to go in the meter (not putting it in all the way, because if you don't use it quickly enough, the meter shuts off and the strip records an error. Because the strips cost roughly $2 each, and we go through at least 6 in a day, this is a big deal.)
4f. Coax child away from the TV. (She's a little Type A about all this, so it is her decision that we never prick her without her fully aware.)
4g. Choose a finger to prick. Sometimes, depending on how many pricks we have had recently, her fingers may still be a little torn up and not well-healed, so this could take a while to figure out.
4h. Open the alcohol wipe and wipe down the finger to be pricked and all the fingers on the other hand that she will use to squeeze her finger.
4i. Insert test strip as she "primes" her finger to draw blood to it. (She is a slow bleeder, and it is often hard to get enough blood out before the meter shuts down.)
4j. Wait for her to say her required introduction of, "Do it quick!" (And not too close to the nail, or to the middle, or on the wrong side…)
4k. Prick her finger and squeeze.
4l. When the appropriate amount of blood has formed a bubble, dip the strip in and wait for a result.
4m. Wipe off excess blood and apply bandaid.
4n. Throw away used products.
5. Get BS (blood sugar) reading and…
5a. Record it in the log book.
5b. Calibrate her Dexcom with it.
5c. Record it on the meal log book to enter into the breakfast formula.
6. Figure out what she's going to have for breakfast.
6a. Into this thought process now is not only nutrition, but trying to remember how certain foods have affected her BS in the past, and if it has happened enough times to consider that a food "definitely" will always affect her BS in such a manner.
6b. If she is requesting certain foods, see how we can work it in to still be within a reasonable amount of carbs.
7. Calculate the carbs in the breakfast, enter that into the breakfast formula.
8. Finish working out the calculations for the formula and determine insulin needed.
8a. Record insulin amount in log book.
9. Prep insulin shot.
9a. Put on needle and prime injection pen.
9b. Get ice pack.
9c. Choose an injection site on her body and point it out to her.
9d. Pinch site "really hard" per her direction.
9e. Administer shot.
10. Clean up shot.
10a. Dispose of any sharps (needle/ lancet) in sharps container.
10b. Return ice pack and injection pen.
11. Make and serve breakfast.
12. Eat my own breakfast.
13. Cajole child into getting dressed.
14. Check on the lunch, packed last night.
14a. Double check that the necessary calculations are noted in the meal book. (Also done last night.)
14b. Pack the meal book in the school bag to go to the nurse at school.
15. Check special for the day and make sure library books are packed if needed or sneakers out for gym.
16. Make sure homework and extra snacks are in bag.
17. Help with socks and let her put on shoes while I turn off TV.
18. Put on Dexcom monitor, coat, and back pack.
19. Wait to solve any meltdowns, the best I can.
20. Take her out to the bus stop.
All of this takes place in about 45 minutes. During that time, I used to also be able to throw away all trash the rest of the family left out for me, wash the breakfast dishes, and clean the cat liter. Those chores are now fit in later in the day.
And keep in mind, all of the above is assuming everything goes smoothly, and no other surprises get thrown in. Some of the other issues that we have had to throw in just last week included:
* finding a Santa hat for the Sing-Along
* writing an excuse note for an older child's absence
* tracking down some chapstick to take care of lips at school
* super gluing the velcro back on the sneakers
* just needing extra snuggles
You know, and all that parent stuff. Also, I have 2 other kids.
After she goes, I'm not on my own yet. I need to make sure my cell phone is charged, because I will be on the phone with the school nurse 2-3 times during the day. I will also be touch with the endocrinologist's office several times a week.
If it's Monday, we also need to scan the log book page and message it to the doctor's office for an update to her formulas, noting any extra factors that could have led to highs or lows. (For example, a low after running around at recess, or not finishing a meal.)
We are still pretty early in our diagnosis, so we are still working out hospital bills from when she was in the PICU, insurance claims for her medication, and applications for a pump to administer her insulin. As I write this, I have the phone on speaker on hold with the pharmacy, waiting to hear if my co-pay reduction will be verified. The time on the phone currently stands at 1 hour and 2 minutes.
Once she comes home from school, we do it all again with dinner. Then homework, a bath, and one more prick and shot before bed.
I didn't want to share all of this with you so that you would pity me (or us). It's not a request for any one to help us to find a "better way to organize our life."
It's a plea for patience with us. When I forget to bring chips to a party, trust me, I was just impressed with myself for making it out the door. When you see me without make-up, I just didn't think it was worth my time that day. There's so much more on my mind these days.
And when my daughter is a little late to school, it might have been because she's tired of it all and needed an extra long hug from Mommy in the morning. I'm not going to deny it to her. She does have it tough.
So, thank you for understanding. It's our life now, and we are adjusting to it. If you are a praying person, please pray that a cure comes quickly for Type 1 Diabetes. Until then, we're praying for endurance. Because we're all a little tired.
I like to have my nails painted, but there are a few reasons I don't do it often. First, I don't get it done professionally -ever- because I have a thing about paying for things I can do myself.
That leaves me to actually do it myself. Ladies, you know the problem with this. Time.
For several years, my nails were never painted. I had babies. Babies sucked fingers. Sucking nail polish probably wouldn't taste so good. And, yeah. Time. When would there be enough time to let my nails dry? There wouldn't be, so I just didn't.
Naked nails lasted about as long as my extra baby weight. When I lost the rest of my baby weight, when my youngest was 3 or 4 years old, I celebrated with new clothes and a happier outlook. No more baggy, frumpy tee-shirts. Baggy had become too baggy, and I had to wear more fitted clothing. It was fun to try to look like a girl again.
The toes were first. Painting toenails is just easier because you don't use your toes as much as your fingers. But the fingers had to be done. Maybe not during softball season, but other times of the year.
Little by little, I was getting "myself" back. Myself likes pretty - pretty clothes, pretty jewelry, pretty me!
Then, my youngest child started school. Her kindergarten was all-day, so I suddenly had a few hours of quiet "me-time." I felt guilty taking it… in the beginning. But then, my runs got longer, my coffee dates with girlfriends became more frequent, and I became more relaxed.
There was still plenty to do. I still worked a part time job. And when I signed my book contract, I found out how much more work was involved in being an author. But I could make time for me too. I made time to paint my nails.
I grabbed a hold of that lifestyle. Kids in the morning- me through the day- family at night. And I kept my nails painted as much as I could.
Because I could.
But then I took a few steps back. Something reminded me that I can't be so self-focused. I got a message that said, "you need to be Mom, even when your kids are at school." That message? My daughter's diagnosis with Type 1 Diabetes.
She's had a tough go of it. The girl gets 4 shots every day, and at least that many finger pricks. What kid handles shots well, even the once a year shots at the doctor? None of them do.
So, she's reverting to some behaviors we thought we were done with. She's 7, and until her diagnosis, she was making her own breakfast, taking her own showers, and walking everywhere. Now, she wants to be carried, she needs Mommy to wash her hair, and we must make her breakfast. That, and the time of pricking, sticking, recording, checking, calling in, making appointments, going to appointments, gather supplies, and so on, is tantamount to another part time job.
So the time is not there. The nails were naked again, and just as I had worn the same shorts for several days in the hospital, I felt okay again if I kept the same pair of jeans out for a few days. It's a lot easier to focus on my kids- on controlling this disease- if I don't think about my appearance.
The other day I pulled out one of my favorite fall nail polishes. I stared at the bottle and counted minutes in my head. Would they dry before the kids got home from school? Probably.
But what if I'm needed?
What if the school calls and says I need to run over with more supplies? Just pulling my cellphone out from my purse would smudge the polish. What if she came home crying from her high blood sugar, and I was needed to hold her and stroke her hair? I'd get my wet polish stuck in her hair. What if I noticed she didn't have enough of the snacks she needed, and I had to stuff my hands in the pretzel bag? What if I have to test her blood, but I get polish all over the test strip? What if…?
I painted them anyway.
I felt guilty. I was choosing myself above my diabetic child. Over all my children. Over everything else.
Sure, this kind of thinking lines up perfectly with what the world is saying today. "Take care of you. You deserve it. How do you expect the world to come bowing before you if you don't show them you are worth their respect?"
OK, the world wasn't saying "Paint your nails." To be honest, the world doesn't care what I do with my nails, because the world is too busy thinking about itself anyway.
But it's okay. Life goes on.
Painting my nails was message too. I'm giving in. I can't control the disease. I can't. It's too big. (By control, I mean to put it into submission of my whim. We are not ignoring it and letting it go "out of control.") I'm getting that now. Diabetes is always going to be one step ahead of us. We can give her what we think is the right amount of insulin, and she could skyrocket. Or we could measure every last carb, and she will dip below target. I hate that, but that's what it is.
I had to paint my nails. It was a step. Diabetes might go any direction it wants, but I'm not going to sit and wait for it to decide where it wants me to go. I'm not going to put off doing my regular life activities while I am busy trying to predict where her blood sugar is going to go. It's going to go where it's going to go, and I'll take care of it.
One of these days, my little one won't need me to wash her hair. We will allow her to make her own breakfast because she is already counting how many carbs she is allowed to eat. And when she is not counting carbs or checking her numbers, she's going draw pictures, read books, and ride her bike. She's going to dress up pretty and wear her medical alert necklace like purple heart medal.
We have to start somewhere. I started by painting my nails. Now, I'm going to paint my daughter's too.
(The above picture is a stock picture. No actual nails were painted this badly in my house.)
It was much worse. When my baby told me on the first Thursday of the school year that she didn't feel quite right, I kept her home from school, even though there was no fever. She doesn't make up illnesses. She loves school.
So, I had her rest on Thursday, and Friday she felt a little better. Saturday was not a good day. We ate our dinner out at a family buffet. She was miserable, but determined to eat. Strange. She ate a main dish, so I allowed her to have an icee drink, which led to more pain in her belly and more crankiness. (She wouldn't tell me that her belly was upset, because she was afraid I wouldn't allow her to eat! Remember this…) Then, upon leaving, we treated the restaurant to our daughter giving back everything she ate… right in front of their establishment.
Home for rest. More crankiness. I was eager for the virus I knew was in her body to hurry up and run its course. She had no fever - just like the stomach bug we all had a few months previously. While Sunday she stayed home from church to rest again, and seemed to being doing a little better, she still didn't eat much (because we didn't let her). She was terribly thirsty, and besides all the water she had, we made sure she had plenty of ginger ale to help her belly. And a new symptom was developing - wheezy breathing. She must have had a cold and stuffy nose on top of everything else.
Monday was bad. All she wanted to do was snuggle. On my lap, I noted that she would need to brush her teeth when she felt better. Her breath was pretty bad.
She could barely walk, but was moving fast enough to get to the bathroom several times. By evening, she was throwing up. More ginger ale. She wanted to spend the night on the floor in the bathroom. Writhing in pain, she begged me to take "it" away. How I wished I could! Throwing up did not make her feel better - it made her feel worse. That was a clue to me that something wasn't right. This was not a virus. Continuing to snuggle her, I felt her heart. It fluttered. Another clue. That was when I made my decision to call the doctor.
The on-call nurse called me back around 10 in the evening. It didn't matter how late it was, because I knew I was keeping her home from school the next day. The nurse felt we should head over to the the ER because she could have been dealing with a blockage. In my pajamas, I scooped up my baby, who could no longer walk, and brought her to a very crowded hospital.
At this point, she was screaming in pain and frustration. That might have been a good thing, because we were called almost immediately. However, my little one had deteriorated to the point where when she needed to go to the bathroom, I had to hold her up while doing the whole procedure for her. Pulling up pants while baby girl can do nothing but slump? Mama got a work out. Also, this was when the incoherent speech began. At that time, I had no idea the dangerous waters she had entered.
It was only a month ago, but some of this night was a blur. I believe the great ER admitting attendant finagled to find us a room somewhere between 11-11:30pm. I remember my baby lying on that big bed while grappling with the thought that she had lost 20 pounds. (Keep in mind, we are talking about a 7-year-old who started at 60 lbs. earlier in the summer.) I remember looking at her ghostly white face and thinking about how deeply her eyes were sunken in.
Several great nurses worked with us, and it was immediately determined that she was dehydrated. How can that be? I thought. All she's been doing all summer has been drinking water.
The dehydration provided a new problem, one that would cause trouble all week. This tiny, 40-lb. child with roll-y veins would prove to be a challenge for any professional looking to place an IV. At first, she found this needle-digging painful, but after the first hour or so, she was too out of it to even notice.
A doctor had been in to ask the same questions I had already answered for nurses and other attendants. I don't even remember what they were now. He mentioned CAT scans and testing for some scary diseases. I'm pretty sure God let those diseases float in one ear and right out another. I have no idea now what he said.
What I do remember is the nurses calling for Alan - the Super Nurse. He remained the only person able to start an IV on her through the week. (This includes anyone on the pediatric IV specialist team in the regional ICU we went to.) It was Alan who noticed her wheezy breathing and said, "Has anyone tested her glucose?"
No one blinked. Someone immediately moved to get a nearby reader and did what seemed to be an instantaneous test.
The number, the moment, that changed our lives. I knew a little about diabetes. I knew they were testing her sugar level and that they expected to see a number between 80-100.
561. Where it all changed. Treatment now had a direction. Of course, I was in a daze, still dwelling on that number that I knew was bad. There were going to be no more tests, not at our local hospital, anyway. Now knowing how very sick my daughter was, and had been for some time (her A1C was 14.0), the doctor was hurriedly making plans to get her transferred to a hospital with a pediatric ICU, an hour and a half away.
We thought she had a virus.
Really, she had Type 1 Diabetes. And she had gone into Keto Acidosis (DKA). Doctors were now concerned, as I would later find out, about swelling in her brain and the permanent damage that it could lead to.
She must have been fighting this through the whole summer. My baby was literally starving, even though she was terribly hungry all the time. Her pancreas had shut down, and was no longer producing the insulin needed to get sugar, needed for energy, into her cells. So, instead of going where it needed to be used, the sugar from the food she ate sat in her body and broke down into acid. Vomiting, urinating, and wheezing were all her body's ways of trying to get rid of all that extra acid. It wasn't working, so the acid went into her blood, resulting in DKA.
At the regional hospital, I was told she had one of the lowest pH's (most acidic) they had ever seen in a child.
Why did she lose so much weight, even though she was so hungry? Since her cells weren't getting the sugar they needed, they fed off her reserve fat and eventually muscle. Breaking down the muscle, leaving acidic residue in her blood. Her cells weren't getting fed. She was literally starving.
Once the ambulance got us to the next hospital, a pediatric team got working on her right away. The paramedics left us and were replaced by several doctors and nurses. It was going on 6:00 a.m., and neither my baby or I had slept at all. For her, it was because even though her speech made no sense, the doctors were afraid of her losing consciousness. So they kept her awake. For me, I was just too scared. We wouldn't be able to sleep through the night for a few days more.
Another round of questions came for me and for her after we arrived. I was asked the same questions I had been asked a few times before now, about family disease history (of which there was none) and so forth. She was asked questions to determine her lucidity, such as her name and who I was. I was so nervous about her answering correctly, I could have thrown up.
Throughout the next day, she began to "transition" as they told me, out of DKA. The vigilance and constant presence of the nurses made me nervous. They were worried too. Fear was an ever-present guest in our hospital room. I was taken aside early the first day to be told that visitors should be kept to "family only" during her recovery. Fear didn't get the memo, because it is not part of our family.
The many machines she was hooked up to fed her the liquid, medicine, and nutrients her body needed, while others monitored her heart, blood pressure, and other vitals. She still has some residue of the tape marks on her little body.
As she came out, through the week, her breathing became more normal, her skin tone less ashy, her face less sunken, and her feet less blue. All good signs. Then, as more tests needed to be taken, more blood needed to be drawn, and with her awareness increasing, the blood draws drew many tears and wails in addition to the scant amount of blood they were able to get. As painful as it was to watch her recognize the pain, I was thankful that she was with us and able to cry.
Eventually, the IV fluids and insulin were removed, and the training began. I was thrown into the world of shot giving. God made me a fast learner as I needed to be. But watching trained nurses struggle to get enough blood from her fingers on a prick should have given me an indication of what we had to come at home.
The turning point and highlight for my little girl was a visit from the therapy dog, Jasper. I am so thankful for Jasper. As he jumped up onto her bed, ready for a loving petting from tiny, bandaged hands, he had no idea he had brought the first smile to her face we had seen in days.
In truth, we were beginning to see what the high sugar level and acid in her blood had done to my little girl over the summer. Screaming fits and toddler-like tantrums had become such the norm, we joked about walking on eggshells. The reality was, she just felt miserable and had no way to tell us that her pancreas had stopped working.
After she was discharged, we spent the next day in "diabetes boot camp," learning about the disease, the basics of her care, and most importantly - how to feed our child. Our lessons have been reinforced daily.
The first few weeks at home have been tough - especially on grumpy days when her sugar is high. I was asked in the hospital, repeatedly, what questions I had. At the time, I knew too little to know what to ask. Now, I wish I had a live-in nurse just to answer questions (and if she could do pricks and shots too, that would be great.)
We haven't really told her much about what "forever" is going to look like for her here on earth. That's because we are sincerely hoping a cure is on the horizon soon. If nothing else, this new diagnosis has brought us to our knees much more often. He never left her, and we are sure He will always be by her side. God has been good - now that she has the medicine she needs, she is feeling much better than she had been through the summer. Our permanently grumpy little girl has gone away and been replaced by one more aware of what her moods mean and how to control them.
We thought she had a virus. We were wrong, but God saw us through and saved my baby from what could have been something very bad. I hope this post has given you some ideas of symptoms to look for if your own child gets sick and you worry it could be Type 1 Diabetes. I will reiterate it by posting a list soon. Until that time, give your child a hug, and remind him or her that God is always in control.
Passion Under Grace,