I've shared a lot about other people's frustration and stress dealing with T1D. I have had it too, but the worry about blood glucose lows have yet to hit me.
Until today. Now to explain:
We are about 2 weeks into being a family with T1D. Johnny's doctors have kept Johnny in higher blood glucose numbers for multiple reasons, but the over all reason is that if his blood glucose drops low it is can be very dangerous. Our "target" blood glucose range for Johnny before meals is 100-200. He has been below 200 twice since we have been home, usually between 280-400 (checking 4 times a day for 14 days = 56 checks... 2/56 isn't good). Well 2 days ago the doctors called and after evaluating his recent 280-400 numbers they increased both his long lasting insulin (Lantus) and his fast acting insulin (Humalog). The first day I didn't notice much of a difference. Yes it was lower but still in the 250-300 range. The next day the lowest reading was before bedtime at 190. I have been instructed to get up at 2 am and check his blood glucose and correct it if it is low only (give him sugar). Last night I tossed and turned most of the night anticipating my 2am alarm, wondering if it would be low, worried that 2am would be too late, basically like a nervous mom is expected to sleep. My alarm went off at 2 and I shot out of bed and ran upstairs to check.
256
Okay... 256 isn't even close to low. YAY! I feel good. Too good. I can't sleep. I am now on a high with relief that he is okay. I think it was close to 4am when I did finally go back to sleep. The 6:30 alarm that woke me up next was unpleasant, but I got up right away. We had a full day to prepare for.
Johnny's morning numbers were 250ish, great. We had a quick morning and then it was off to Johnny's first day back to school. (School is what we call his 2 day a week 1/2 day program at a local church.) He missed 1 week being sick, then being in the hospital. He missed the 2nd week because it was their spring break. He missed the first day this week due to changing insulin and mommy wanting to watch him. So today made 3 weeks since he has been to school, and when you are 2.9 years old... three weeks is long enough to start from scratch. Drop off was a little tough, but by the time I came to get him 3 hours later he was having a blast and told me how much fun school was. I was a little nervous today while he was at school about the "what if's." What if he goes low and they don't notice? What if they just think he is showing signs of a low and give him the emergency juice or skittles? How will I know what really happens? You see, his school is extremely loving and supportive. I am a huge fan of how much care he gets from them. Some parents are very concerned with what their toddler is being "taught" while at school but I kinda feel the opposite. My child is smart. (I am not biased at all, right?) He isn't a genius, but he is smart. He and I do a lot of activities based on learning, and he loves it. He can count to 20 perfectly and beyond not so perfectly. He knows his abc's and can identify most letters independently. He has a great vocabulary and is a very effective communicator. He knows colors beyond red, orange, yellow, green, blue, or purple. He knows many many shapes. He is an animal whiz! He knows about dinosaurs, their names, their features, and their diets (okay so that was dinosaur train... not me.) My point is, at 3 years old I feel very comfortable giving him the education he needs. What I want is for him to like school. I want him to think of teachers as trustworthy adults he can count on. I want him to WANT to be with other kids and be social. I want him to learn how to share and take turns. I want him to see how much fun he can have away from mommy. I want him to feel that other people care about him. This "school" has met every want I have.
But...
Now we have T1D....
This school does not have a school nurse (its not a school). They are not going to take on the medical responsibility of testing him and counting carbs and giving insulin. I don't blame them and for now I still want to do that for myself. But they are willing to keep him in the program with some modifications. 1) The days used to be from 9-1pm which included a school provided snack, and parent provided lunch. Now, I provide his snack so that it is 15 carbs or less and I pick him up at 12 before lunch. 2) I met with the director and all his teachers and gave them a basic run down of T1D. They are not going to be testing Johnny during the day (and technically if he were home with me I wouldn't be either for those 3 hours). They are really aware of how dangerous getting low blood sugar is for him, what might bring it on, and what are symptoms of it. They have been instructed by me that if they suspect he is low, just give him 1 of the emergency snacks (juice, skittles, and so on) that I pack for him and call me to update. I would much rather them be wrong and he have a spike, than for them to not give him something because the signs weren't 100% clear.
So, we have a plan in place. The school is completely on board. (Johnny isn't their first T1D kid) Our numbers look good... however I am a nervous wreck the whole time he is there. Combine with my awesome night's sleep... I have very little nerves left.
I keep busy during this time with business issues that needed to be addressed. Before I know it, its time for me to head back to pick up Johnny. He did great! We get home and test for lunch, 268. All that worry for nothing. After all we BARELY increased his insulin. By mid afternoon my pregnant body and brain are worn out. Lucky me, my husband is done with our business early and comes home to take over for me. He and Johnny leave to run errands and just to buy myself a little alone time I give them some of "MY" money (eh, its all my money right?) and tell John to take Johnny our for dinner after and have some father/son time. Yay, peace and quiet... I am dead asleep in less than 10 minutes. When I wake, it is 6pm. My adrenalin rushes instantly because I know Johnny has probably had dinner. I wonder if Daddy remembered to do everything. Did he record the numbers? Did he look up the carbs correctly? Did he feed Johnny enough? Did the insulin shot go well in public? Ah... the dang nerves again. I call and John tells me everything is fine and they are on their way home. Of course it is... John is a great dad... he can handle this. Johnny is doing so well with his blood checks and insulin shots, I have no reason to think it wouldn't go well. When they get home John tells me the numbers.
128!
128 before a meal! My heart beats faster. This is the lowest it has ever been since we were diagnosed. 128 might as well been 68 in my mind. I can't believe he was so low. I feel anxious that something is wrong. I wonder if his pancreas is working again, I worry about dosing him for dinner at all. I obsess over this for the next 2 hours until bedtime snack when I can check him again, 150. OMG 150 and I am going to send him to bed? He has never gone to bed that low, what if its too low? I just know what kind of sleep I am going to get tonight. If I thought it was hard to sleep last night, tonight will be awful.
So here's the thing. I am a very logical-straight-forward-numbers person. All the numbers from the past two weeks give me ZERO reason to think he will be low tonight. He has never been lower at 2am than he was at bedtime. He has never dropped more than 30 points between bedtime and morning. However this is my precious baby and logic has nothing to do with it. The "what if's" completely man-handle the logic right out of my brain. So here I am, 40 minutes after putting my little one to bed. I am so tired. I feel the punching and kicking of a serious wrestling match going on in my giant uterus. I know the alarm is going off in 4 hours and 20 minutes. I know I wont sleep well between now and then, and I know that I wont sleep well after and it wont matter if he is or isn't low... I wont be sleeping. I should go to bed and try.
Instead... Its milk and oreos time with the DVR.
Nighty-Night All!
Thursday, March 22, 2012
Wednesday, March 21, 2012
Online Support Groups vs Online Business Reviews
I own two businesses. I am well aware of the fact that an upset client is 10 times (if not more) likely to take the time to get online and write a negative review of the business than a happy client is. Happy clients expect to be happy, it doesn't even cross their mind to get online and tell everyone how their expectations have been met time and time again for years and years now.
I'm starting to get the same feeling from some of the T1D support groups I've joined. I read such sad and difficult stories about living with T1D and how hard it makes life for everyone involved. I read these over and over again in multiple groups, not as much in others. When I first joined I was terrified. I couldn't imagine that Johnny and our family are going to have to struggle daily like some of these support groups make it seem. I was told over and over about getting up every 2 hours from now until Johnny moves out to check his blood sugars at night. Now, I am only 2 weeks into this... and I don't know what I don't know... but it seems to me that this might be sort of like the online reviews of business. If you are struggling with T1D (which many people really are, so I am not saying they are not) then you seek out these support groups. If you are not struggling and you are living life with T1D fine other than the obvious adaptations... then why would you seek out these support groups... it wouldn't occur to someone who doesn't need support managing T1D.
Maybe I am still in denial? I really don't know. I am just trying to keep an open mind and positive outlook.
I'm starting to get the same feeling from some of the T1D support groups I've joined. I read such sad and difficult stories about living with T1D and how hard it makes life for everyone involved. I read these over and over again in multiple groups, not as much in others. When I first joined I was terrified. I couldn't imagine that Johnny and our family are going to have to struggle daily like some of these support groups make it seem. I was told over and over about getting up every 2 hours from now until Johnny moves out to check his blood sugars at night. Now, I am only 2 weeks into this... and I don't know what I don't know... but it seems to me that this might be sort of like the online reviews of business. If you are struggling with T1D (which many people really are, so I am not saying they are not) then you seek out these support groups. If you are not struggling and you are living life with T1D fine other than the obvious adaptations... then why would you seek out these support groups... it wouldn't occur to someone who doesn't need support managing T1D.
Maybe I am still in denial? I really don't know. I am just trying to keep an open mind and positive outlook.
Good News! Yesterday was a tough day!
I know... I know... Why is that good news? I'll tell you, because as hard as it was for me to get through yesterday it had NOTHING to do with Type 1 Diabetes! YAY!
Numbers were fine, still not in range but eh... he will get there. Shots went fine, although at lunch I must have hit a vain or something because we had a bleeder! He didn't mind it any more than any other injection though.
Yesterday was hard for normal I'm-6-months-pregnant-with-a-3-year-old reasons. I kept Johnny home from his first day back to school for 2 reasons. 1) We changed his insulin ratios and I wanted to watch him for lows. 2) We were having a major storm and I didn't want to drive in it, and if I had to go pick him up early my drive would be even longer. So I ended up stuck in the house with 2 bulldogs, who think they don't need to do their business outside because it is storming. And a happy-crazy-high blood sugar-toddler who is bouncing off the walls simply because I can't let him outside to play. Combine these things (or the mess these things made all day!) with my growing belly and weakening back, I was tired and sore. I kept going but by 4pm I thought I might end up in the hospital because my back pain was so bad and my braxton hicks seemed more intense. (I am quick just to go to the hospital and let them tell me I am fine since Johnny's diagnosis.) So I ignored the dogs, and bribed Johnny to lay in Mama's bed with me and watch cartoons. It didn't work... by the time my husband got home at 4:45 my room was torn apart, my toothbrush was later found in my clothes hamper, the 1 pile of sorted laundry waiting for the washer was scattered over my entire floor, Johnny's pullup was taken off at some point and left on the floor... but the good news was I stayed in bed. Laying in bed helped both the contractions and the back pain so I had to just deal with the mess. My husband got home and took Johnny out to pick up dinner. We shared a some chicken pasta dish and calamari from a local Italian place, it wasn't that good... but not needing to cook or clean up from cooking made it taste better. Johnny had normal 3 year old meltdown at dinner because I wouldn't turn the TV on during dinner (remember that post I had about lowering the bar for a short while, and how I didn't think it would turn him into a brat... well... no comment.) Eventually the three of us ate dinner at the table with out the TV on. After dinner was another meltdown that included throwing toys on the floor. We asked Johnny to pick them up and he refused... that is too low for my bar to go. So we offered him a choice between picking them up or sitting in time out. He chose time out. 3 minutes later we asked him to come back and pick up the toys, he refused so we offered him the time out or to help mama pick up the toys (softies I know)... he picked time out again. But the third time he was given the choice he was very helpful and picked up all the toys. Later that night we were treated to a dance performance during American Idol. Of course by the time I grabbed my camera he was just going to act silly... but I love him anyways.
Numbers were fine, still not in range but eh... he will get there. Shots went fine, although at lunch I must have hit a vain or something because we had a bleeder! He didn't mind it any more than any other injection though.
Yesterday was hard for normal I'm-6-months-pregnant-with-a-3-year-old reasons. I kept Johnny home from his first day back to school for 2 reasons. 1) We changed his insulin ratios and I wanted to watch him for lows. 2) We were having a major storm and I didn't want to drive in it, and if I had to go pick him up early my drive would be even longer. So I ended up stuck in the house with 2 bulldogs, who think they don't need to do their business outside because it is storming. And a happy-crazy-high blood sugar-toddler who is bouncing off the walls simply because I can't let him outside to play. Combine these things (or the mess these things made all day!) with my growing belly and weakening back, I was tired and sore. I kept going but by 4pm I thought I might end up in the hospital because my back pain was so bad and my braxton hicks seemed more intense. (I am quick just to go to the hospital and let them tell me I am fine since Johnny's diagnosis.) So I ignored the dogs, and bribed Johnny to lay in Mama's bed with me and watch cartoons. It didn't work... by the time my husband got home at 4:45 my room was torn apart, my toothbrush was later found in my clothes hamper, the 1 pile of sorted laundry waiting for the washer was scattered over my entire floor, Johnny's pullup was taken off at some point and left on the floor... but the good news was I stayed in bed. Laying in bed helped both the contractions and the back pain so I had to just deal with the mess. My husband got home and took Johnny out to pick up dinner. We shared a some chicken pasta dish and calamari from a local Italian place, it wasn't that good... but not needing to cook or clean up from cooking made it taste better. Johnny had normal 3 year old meltdown at dinner because I wouldn't turn the TV on during dinner (remember that post I had about lowering the bar for a short while, and how I didn't think it would turn him into a brat... well... no comment.) Eventually the three of us ate dinner at the table with out the TV on. After dinner was another meltdown that included throwing toys on the floor. We asked Johnny to pick them up and he refused... that is too low for my bar to go. So we offered him a choice between picking them up or sitting in time out. He chose time out. 3 minutes later we asked him to come back and pick up the toys, he refused so we offered him the time out or to help mama pick up the toys (softies I know)... he picked time out again. But the third time he was given the choice he was very helpful and picked up all the toys. Later that night we were treated to a dance performance during American Idol. Of course by the time I grabbed my camera he was just going to act silly... but I love him anyways.
Monday, March 19, 2012
2nd Weekend @ Home
We did it! A whole week living with T1D! It ended a whole lot better than it started. It makes me very eager to see what it is like to have a whole month, or a whole year under our belt.
We had a great weekend. Did mommy cry this weekend? Um... of course. But like I said, not only am I pregnant but I cry often anyways so that isn't a big deal.
Saturday-
Johnny had a visitor come by to wish him well and give him a present. A year or more ago we started using one of our client's teenage daughters as a baby sitter. She is a senior now and such a sweet girl. Her mom is a nurse and for now her plan is to go into nursing as well. They were so sweet and offered to baby sit for Johnny (mother and daughter) sometime so John and I could go out on a date. I am definitely going to take them up on it! Johnny was thrilled with his new toy, a bubble making Lightening McQueen! Soon after we had Grandma, Granddaddy and Miss Susan (a baby sitter we often use and have for 2 years) come by to see what lunch time routine for Johnny would be. I prepared them by telling them that sometimes he still says "no" and even gets a little whimpery but he will get over the shot as soon as we are done with it. Johnny showed me! He didn't even flinch for his shot, she just sat there like an angel and turned me into a liar. Good for him! I was so proud of him. It really seemed to make everyone feel much better about possibly administering these shots for Johnny one day.
Johnny loved having the visitors, and was sad to see them go. A short time after I got a message from a friend who was free and looking to visit. I am so used to being alone Saturdays since John works and most my Mommy friends are with their husbands, so I was happy to meet this friend and her daughter at a local park. (Thank you for the Starbucks if you are reading this, friend!) Nothing like a girl friend, fresh air, iced vanilla latte, and feeding the ducks to recharge the batteries. We went during snack time so I let Johnny eat his snack in the car on our way there. Lesson learned... feeding the ducks was a little difficult because Johnny wanted to eat the bread. So, next time we feed the ducks, I just need to make bread Johnny's snack or bring something more tempting for him to eat at the same time. The whole day Johnny's numbers ran high, but it didn't stress me out. At this point I have confirmed with his pediatrician and his Endo team that is normal, planned, expected, and safe. But the numbers were higher than the numbers that put me on edge and ruined my day just a week ago.
Sunday- Johnny woke up in a great mood! For the first time this week he seemed to eat close to normal portions. He didn't want pancakes (aka bread triple dipped in eggs/cinnamon), he wanted chicken and yogurt (very common lunch) for breakfast. I was happy to make it for him. He did drink 2 cups of milk, but hes a toddler and milk can only be had at meals. After a little relaxing at home, John, Johnny and I went to our local park to feed the ducks again... this time I brought a snack for him to eat too.
We met a friend there with her two little girls. I loved watching them play and feed the ducks, it was so simple and exciting for them. The weather was perfect to spend the morning outside. After all the bread was thrown into the pond, we made our way to the playground.
In the end, we spend about 2.5 hours at the park today... it was a nice break for all of us. (By the way, I snagged some awesome hand me down equipment for Jocelyn from this friend, THANKS!)
When we got home, mommy had to get some business work taken care of so Daddy was given the job of distracting the monkey so I could try to "focus." Daddy did a great job and turned our entire upstairs landing into a blanket fort. Johnny helped bring all the pillows that he could find in the house. The filled it with every book Johnny could reach. I couldn't stand it, I had to join them for a while. We all read books to each other and lounged on the pillows. (I am so annoyed that I didn't take even 1 picture!) When snack time came I offered Johnny oranges and to my surprise said yes, and a bigger surprise is that he ate them! Pre T1D he ate them often, but since the hospital all this kid wants to eat is bread, crackers or similar... this was the first fruit he actually ate in a week. I finished my business finally and by then it was time for dinner. My hubby did our grocery shopping with Johnny in tow yesterday (yes to give me a break), and while he was there picked up some foods to grill today. He grilled us a fantastic and simple meal of pork chops, pineapple, and asparagus. It was such a great day that after eating the three of us and the dogs headed to the back yard to relax and play. Beautiful day!!
Today's numbers where lower than they have been but still higher than our target. It feels good to see them lower, but it feels better to not let the numbers control my mood.
Thank you to everyone who visited, called, texted, emailed, and facebooked us this weekend. Feeling connected and not alone has really helped me personally. I want all of you to know, that even the one sentence messages help. Thank you all!
For anyone who may just be diagnosed, every day gets better. Hang in there!
We had a great weekend. Did mommy cry this weekend? Um... of course. But like I said, not only am I pregnant but I cry often anyways so that isn't a big deal.
Saturday-
Johnny had a visitor come by to wish him well and give him a present. A year or more ago we started using one of our client's teenage daughters as a baby sitter. She is a senior now and such a sweet girl. Her mom is a nurse and for now her plan is to go into nursing as well. They were so sweet and offered to baby sit for Johnny (mother and daughter) sometime so John and I could go out on a date. I am definitely going to take them up on it! Johnny was thrilled with his new toy, a bubble making Lightening McQueen! Soon after we had Grandma, Granddaddy and Miss Susan (a baby sitter we often use and have for 2 years) come by to see what lunch time routine for Johnny would be. I prepared them by telling them that sometimes he still says "no" and even gets a little whimpery but he will get over the shot as soon as we are done with it. Johnny showed me! He didn't even flinch for his shot, she just sat there like an angel and turned me into a liar. Good for him! I was so proud of him. It really seemed to make everyone feel much better about possibly administering these shots for Johnny one day.
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| Johnny's Special Diabetes Pen |
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| Practicing giving me a shot |
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| You can see in his eyes he isn't 100% recovered but he is so much better. |
Johnny loved having the visitors, and was sad to see them go. A short time after I got a message from a friend who was free and looking to visit. I am so used to being alone Saturdays since John works and most my Mommy friends are with their husbands, so I was happy to meet this friend and her daughter at a local park. (Thank you for the Starbucks if you are reading this, friend!) Nothing like a girl friend, fresh air, iced vanilla latte, and feeding the ducks to recharge the batteries. We went during snack time so I let Johnny eat his snack in the car on our way there. Lesson learned... feeding the ducks was a little difficult because Johnny wanted to eat the bread. So, next time we feed the ducks, I just need to make bread Johnny's snack or bring something more tempting for him to eat at the same time. The whole day Johnny's numbers ran high, but it didn't stress me out. At this point I have confirmed with his pediatrician and his Endo team that is normal, planned, expected, and safe. But the numbers were higher than the numbers that put me on edge and ruined my day just a week ago.
Sunday- Johnny woke up in a great mood! For the first time this week he seemed to eat close to normal portions. He didn't want pancakes (aka bread triple dipped in eggs/cinnamon), he wanted chicken and yogurt (very common lunch) for breakfast. I was happy to make it for him. He did drink 2 cups of milk, but hes a toddler and milk can only be had at meals. After a little relaxing at home, John, Johnny and I went to our local park to feed the ducks again... this time I brought a snack for him to eat too.
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| My 2 favorite ducks this day... yes they got more bread than the rest. |
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| "Duck Bread" |
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| 90 Calorie Fiber One Bar = Candy Bar |
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| "Quack" with a mouth full! |
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| He needs his sun glasses. |
In the end, we spend about 2.5 hours at the park today... it was a nice break for all of us. (By the way, I snagged some awesome hand me down equipment for Jocelyn from this friend, THANKS!)
When we got home, mommy had to get some business work taken care of so Daddy was given the job of distracting the monkey so I could try to "focus." Daddy did a great job and turned our entire upstairs landing into a blanket fort. Johnny helped bring all the pillows that he could find in the house. The filled it with every book Johnny could reach. I couldn't stand it, I had to join them for a while. We all read books to each other and lounged on the pillows. (I am so annoyed that I didn't take even 1 picture!) When snack time came I offered Johnny oranges and to my surprise said yes, and a bigger surprise is that he ate them! Pre T1D he ate them often, but since the hospital all this kid wants to eat is bread, crackers or similar... this was the first fruit he actually ate in a week. I finished my business finally and by then it was time for dinner. My hubby did our grocery shopping with Johnny in tow yesterday (yes to give me a break), and while he was there picked up some foods to grill today. He grilled us a fantastic and simple meal of pork chops, pineapple, and asparagus. It was such a great day that after eating the three of us and the dogs headed to the back yard to relax and play. Beautiful day!!
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| No, he isn't wearing pants... thats how we save on diapers. With out them he goes 100% in the Potty. With them he goes 100% of the time in the diapers. Its my backyard... its fine. :) |
Thank you to everyone who visited, called, texted, emailed, and facebooked us this weekend. Feeling connected and not alone has really helped me personally. I want all of you to know, that even the one sentence messages help. Thank you all!
For anyone who may just be diagnosed, every day gets better. Hang in there!
Sunday, March 18, 2012
Lowering the Bar
Every day has a hard moment, but so did every day before T1D (Type 1 Diabetes). Every day has a hard moment for all parents. The only difference is perspective and what I consider a hard moment... the bar is a little lower now is all. There are days I let a tantrum slide, I let a little flash of anger slide, when I would have put him in time out instead I hold him and tell him I understand that he was frustrated. I used to worry about behavior in public more, now I let a lot of outbursts go.
Like every parent will tell you, you have to pick your battles. Right now I care less about manners and tantrums then about cooperating for finger pricks and insulin shots. I can tell frustration from being mean, and I let frustration slide. We are back in pull ups full time and I don't even care (this used to be a huge deal to me). TV is on his shows often these days. Its partly because it distracts him from hunger and asking for food, and partly because it give me a break to clean up, write here, look up information, record readings, make grocery list, and just otherwise organise myself in ways I never worried about before.
Maybe I am wrong but lowing the bar in my opinion is good for Johnny too. After all it isn't just me that is adjusting. He is in a big way. I don't think cutting him some slack for a while is going to do any major harm, or turn him into a brat. I think a little extra time to relax with a movie on gives him some mental/emotional relief too. I think letting a frustration outburst go unpunished for a little while but still acknowledging that they happen is okay for a bit. After all, I want him to express feelings and not feel that he has to keep them in... and right now feelings of frustration are pretty common and justified.
But lowering the bar for things to be grateful for and celebrate is equally important. I stop a lot more often than I used to and just be with him, play with him, listen to him. I might get the broom out to sweep and when he takes it from me to help, I let him now. I used to just try to distract him so I could get it done fast... but not this week. I am happy he is feeling well enough to try to help. Seeing Johnny "read" a book (you know, repeat a story from memory while he turns pages), is so rewarding but I think it was something I took for granted before. I sit with him at the table for every meal and snack, something I should have always done... but didn't. I just want to be with him, and I want him to really KNOW that I want to be there with him.
Take time (just today even) to lower your bar for your kids, one day wont hurt. Let something go with out a time out, instead discuss the feelings behind it. Lower the bar for what your kid has to do to impress you, make an extra effort to show them in ways they understand how much you love them. You can do the sweeping tomorrow.
Like every parent will tell you, you have to pick your battles. Right now I care less about manners and tantrums then about cooperating for finger pricks and insulin shots. I can tell frustration from being mean, and I let frustration slide. We are back in pull ups full time and I don't even care (this used to be a huge deal to me). TV is on his shows often these days. Its partly because it distracts him from hunger and asking for food, and partly because it give me a break to clean up, write here, look up information, record readings, make grocery list, and just otherwise organise myself in ways I never worried about before.
Maybe I am wrong but lowing the bar in my opinion is good for Johnny too. After all it isn't just me that is adjusting. He is in a big way. I don't think cutting him some slack for a while is going to do any major harm, or turn him into a brat. I think a little extra time to relax with a movie on gives him some mental/emotional relief too. I think letting a frustration outburst go unpunished for a little while but still acknowledging that they happen is okay for a bit. After all, I want him to express feelings and not feel that he has to keep them in... and right now feelings of frustration are pretty common and justified.
But lowering the bar for things to be grateful for and celebrate is equally important. I stop a lot more often than I used to and just be with him, play with him, listen to him. I might get the broom out to sweep and when he takes it from me to help, I let him now. I used to just try to distract him so I could get it done fast... but not this week. I am happy he is feeling well enough to try to help. Seeing Johnny "read" a book (you know, repeat a story from memory while he turns pages), is so rewarding but I think it was something I took for granted before. I sit with him at the table for every meal and snack, something I should have always done... but didn't. I just want to be with him, and I want him to really KNOW that I want to be there with him.
Take time (just today even) to lower your bar for your kids, one day wont hurt. Let something go with out a time out, instead discuss the feelings behind it. Lower the bar for what your kid has to do to impress you, make an extra effort to show them in ways they understand how much you love them. You can do the sweeping tomorrow.
Saturday, March 17, 2012
Focus
Lets talk about my focus, or my lack of focus.
When I was a teen and young adult, I was on top of everything. I was never that kid who "forgot" an assignment, or to clean my room, or my work schedule. I never wrote anything down. I got As in almost every class... except Spanish... eh. I gave presentations with out ever practicing them even though my teachers always advised to "practice, practice, practice" and I always aced them. I could formulate my flow of thoughts quickly and could convey them smoothly to others. I kept track of countless concepts, tasks, and ideas.
At 21 I was head assistant at a single subject private school that offered high school math classes and tutoring from basic math through calculus. I had 25 some odd tutors that I managed from their schedules to their performance. I loved it, it was easy and natural for me. I later learned that I wasn't a good manager as far as relationships with the staff went, eh... but for my first time... at least things ran smoothly.
I moved to Texas, and in 9 months was married to John... no pregnancy or anything, it was just "right." I was an executive assistant to a very well off and successful entrepreneur. He was wonderful to work for, but demanded the best. Because I could deliver and meet his expectations he was very good to me. He taught me so much about business. Both my parents are entrepreneurs, but who listens to their parents? Working with him validated much of what my parents always drilled into me about life and how to conduct myself. The 2 years I spent there I accomplished more than I ever thought a 25 year old college drop out could. It was stressful and demanding, and scary, but I loved it. I could organize and keep track of dozens of projects and give input on each at a moments notice. My focus at that job was superb.
With my new confidence in my ability to achieve goals and meet deadlines I opened up my first business that had a physical location, instead of the online ideas I tried in the past. It was a huge task, and I did it alone mostly. A year later I have a thriving little business with 5 full time staff including my husband, and I was pregnant.
Why does mother nature find it funny to kill all focus when you are pregnant? I couldn't keep anything straight. I forgot deadlines, paid bills late, messed up work, things that I had never done before. I didn't have a "system" for many things because I just did them before. I didn't need systems. I spent some time while pregnant creating systems for work that could be followed by anyone; when I felt they were in place I stopped working at the location, and stayed home.
Now as a mother of a 2.9 year old, my focus was starting to return. It wasn't anything like the focus of the woman who started my business but I wasn't the total mess that I was just after Johnny was born. I could actually function, I figured out systems for my home life and while they are not perfect... they work. I added a 2nd business and even though I didn't have the focus like I did with the first one; I was able to grow the business's annual sales, and cash flow in just the first year from a distance. So that gets a little credit.
Now that Johnny has T1D. I am back to almost ZERO focus. Well that isn't totally true. I am focused on carbs, insulin ratios, BG readings, injection sites, symptoms of high and low blood sugar, and meal schedules. Other than a food log and BG/Insulin log the rest is internal and no one sees all the wheels that are constantly turning. I can't even remember what I used to think about. I spend time on a few T1D support boards, and the stories I read educate me and scare me at the same time. Mostly the stories about how fast and unexpectedly blood sugars have fallen to dangerous levels with their kids. All of this is always in the back of my mind, but it creeps its way to the front often.
This week I took Johnny to a play date and lunch with some of my favorite mamas. We all have kids Johnny's age and some of them have a 2nd little one. This was the first outing we had other than the pharmacy or grocery store since we got home from the hospital. I was prepared, but nervous. I had Johnny's goodie bag of lancets, meter, test strips, insulin pen, extra tips, alcohol wipes, skittles and juice for a quick fix to a low, his emergency injection if he has a seizure, fast acting glucose gel, in addition to the normal supplies or pull ups, change of clothes, snack, and sippy. (God help me try to leave the house when we have a newborn to pack up for too.) We arrive and while it isn't a normal time to test his BG, I do anyways for peace of mind when he starts running wild. I want to know where his BG starts at so it doesn't get low. 447... so I'm pretty sure we wont have a problem going below 80, but now my brain is thinking about how high 447 is and how annoying it is that it is never in the range the doctors told me to look for. But we go inside anyways and meet our friends. We are at an indoor warehouse that is full of enormous bounce houses, slides and obstacle courses... perfect to turn my 3 year old loose in. We have typical 3 year old problems on top of the T1D still. Immediately after we walk in I kneel down to take off his shoes and Johnny wets his pants and it runs down his leg, into his socks, and all over the carpet. I take him to the restroom and clean him up, change his clothes, and take a deep breath. We go back and find our friends. The kids are playing and us moms are talking. They are all so sweet to me and supportive. We are talking but those thoughts about low blood sugar start working their way to the front of my brain again... As Johnny plays I start to worry about some of the bounce houses. Some have areas I can't see as a parent, I wonder how long I should let him out of my sight before I worry that his blood sugar has dropped and he is unable to get out on his own. Then I realize I missed part of the conversation... I try to catch up but I am unaware of exactly what is being talked about or what I agreed to or ignored while my brain was somewhere else. I do this often in the 60 minutes we are there. Worrying about different things, unable to focus on conversation. I am not able to think of new things to drive the conversation either, I just keep thinking about symptoms of low BG and how I could get to Johnny if needed. After the hour of play we decide to go to lunch. I take Johnny back to the car and check his BG again, 300ish... okay good to know. He played really really hard and it is still high, but safe. I get a voicemail about a business matter, its important to my pre T1D but now I just am annoyed and don't care. I force myself to return the call and then when I hang up drive to lunch. As I stand in line I only focus on the children's menu and panic that they do not have chicken nuggets, I know Johnny would eat those and how to count the carbs. Before I know it the lady at the counter is calling "next" and the guy behind me tells me TWICE that is is my turn to order... geesh. I panic and order Johnny the pizza (I know he will eat it but carbs can be a huge range) and chocolate milk. She asks if I would like anything else and I realize I didn't get myself anything. I literally order the first thing I see on the menu. I take our number card, my drink and go sit with our friends. Conversation at the lunch table was much like the play date... we are talking but I am thinking about checking blood, recording it, counting carbs (thank you calorie king), how much did he eat, did he drop any, oh no he finished his milk before the pizza came, do I have juice, I hope he lets me give him his insulin here. I want to chat, I NEED that outlet, but I have nothing much other than T1D to talk about. I try to listen about other topics, and I am interested in them... but I just can't focus on what is being said. One of the ladies has lost a TON of weight this past year and was telling me about her goal weight and... for the life of me I can't remember what she said. So now I wonder did she ever finish her story? Did she tell me and I had no reaction? Did she stop mid story and I didn't notice? I just feel like such a bad friend. How many other conversations went like that and I just don't remember. Johnny finishes his meal, we do the injection... its easier than I expected. I relax a little and eat my sandwich. Soon we go home and I am pleased that we did it. I don't really notice that I wasn't present until later when I try to recall what we talked about... its hit and miss. I can't remember.
Same for texts, emails, and voice mails. I forget to respond, or I think of the response in my head and assume I sent it. I just can't focus.
A friend stopped by with her kiddo yesterday. I know she was trying to be there for me and let me vent if needed. But I was so distracted by Johnny's behavior that I couldn't even hold a conversation in my own home. I have no clue how much she noticed. At one point I wanted to just cry and tell her that I am so out of it I can't even tell anyone that I am out of it... but I couldn't and soon I was distracted anyways.
The thing is, I only notice this when I am around others and am expected to act like I used to. I just can't right now. Trust me I want to... but I don't know how to just yet. I am sure I will, its only been a week. Like bringing home a newborn, this is an adjustment period and I can't focus on much of anything else, even though I want to. I just have to tell myself that like a newborn there will be a point when it becomes my normal and I will be able to hold a conversation that doesn't revolve around Johnny's T1D. Until then, if I space out... I am sorry, pinch me and bring me back!
When I was a teen and young adult, I was on top of everything. I was never that kid who "forgot" an assignment, or to clean my room, or my work schedule. I never wrote anything down. I got As in almost every class... except Spanish... eh. I gave presentations with out ever practicing them even though my teachers always advised to "practice, practice, practice" and I always aced them. I could formulate my flow of thoughts quickly and could convey them smoothly to others. I kept track of countless concepts, tasks, and ideas.
At 21 I was head assistant at a single subject private school that offered high school math classes and tutoring from basic math through calculus. I had 25 some odd tutors that I managed from their schedules to their performance. I loved it, it was easy and natural for me. I later learned that I wasn't a good manager as far as relationships with the staff went, eh... but for my first time... at least things ran smoothly.
I moved to Texas, and in 9 months was married to John... no pregnancy or anything, it was just "right." I was an executive assistant to a very well off and successful entrepreneur. He was wonderful to work for, but demanded the best. Because I could deliver and meet his expectations he was very good to me. He taught me so much about business. Both my parents are entrepreneurs, but who listens to their parents? Working with him validated much of what my parents always drilled into me about life and how to conduct myself. The 2 years I spent there I accomplished more than I ever thought a 25 year old college drop out could. It was stressful and demanding, and scary, but I loved it. I could organize and keep track of dozens of projects and give input on each at a moments notice. My focus at that job was superb.
With my new confidence in my ability to achieve goals and meet deadlines I opened up my first business that had a physical location, instead of the online ideas I tried in the past. It was a huge task, and I did it alone mostly. A year later I have a thriving little business with 5 full time staff including my husband, and I was pregnant.
Why does mother nature find it funny to kill all focus when you are pregnant? I couldn't keep anything straight. I forgot deadlines, paid bills late, messed up work, things that I had never done before. I didn't have a "system" for many things because I just did them before. I didn't need systems. I spent some time while pregnant creating systems for work that could be followed by anyone; when I felt they were in place I stopped working at the location, and stayed home.
Now as a mother of a 2.9 year old, my focus was starting to return. It wasn't anything like the focus of the woman who started my business but I wasn't the total mess that I was just after Johnny was born. I could actually function, I figured out systems for my home life and while they are not perfect... they work. I added a 2nd business and even though I didn't have the focus like I did with the first one; I was able to grow the business's annual sales, and cash flow in just the first year from a distance. So that gets a little credit.
Now that Johnny has T1D. I am back to almost ZERO focus. Well that isn't totally true. I am focused on carbs, insulin ratios, BG readings, injection sites, symptoms of high and low blood sugar, and meal schedules. Other than a food log and BG/Insulin log the rest is internal and no one sees all the wheels that are constantly turning. I can't even remember what I used to think about. I spend time on a few T1D support boards, and the stories I read educate me and scare me at the same time. Mostly the stories about how fast and unexpectedly blood sugars have fallen to dangerous levels with their kids. All of this is always in the back of my mind, but it creeps its way to the front often.
This week I took Johnny to a play date and lunch with some of my favorite mamas. We all have kids Johnny's age and some of them have a 2nd little one. This was the first outing we had other than the pharmacy or grocery store since we got home from the hospital. I was prepared, but nervous. I had Johnny's goodie bag of lancets, meter, test strips, insulin pen, extra tips, alcohol wipes, skittles and juice for a quick fix to a low, his emergency injection if he has a seizure, fast acting glucose gel, in addition to the normal supplies or pull ups, change of clothes, snack, and sippy. (God help me try to leave the house when we have a newborn to pack up for too.) We arrive and while it isn't a normal time to test his BG, I do anyways for peace of mind when he starts running wild. I want to know where his BG starts at so it doesn't get low. 447... so I'm pretty sure we wont have a problem going below 80, but now my brain is thinking about how high 447 is and how annoying it is that it is never in the range the doctors told me to look for. But we go inside anyways and meet our friends. We are at an indoor warehouse that is full of enormous bounce houses, slides and obstacle courses... perfect to turn my 3 year old loose in. We have typical 3 year old problems on top of the T1D still. Immediately after we walk in I kneel down to take off his shoes and Johnny wets his pants and it runs down his leg, into his socks, and all over the carpet. I take him to the restroom and clean him up, change his clothes, and take a deep breath. We go back and find our friends. The kids are playing and us moms are talking. They are all so sweet to me and supportive. We are talking but those thoughts about low blood sugar start working their way to the front of my brain again... As Johnny plays I start to worry about some of the bounce houses. Some have areas I can't see as a parent, I wonder how long I should let him out of my sight before I worry that his blood sugar has dropped and he is unable to get out on his own. Then I realize I missed part of the conversation... I try to catch up but I am unaware of exactly what is being talked about or what I agreed to or ignored while my brain was somewhere else. I do this often in the 60 minutes we are there. Worrying about different things, unable to focus on conversation. I am not able to think of new things to drive the conversation either, I just keep thinking about symptoms of low BG and how I could get to Johnny if needed. After the hour of play we decide to go to lunch. I take Johnny back to the car and check his BG again, 300ish... okay good to know. He played really really hard and it is still high, but safe. I get a voicemail about a business matter, its important to my pre T1D but now I just am annoyed and don't care. I force myself to return the call and then when I hang up drive to lunch. As I stand in line I only focus on the children's menu and panic that they do not have chicken nuggets, I know Johnny would eat those and how to count the carbs. Before I know it the lady at the counter is calling "next" and the guy behind me tells me TWICE that is is my turn to order... geesh. I panic and order Johnny the pizza (I know he will eat it but carbs can be a huge range) and chocolate milk. She asks if I would like anything else and I realize I didn't get myself anything. I literally order the first thing I see on the menu. I take our number card, my drink and go sit with our friends. Conversation at the lunch table was much like the play date... we are talking but I am thinking about checking blood, recording it, counting carbs (thank you calorie king), how much did he eat, did he drop any, oh no he finished his milk before the pizza came, do I have juice, I hope he lets me give him his insulin here. I want to chat, I NEED that outlet, but I have nothing much other than T1D to talk about. I try to listen about other topics, and I am interested in them... but I just can't focus on what is being said. One of the ladies has lost a TON of weight this past year and was telling me about her goal weight and... for the life of me I can't remember what she said. So now I wonder did she ever finish her story? Did she tell me and I had no reaction? Did she stop mid story and I didn't notice? I just feel like such a bad friend. How many other conversations went like that and I just don't remember. Johnny finishes his meal, we do the injection... its easier than I expected. I relax a little and eat my sandwich. Soon we go home and I am pleased that we did it. I don't really notice that I wasn't present until later when I try to recall what we talked about... its hit and miss. I can't remember.
Same for texts, emails, and voice mails. I forget to respond, or I think of the response in my head and assume I sent it. I just can't focus.
A friend stopped by with her kiddo yesterday. I know she was trying to be there for me and let me vent if needed. But I was so distracted by Johnny's behavior that I couldn't even hold a conversation in my own home. I have no clue how much she noticed. At one point I wanted to just cry and tell her that I am so out of it I can't even tell anyone that I am out of it... but I couldn't and soon I was distracted anyways.
The thing is, I only notice this when I am around others and am expected to act like I used to. I just can't right now. Trust me I want to... but I don't know how to just yet. I am sure I will, its only been a week. Like bringing home a newborn, this is an adjustment period and I can't focus on much of anything else, even though I want to. I just have to tell myself that like a newborn there will be a point when it becomes my normal and I will be able to hold a conversation that doesn't revolve around Johnny's T1D. Until then, if I space out... I am sorry, pinch me and bring me back!
Friday, March 16, 2012
My 2.9 year old is stonger than I am.
Yes he is a 2.9 year old. My baby can't be 3, and technically he won't be for two more weeks... so I am holding off as long as possible.
Okay... maybe I am wrong and I should call him a 3 year old now. But the other half of this title is 100% true.
Johnny is stronger than me.
I still cry at night... or in the car... or any time I am alone and think about how different his life is going to be than what I planned. Most kids turn out different than how parents plan, I know this... but sometimes I wish it was because of his choice to be different than because his body screwed up. Like maybe he makes the choice to move away or drop out of college senior year and never finish that Applied Mathematics degree... (that is what I did that was probably not in the vision for my parents when I was 3). But this, daily injections, constant monitoring of blood, the numbers, the counting, the planning... every single day of his life is a matter of life and death now. I also cry for the opposite reason too! He is ALIVE! We caught it before any brain damage occurred, he is happy, there is a treatment, he can be socially normal (I say "can", because between my family and my husband's family... ya just never know), he is capable of playing sports, he is capable of being the head of his class, he can be just like every other kid... except for the constant blood monitoring and injections. Did you see how quickly my moods shift?. I am sad and grateful all at once, at all times of the day. Johnny doesn't cry anymore about it.
Johnny is stronger than me.
He doesn't wish things were like 2 weeks ago. He accepts it and is moving on. There are lots of things that occupy his mind instead: dinosaurs; throwing Bernadette's ball; finding things to flush down the toilet; playing with horses; when will we go to the zoo next; birthday parties; and today's was the best... he wanted to go to the beach. I didn't have the heart to tell him we live about 7 hours from the closest beach. He has already accepted this new life. He uses it to his advantage... sneaky little man! He uses it as a bargaining tool. For example:
Johnny: "Hey, I have an idea!" (so cute, his favorite phrase!) "Let's eat pancakes!"
Me: "Honey, its time to go take a bath and go to bed. I will make you pancakes in the morning after you go night night."
Johnny: "No, no night night," in a super sweet voice. Then "Hey, I have an idea! Pokey and THEN pancakes," with a super huge grin.
Yes, my 3 year old offered to trade a "pokey" aka checking his blood sugar for pancakes at bed time. The old mom would have made him pancakes, after all... what kind of mom lets her kid go to bed hungry? The kind that has to keep him alive with insulin is your answer. We are on an eating schedule to keep blood sugars stable... bedtime pancakes are not on the schedule. Which sucks for him, because as soon as that sweet little boy went to bed, Mommy ate 3-5 (who's counting) oreos and milk. Which brings me to my next point.
Johnny is stronger than me.
Food is addictive. My brother and I were talking about how eating can stimulates the same parts of the brain that crack will. I am addicted to food, you can look at me and see my addiction. My husband is addicted to food, you just can't see it (yet). We have two different addictions, but addictions none the less. 2 weeks ago Johnny was addicted to food. Not to the level that myself or my husband is, but he HAD to have a sippy of juice or chocolate milk at all times (diluted but still). If we put nothing but water in it he wouldn't drink it, he would whine about it, be fussy and miserable to be around. A few days before we went to the hospital I took a stand and said only water sippies from now on. If he wanted juice or milk he had to sit at the table and drink from a cup. Even with Diabetes (increased thirst) he didn't drink the water ever. I think that is one of the reasons he got as sick as he did when he did. He wasn't flushing the Ketones out anymore. Well, obviously we don't have juice or chocolate milk sippies anymore. Johnny gets water sippies, or diluted sugar free drinks occasionally. He has had to stop his food addiction and is over it in a week. I have been struggling with my food addiction for something like 12 years now... with every excuse in the book. I may have written the book actually. My current excuse is "Jocelyn wants it." Of course I know it isn't true! Of course I know it is an excuse. I also know that socially people will tend to leave me alone to eat my 3-5 oreos if that is my excuse instead of "I'm fat, what is another 3-5 oreos going to do?"
Yes, Johnny is stronger than me. If that is all he ever does in life, I will always admire him and be proud of him. He is at 3 years old the kind of person I strive to be. I will always tell him so, and one day he might actually believe me.
Now, I am off to make this brave little man the pancakes I promised him last night.
Okay... maybe I am wrong and I should call him a 3 year old now. But the other half of this title is 100% true.
Johnny is stronger than me.
I still cry at night... or in the car... or any time I am alone and think about how different his life is going to be than what I planned. Most kids turn out different than how parents plan, I know this... but sometimes I wish it was because of his choice to be different than because his body screwed up. Like maybe he makes the choice to move away or drop out of college senior year and never finish that Applied Mathematics degree... (that is what I did that was probably not in the vision for my parents when I was 3). But this, daily injections, constant monitoring of blood, the numbers, the counting, the planning... every single day of his life is a matter of life and death now. I also cry for the opposite reason too! He is ALIVE! We caught it before any brain damage occurred, he is happy, there is a treatment, he can be socially normal (I say "can", because between my family and my husband's family... ya just never know), he is capable of playing sports, he is capable of being the head of his class, he can be just like every other kid... except for the constant blood monitoring and injections. Did you see how quickly my moods shift?. I am sad and grateful all at once, at all times of the day. Johnny doesn't cry anymore about it.
Johnny is stronger than me.
He doesn't wish things were like 2 weeks ago. He accepts it and is moving on. There are lots of things that occupy his mind instead: dinosaurs; throwing Bernadette's ball; finding things to flush down the toilet; playing with horses; when will we go to the zoo next; birthday parties; and today's was the best... he wanted to go to the beach. I didn't have the heart to tell him we live about 7 hours from the closest beach. He has already accepted this new life. He uses it to his advantage... sneaky little man! He uses it as a bargaining tool. For example:
Johnny: "Hey, I have an idea!" (so cute, his favorite phrase!) "Let's eat pancakes!"
Me: "Honey, its time to go take a bath and go to bed. I will make you pancakes in the morning after you go night night."
Johnny: "No, no night night," in a super sweet voice. Then "Hey, I have an idea! Pokey and THEN pancakes," with a super huge grin.
Yes, my 3 year old offered to trade a "pokey" aka checking his blood sugar for pancakes at bed time. The old mom would have made him pancakes, after all... what kind of mom lets her kid go to bed hungry? The kind that has to keep him alive with insulin is your answer. We are on an eating schedule to keep blood sugars stable... bedtime pancakes are not on the schedule. Which sucks for him, because as soon as that sweet little boy went to bed, Mommy ate 3-5 (who's counting) oreos and milk. Which brings me to my next point.
Johnny is stronger than me.
Food is addictive. My brother and I were talking about how eating can stimulates the same parts of the brain that crack will. I am addicted to food, you can look at me and see my addiction. My husband is addicted to food, you just can't see it (yet). We have two different addictions, but addictions none the less. 2 weeks ago Johnny was addicted to food. Not to the level that myself or my husband is, but he HAD to have a sippy of juice or chocolate milk at all times (diluted but still). If we put nothing but water in it he wouldn't drink it, he would whine about it, be fussy and miserable to be around. A few days before we went to the hospital I took a stand and said only water sippies from now on. If he wanted juice or milk he had to sit at the table and drink from a cup. Even with Diabetes (increased thirst) he didn't drink the water ever. I think that is one of the reasons he got as sick as he did when he did. He wasn't flushing the Ketones out anymore. Well, obviously we don't have juice or chocolate milk sippies anymore. Johnny gets water sippies, or diluted sugar free drinks occasionally. He has had to stop his food addiction and is over it in a week. I have been struggling with my food addiction for something like 12 years now... with every excuse in the book. I may have written the book actually. My current excuse is "Jocelyn wants it." Of course I know it isn't true! Of course I know it is an excuse. I also know that socially people will tend to leave me alone to eat my 3-5 oreos if that is my excuse instead of "I'm fat, what is another 3-5 oreos going to do?"
Yes, Johnny is stronger than me. If that is all he ever does in life, I will always admire him and be proud of him. He is at 3 years old the kind of person I strive to be. I will always tell him so, and one day he might actually believe me.
Now, I am off to make this brave little man the pancakes I promised him last night.
Wednesday, March 14, 2012
Lows and Highs
Everyone has been preparing me that I am going to completely lose it soon. I really don't see that happening, but it might. Sure I cried a lot the other day, but is crying for me really that uncommon? No. I cry if I drink, tell a friend I miss them, hear someone say something nice about me, or hold a staff meeting and tell them how much I appreciate them. Plus I am pregnant... so I think I am crying a pretty normal amount for me. Plus crying makes me feel better, not worse. I think the tears make people worried that I am getting worse, but the reality is they don't mean anything other than at that moment I needed a good cry.
Lows:
Arguing in front of Johnny with my husband John... but I told you all about that. Reading horror stories online about other kids with diabetes... don't read those! The emotional fatigue I have by the end of the day, even on a good day. Telling the bank teller Johnny can't have the lollipop, and though he was nice about it, I could tell he was annoyed. The grocery checker asking what was wrong with Johnny (while he is going completely crazy locked in the little car part of my cart banging around and yelling, happy but looked nuts). I wanted to say, "His blood sugar is well over 400 right now which can make anyone agitated and hyper." Instead I barely whisper, "Nothing," and leave as fast as I can push my cart. Then there is when my little man is hungry or frustrated. That is still the lowest part of my days.
Highs:
We are Johnny is always high right now... but my his doctors want him high instead of low. (I am working on letting this be Johnny's disease, not mine) They are worried about this being the "Honeymoon" phase, which means that his pancreas might still turn back on here and there before it stops for good. If it does occasionally work he will basically be getting too much insulin from both his pancreas and his injections and experience low blood sugar which is far more dangerous.
But there are other highs:
Lows:
Arguing in front of Johnny with my husband John... but I told you all about that. Reading horror stories online about other kids with diabetes... don't read those! The emotional fatigue I have by the end of the day, even on a good day. Telling the bank teller Johnny can't have the lollipop, and though he was nice about it, I could tell he was annoyed. The grocery checker asking what was wrong with Johnny (while he is going completely crazy locked in the little car part of my cart banging around and yelling, happy but looked nuts). I wanted to say, "His blood sugar is well over 400 right now which can make anyone agitated and hyper." Instead I barely whisper, "Nothing," and leave as fast as I can push my cart. Then there is when my little man is hungry or frustrated. That is still the lowest part of my days.
Highs:
But there are other highs:
Tuesday, March 13, 2012
What a difference a week makes
Life is wonderful.
But my world is different than it was 7 days ago... still wonderful but different.
(This is a long entry... after all... it is 7 days)
7 days ago- As I was driving my son to his Mother's Day Out program I noticed in the rear view mirror that he was staring off into space... very distant. I figure, "its early... I had to wake him up... he didn't eat much breakfast... the car is soothing." We arrive and walk into his classroom. He seems very upset to be there, which is completely unlike is normal behavior. I decide to take him back home, after all it is flu season, maybe he is at the very beginning of the flu before typical symptoms kick in. I also realize he has been sleeping a lot... "Yes, he is going to get the flu," I think.
At home he spends the day watching cartoons on the couch. He doesn't eat much, and takes 2 naps.
However, he never gets sick and he never gets a fever. After naps he wakes up and plays before settling back down on the couch for more cartoons. He also goes to bed extremely fussy an hour before usual time.
6 days ago- My little man wakes up as usual, and joins us downstairs. He asks for juice like every other morning and watches a cartoon while I straighten up the house and see my husband off to work. When he is out the door I decide to sit with Johny since he obviously isn't feeling well. He cuddles up to me and falls asleep. Yes he fell back asleep after being awake for about 90 minutes.
I decide to take him in to his pediatrician. About 2 hours later we arrive. His doctors office is right next to my business that my husband runs so I pop in and steal him away to come with us. I know I am going to ask for a blood panel and don't think I can hold Johnny while they draw blood. I don't know what in my gut tells me to have blood taken. As a mother I just know he doesn't look right, grey sunken eyes, purplish splotchy skin, my chunky monkey's ribs and spine started showing, extra sleepy... I guess that is why I wanted blood work done. Withing minutes of getting into the exam room with the nurse the doctor runs in and yells for a nebulizer. By now Johnny's lips are blue/purple and he is awake but not there. He is weak and floppy. To my doctors surprise his blood oxygen levels are fine and his lungs are clear. After further examination they question me about Johnny's access to Tylenol. I get defensive instantly! Of course I keep drugs out of reach of Johnny! Then it hits me, I just had a tooth removed a week or 2 prior and had it on my night stand. I can't remember if I put it away. OMG, I did this to him! After checking his oxygen level again our doctor tells us to drive him straight to the Emergency Room of Children's Medical Center of Dallas. They told us not to stop back at the house and not to stop in any drive-thrus just go straight there. I thought this was strange since we pass multiple hospitals to get to Children's, but off we go. Johnny falls asleep again in the car. We get settled in the ER and start the process of getting IVs in a 2 year old. After about 30 minutes of tears and struggle IV ports are in and Johnny is back asleep in Daddy's arms.
Less than an hour goes by. The doctors come in and I just know they are going to tell me its a Tylenol overdose. I know social services is going to come and interrogate me and think of me as one of those bad parents. I wonder if my husband will blame me too, I wonder what his family will think of me, I wonder if my mommy friends will judge me. Then I wonder if they will take him away from me! I am crying hard. I brace myself for the news that I poisoned my child. Then they give us the news....
His blood glucose is over 400. It means nothing to me. Even though I know that it should be around 150... I am still waiting for them to tell me that is a sign of Tylenol poisoning. They continue on, we are going to run some more test but it is a pretty clear case of Type 1 Diabetes, aka Juvenile Diabetes. My husband and I are in shock. My dad has type 2 diabetes, so I am a little familiar. I cry harder. "Is this our fault?" I ask. They explain that unlike type 2, type 1 is an autoimmune disease. Our son's body attacked its pancreas and will no longer produce insulin. They also tell me that there was nothing I could have done cause it or prevent it. I have about 10 seconds of relief that is isn't my fault. Then memories of kids with diabetes I grew up with flash in my mind. They had to leave class for shots, they didn't attend field trips, they couldn't have the cupcakes parents brought in for birthday parties... we all knew they were "weird." They explain things like Ketones, how Johnny has a lot of them, how they affect the body, and just how sick he is. They transfer us to the ICU.
The ICU was a sad place to be. No happy parents in there. Walking to his room, I would look in at the other rooms and turn away. Kids with tubes hooked up to machines. Parents in hospital scrubs and face masks hovering over their child... I didn't look into other rooms again. Johnny was sleeping now. My husband and I have a little couch in his room to sit and gather our thoughts. We are grateful. We are grateful that Diabetes is treatable, that Johnny will be able to go home and live life. We decide not to dwell on what living with Diabetes means for now, but to just focus on how lucky we are and how many parents would trade places with us in a heart beat. The rest of the night goes by in a blurr. Testing each hour, lots of information, grandparents visit, husband goes home to pack me a bag, more family is called, friends start messaging with support... before I know it the day is over, I don't know how but I have to try to sleep. I am pregnant after all, Johnny is asleep, its late. The hours go by, and each hour he is poked and checked and I am updated.
5 days ago- By morning, I have a total of 2 hours of sleep under my belt but it doesn't matter. Johnny did so good over night that they are going to let him eat breakfast!
A little while later, Johnny gets a special delivery from Aunt Carol, Mimi, and Papa. 5 balloons attached to a stuffed horse! I actually was surprised to see how happy it made him. He was thrilled and so was I.
At some point that day we were transferred to the Endocrinology floor of the hospital where our real exposure to diabetes began. They took him off his IV of insulin and switched us to shots. There was lots of education for Mom and Dad about carb counting, injections, dosages, schedules, and so on. But the best part was when Johnny wanted to get out of bed and go for a walk (and take his horse and balloons).
4 days ago- We seem to be in the clear. Ketones are reduced but not clear so an IV of fluids stays in. Johnny has learned that he does like grilled chicken, sugar free jello, and crystal light.
As parents we start practicing checking his Blood Sugar and injections. Neither goes very well. He has to be held down by parent 1 while parent 2 does the test or injection. We are frazzled, he is frustrated. Johnny is asking for food every 5 minutes. He eats his meals and 5 minutes later wants more. He is upset that unlike before we have to tell him to wait. As parents we are trying to hold on to all that we are grateful for. We are telling each other how it is going to get better, even though neither of us believes it when we say it. We are going over future events in fine detail, like we have to figure it out that day. "Trick or Treating, sleepovers, camping, boy scouts, holidays with family, travel, day care, school, college"... the list is endless. After hours of discussing ideas, we say we will deal with each as we get to them. Grandma comes and sits with Johnny in his room so Mommy and Daddy can have a meal together in the cafeteria.
3 days ago- Mommy is a mess. Maybe it is the lack of sleep. Maybe it is the pregnancy hormones. Maybe it is that my perfect baby now has a life long disease that will separate him from his peers and make him feel different. Maybe it is that deep down I wonder if it is because I was obese and pregnant with him. It doesn't matter what the doctors tell me, I live an unhealthy life style and I wonder how long it will take science to realize that it is my fault, that I did this to him. I wonder if I have already set Jocelyn up for the same fate. I wonder if we should stop having children. However, today is the day we are going home. Johnny has cleared his ketones, he is off his IVs. Mommy and Daddy know how to draw up and give insulin. We know our new schedule, we can do it alone. After a $170 copay visit to the pharmacy (didn't get everything) we head home for dinner. Johnny is constantly asking for food. It breaks my heart to hear my baby tell me he is hungry. I guess his body has been starving for at least a week but most likely longer. I tell my husband that the doctors said to feed him like normal, there isn't anything off limits at meal times, we are just supposed to dose him accordingly. So I make my baby's favorite, cheese pizza. I also cut him up some strawberries and give him milk. When he asks for his 3rd slice my husband says no and to eat his strawberries. This began world war 3 in our house. My husband doesn't feel we should throw all parenting out the window for diabetes (he is right). I feel its his first day home and he is starving literally and let him fill up so he stops begging and crying for food (I am right). We actually lose it and yell at the table in front of Johnny. Johnny has to stop us, he yells "stop it guys, stop yelling!" OMG, bad parents of the year award. He knows exactly what we are yelling about and asks for something other than pizza. I however do not want to get up and make something else just cause so I give him the 3rd slice... and another 1/2 after that. Later John and I resolve our issues. We are both struggling with this in different ways. I want to nurture and comfort. John wants to treat him normal like he is no different. In the end, we both just want him to be happy and feel loved.
2 days ago- Bad day. Constant hunger. Constant asking for food.
Constant high blood sugar readings. Both parents are on edge. Johnny has had it with his new rules and routine. He doesn't want to be poked. He doesn't want a shot. He doesn't want to eat chicken or jello. He doesn't want to wait for crackers until it's snack time. He doesn't want to lose control of anything else in his life. Its a bad day full of tears from him and mommy in private. At bedtime, he doesn't want the bath or the shampooing of the hair, and when its all over he sits in my arms, wet and whimpering for 10 full minutes. He has had it, he doesn't want to have diabetes and I don't blame him.
1 day ago- Something changed in just one day. At lunch time Johnny actually told my husband which finger to poke to check his sugar. He counted to 3 for us, said "ouch, all done!" He seemed to go longer without asking for more food. He seemed to understand that waiting didn't mean no. At dinner not only did he repeat his bravery with checking his sugar, he also came over to me after and told me where to give his shot and held still with out tears for the injection. What a good sport! My husband also got a hold of our doctor about the high numbers all weekend and the constant hunger and they changed our ratio for 2 of his 3 meals. I would never have guessed the day before that this day would have gone so well and smoothly!
Let me say it again, my world is still wonderful. It is different but wonderful. I have my baby at home with me. There is treatment. He will be able to do anything in life. When I start getting depressed I have to remind myself that is selfish, this is Johnny's disease and it is just my job to lift him up and be there for him. He doesn't want me to be depressed, he doesn't deserve a sad mom ever! Today is my birthday. I have everything I want and it is a great day.
But my world is different than it was 7 days ago... still wonderful but different.
(This is a long entry... after all... it is 7 days)
7 days ago- As I was driving my son to his Mother's Day Out program I noticed in the rear view mirror that he was staring off into space... very distant. I figure, "its early... I had to wake him up... he didn't eat much breakfast... the car is soothing." We arrive and walk into his classroom. He seems very upset to be there, which is completely unlike is normal behavior. I decide to take him back home, after all it is flu season, maybe he is at the very beginning of the flu before typical symptoms kick in. I also realize he has been sleeping a lot... "Yes, he is going to get the flu," I think.
6 days ago- My little man wakes up as usual, and joins us downstairs. He asks for juice like every other morning and watches a cartoon while I straighten up the house and see my husband off to work. When he is out the door I decide to sit with Johny since he obviously isn't feeling well. He cuddles up to me and falls asleep. Yes he fell back asleep after being awake for about 90 minutes.
His blood glucose is over 400. It means nothing to me. Even though I know that it should be around 150... I am still waiting for them to tell me that is a sign of Tylenol poisoning. They continue on, we are going to run some more test but it is a pretty clear case of Type 1 Diabetes, aka Juvenile Diabetes. My husband and I are in shock. My dad has type 2 diabetes, so I am a little familiar. I cry harder. "Is this our fault?" I ask. They explain that unlike type 2, type 1 is an autoimmune disease. Our son's body attacked its pancreas and will no longer produce insulin. They also tell me that there was nothing I could have done cause it or prevent it. I have about 10 seconds of relief that is isn't my fault. Then memories of kids with diabetes I grew up with flash in my mind. They had to leave class for shots, they didn't attend field trips, they couldn't have the cupcakes parents brought in for birthday parties... we all knew they were "weird." They explain things like Ketones, how Johnny has a lot of them, how they affect the body, and just how sick he is. They transfer us to the ICU.
The ICU was a sad place to be. No happy parents in there. Walking to his room, I would look in at the other rooms and turn away. Kids with tubes hooked up to machines. Parents in hospital scrubs and face masks hovering over their child... I didn't look into other rooms again. Johnny was sleeping now. My husband and I have a little couch in his room to sit and gather our thoughts. We are grateful. We are grateful that Diabetes is treatable, that Johnny will be able to go home and live life. We decide not to dwell on what living with Diabetes means for now, but to just focus on how lucky we are and how many parents would trade places with us in a heart beat. The rest of the night goes by in a blurr. Testing each hour, lots of information, grandparents visit, husband goes home to pack me a bag, more family is called, friends start messaging with support... before I know it the day is over, I don't know how but I have to try to sleep. I am pregnant after all, Johnny is asleep, its late. The hours go by, and each hour he is poked and checked and I am updated.
My husband arrives that morning and that inspires Johnny to play with a few toys on his bed. I couldn't be more grateful for my husband than I am at that moment. To see my baby with tubes in both arms and hands play with a tiny plastic dinosaur fills my heart and I know he is going to be okay.
3 days ago- Mommy is a mess. Maybe it is the lack of sleep. Maybe it is the pregnancy hormones. Maybe it is that my perfect baby now has a life long disease that will separate him from his peers and make him feel different. Maybe it is that deep down I wonder if it is because I was obese and pregnant with him. It doesn't matter what the doctors tell me, I live an unhealthy life style and I wonder how long it will take science to realize that it is my fault, that I did this to him. I wonder if I have already set Jocelyn up for the same fate. I wonder if we should stop having children. However, today is the day we are going home. Johnny has cleared his ketones, he is off his IVs. Mommy and Daddy know how to draw up and give insulin. We know our new schedule, we can do it alone. After a $170 copay visit to the pharmacy (didn't get everything) we head home for dinner. Johnny is constantly asking for food. It breaks my heart to hear my baby tell me he is hungry. I guess his body has been starving for at least a week but most likely longer. I tell my husband that the doctors said to feed him like normal, there isn't anything off limits at meal times, we are just supposed to dose him accordingly. So I make my baby's favorite, cheese pizza. I also cut him up some strawberries and give him milk. When he asks for his 3rd slice my husband says no and to eat his strawberries. This began world war 3 in our house. My husband doesn't feel we should throw all parenting out the window for diabetes (he is right). I feel its his first day home and he is starving literally and let him fill up so he stops begging and crying for food (I am right). We actually lose it and yell at the table in front of Johnny. Johnny has to stop us, he yells "stop it guys, stop yelling!" OMG, bad parents of the year award. He knows exactly what we are yelling about and asks for something other than pizza. I however do not want to get up and make something else just cause so I give him the 3rd slice... and another 1/2 after that. Later John and I resolve our issues. We are both struggling with this in different ways. I want to nurture and comfort. John wants to treat him normal like he is no different. In the end, we both just want him to be happy and feel loved.
2 days ago- Bad day. Constant hunger. Constant asking for food.
1 day ago- Something changed in just one day. At lunch time Johnny actually told my husband which finger to poke to check his sugar. He counted to 3 for us, said "ouch, all done!" He seemed to go longer without asking for more food. He seemed to understand that waiting didn't mean no. At dinner not only did he repeat his bravery with checking his sugar, he also came over to me after and told me where to give his shot and held still with out tears for the injection. What a good sport! My husband also got a hold of our doctor about the high numbers all weekend and the constant hunger and they changed our ratio for 2 of his 3 meals. I would never have guessed the day before that this day would have gone so well and smoothly!
Let me say it again, my world is still wonderful. It is different but wonderful. I have my baby at home with me. There is treatment. He will be able to do anything in life. When I start getting depressed I have to remind myself that is selfish, this is Johnny's disease and it is just my job to lift him up and be there for him. He doesn't want me to be depressed, he doesn't deserve a sad mom ever! Today is my birthday. I have everything I want and it is a great day.
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