A couple of weeks ago I started a new job. So far, so great:) I am working in the same school as my son, as the Family Liaison Worker/Community Connector. Being in the same building as Ezekiel has simplified my life a bit and has also given me peace of mind. In my short time there I have created a school website (www.sites.google.com/site/kelseycommunity) and a school Facebook page. I have also organized my office and started a walking school bus. In the coming weeks I hope to start connecting with students through a lot of the upcoming special events. I also have less responsibility than my old job so I also feel like a big weight has been lifted from my shoulders.
Of course nothing is perfect, and one of the downfalls of my new position is starting 45 minutes earlier than in my previous job. One of Ezekiel's teachers asked him how he likes having his mom work at the school and he replied "It's good except that we have to get up too early and get to work." And so at 7:30 every morning the alarm rings, which then gives us 45 minutes to get ready and get to work (the first thing I do is the walking school bus which basically involves meeting a group of kids and walking them to school so he just comes with me). With my old job I never set an alarm as he would usually be up sometime around 8:00, and on the very rare occasion he would sleep until 8:30, we were a wee bit late. But now every weekday morning just after 7:30 am, I am waking him up with lots of protesting on his part. I don't blame him. He's tired. I'm tired too.
Enter the weekend. Freedom. A chance to sleep as long as we want. And what happens? My boy decides the saying 'The early bird catches the worm' must be true (only he must think worm means candy). Yes that is correct. 7:00 am on Saturday morning and he is not only wide awake, but dragging me out of bed. A complete role reversal from the previous 5 days during the week (okay 4 this last week). Sunday we made it all the way to 7:15. But guaranteed tomorrow it will be me dragging him out of bed.
I can't help but wonder what is up with that. I mean he is so tired all week and here's me feeling bad that I have to wake him up then all I want is a and extra maybe hour of sleep and he gets up extra early! But then I think back to my own childhood and remember that I was the same. Always sleeping until the last second during the week (and often late for school) and up like a shot on Saturday morning. In fact I remember waking even earlier than 7. I remember having to get up that early if I wanted to watch the Wizard of Oz cartoon (anyone else remember that?).
But in my defense, we didn't have cartoon networks with cartoons around the clock. We didn't have DVD players or even VCRs. If something came on TV on one of the few channels available that was when we had to watch it. There was the Flintstones at lunch time and some shows right after school, but Saturday morning was the big cartoon day. If you slept in you missed the whole thing and the only thing I remember being on after cartoon fest was fishing shows. And golf.
I always figured I was rising early just for the cartoons, but Ezekiel can watch cartoons any time. (and has yet to turn the TV on this morning). Maybe it was more than that. Maybe it is the freedom. No school, no schedule. Time to watch cartoons but more importantly time to play. Time to be a kid. And after a whole weekend of playing I guess a kid is pretty tired. And who wants to get up when you just have to go to school anyway? Surely there are no worms in school. Those can only be caught on the weekend:)
Sunday 29 May 2011
Thursday 19 May 2011
Sleep, no I never get enough...
As Riley Armstrong so eloquently put it "Sleep, no I never get enough. Always wakin up tired. Sleep, no I never get enough. If I don't show up I might get fired..."
(if you are not familiar with the song, you can listen to it here: http://www.youtube.com/watch?v=Zl0Zvw6hXMQ)
Actually I have been wanting to write this blog all week, but guess what? That's right I was just too tired. And I started a new job on Monday, so I definitely didn't want to not show up and take my chance on the firing thing. It was the best of weeks, it was the worst of weeks.
My new job has been going very well and it is a big relief to be in the school with Ezekiel and makes helping him at lunch or other times he may need it so much easier. I got a lot accomplished in my first few days, despite the lack of sleep and I think that they are happy with my work. The negatives are the earlier start time and the fact that I don't have time to go and get my daily Timmy's anymore (partly due to the earlier start time and partly due to the lack of sleep thing. Losing another 1/2 hour of sleep isn't worth the coffee).
This is how my week started: 8:00pm Sunday and Ezekiel's pump site falls off in the bathtub. (We had just put that site on earlier that day and it was working just fine). So we change the site. I am heading to bed and I check Ezekiel's Blood sugar to find he is 18.8! I double check and it is indeed around that number. I suspect the site, but he has gone up like that randomly before so it may or may not be the site. I check for ketones, which are negative so I bolus a correction and wait. An hour later he is around the same. At this point I should have changed the site, but there were still no ketones so i corrected again and waited. I guess I wanted to be sure it was the site (partly I think because we were trying a new type of infusion set and didn't want to see the 2 samples down the drain within 8 hours). An hour (or was it an hour and a half?) later he was 25, thirsty and had wet the bed. I gave an injection and changed the site. 2 hours later he was coming down but was still quite high. Corrected again. Checked again an hour later. He was coming down nicely. In between all these checks I didn't sleep very much at all as I was stressed/worried. The next morning I started my new job.
He was pretty stable the rest of the week, so I was only up once a night to check him, but between trying to catch up from the first night and having to get up earlier and an unusually busy week (there just so happened to be more things going on in the evenings this week) I am pretty zombie-like as I type this.
And of course as a nice ending to the week, Ezekiel's pump malfunctioned. Poor guy was up late while I was on the phone to Medtronic who is sending out a new one. But in the meantime? Ezekiel refused shots and I managed to clear the button error, but none of the buttons on the pump are working. Luckily we do have a remote. I have opted to leave the pump on him and hope for the best. Of course I won't be able to fall asleep very easily and I will need to keep getting up to check him, just to be sure (which I would also have to do if we went to shots in the meantime as I don't even know what he would need for Lantus, so either way a good night's sleep is out of the question). If the pump appears not to be working I will need to put a call in to the children's diabetes doctor on call to figure out what to do. But hopefully if I don't touch the buttons it will work out fine and hopefully Medtronic is telling the truth that the new pump will be here tomorrow. I guess if it all works out that way it won't be so bad as we will have a brand new pump instead of the one we have now which has a scratched up screen. But boy, am I going to need one big coffee in the morning!
(if you are not familiar with the song, you can listen to it here: http://www.youtube.com/watch?v=Zl0Zvw6hXMQ)
Actually I have been wanting to write this blog all week, but guess what? That's right I was just too tired. And I started a new job on Monday, so I definitely didn't want to not show up and take my chance on the firing thing. It was the best of weeks, it was the worst of weeks.
My new job has been going very well and it is a big relief to be in the school with Ezekiel and makes helping him at lunch or other times he may need it so much easier. I got a lot accomplished in my first few days, despite the lack of sleep and I think that they are happy with my work. The negatives are the earlier start time and the fact that I don't have time to go and get my daily Timmy's anymore (partly due to the earlier start time and partly due to the lack of sleep thing. Losing another 1/2 hour of sleep isn't worth the coffee).
This is how my week started: 8:00pm Sunday and Ezekiel's pump site falls off in the bathtub. (We had just put that site on earlier that day and it was working just fine). So we change the site. I am heading to bed and I check Ezekiel's Blood sugar to find he is 18.8! I double check and it is indeed around that number. I suspect the site, but he has gone up like that randomly before so it may or may not be the site. I check for ketones, which are negative so I bolus a correction and wait. An hour later he is around the same. At this point I should have changed the site, but there were still no ketones so i corrected again and waited. I guess I wanted to be sure it was the site (partly I think because we were trying a new type of infusion set and didn't want to see the 2 samples down the drain within 8 hours). An hour (or was it an hour and a half?) later he was 25, thirsty and had wet the bed. I gave an injection and changed the site. 2 hours later he was coming down but was still quite high. Corrected again. Checked again an hour later. He was coming down nicely. In between all these checks I didn't sleep very much at all as I was stressed/worried. The next morning I started my new job.
He was pretty stable the rest of the week, so I was only up once a night to check him, but between trying to catch up from the first night and having to get up earlier and an unusually busy week (there just so happened to be more things going on in the evenings this week) I am pretty zombie-like as I type this.
And of course as a nice ending to the week, Ezekiel's pump malfunctioned. Poor guy was up late while I was on the phone to Medtronic who is sending out a new one. But in the meantime? Ezekiel refused shots and I managed to clear the button error, but none of the buttons on the pump are working. Luckily we do have a remote. I have opted to leave the pump on him and hope for the best. Of course I won't be able to fall asleep very easily and I will need to keep getting up to check him, just to be sure (which I would also have to do if we went to shots in the meantime as I don't even know what he would need for Lantus, so either way a good night's sleep is out of the question). If the pump appears not to be working I will need to put a call in to the children's diabetes doctor on call to figure out what to do. But hopefully if I don't touch the buttons it will work out fine and hopefully Medtronic is telling the truth that the new pump will be here tomorrow. I guess if it all works out that way it won't be so bad as we will have a brand new pump instead of the one we have now which has a scratched up screen. But boy, am I going to need one big coffee in the morning!
Friday 6 May 2011
A Little Bit Longer
Earlier today I came accross a short video of Nick Jonas talking about his role of National Chairperson for the JDRF walk.https://www.facebook.com/l.php?u=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DOqwiAi5awlc%26feature%3Dfeedrec_grec_index&h=14521
So his song a little bit longer has been going through my head. A little bit longer. I hope that is all we have to wait for a cure for this stupid disease. I say stupid because it is. Just ask those moms who have lost children to it, some even recently. Just ask the 2 moms i was chatting with earlier; one dealing with really low blood sugars, the other dealing with really high blood sugars. Just ask me. Every day truly is a winding road and no 2 days are the same when you are dealing with type 1 diabetes, no matter how hard you work to make them the same. Some of us have given this disease nicknames such as "randombetes" (because sometimes the blood sugars can seem so random despite doing everything the same) or "stupidbetes" because as I have just said it is stupid.
Yes, we have insulin. Yes, I am eternally grateful for it and to Banting and Best for their discovery. But let's face it. It is not a cure. As I start to think about planning for our JDRF walk (which we hold here in September), I have been thinking I should write something on how insulin is not a cure. Today I came accross another mom's blog which is about this very subject. I don't think I could say what she has said any better, so I will just direct you to what is already written:
http://betabuddies.blogspot.com/2011/05/not-even-close.html#comment-form
I would like to add one thing as this mom talks about all the needles. We are on a pump. Yes, we have less needles. Yes, there are advantages. But this too, is not a cure. The pump does not regulate things the way an artificial pancreas one day will. It is not magic. It is another method of giving insulin. And in some ways it is more work as you really do have to stay on top of things.
But hopefully with some more research and support we will only need his pump a little bit longer....
So his song a little bit longer has been going through my head. A little bit longer. I hope that is all we have to wait for a cure for this stupid disease. I say stupid because it is. Just ask those moms who have lost children to it, some even recently. Just ask the 2 moms i was chatting with earlier; one dealing with really low blood sugars, the other dealing with really high blood sugars. Just ask me. Every day truly is a winding road and no 2 days are the same when you are dealing with type 1 diabetes, no matter how hard you work to make them the same. Some of us have given this disease nicknames such as "randombetes" (because sometimes the blood sugars can seem so random despite doing everything the same) or "stupidbetes" because as I have just said it is stupid.
Yes, we have insulin. Yes, I am eternally grateful for it and to Banting and Best for their discovery. But let's face it. It is not a cure. As I start to think about planning for our JDRF walk (which we hold here in September), I have been thinking I should write something on how insulin is not a cure. Today I came accross another mom's blog which is about this very subject. I don't think I could say what she has said any better, so I will just direct you to what is already written:
http://betabuddies.blogspot.com/2011/05/not-even-close.html#comment-form
I would like to add one thing as this mom talks about all the needles. We are on a pump. Yes, we have less needles. Yes, there are advantages. But this too, is not a cure. The pump does not regulate things the way an artificial pancreas one day will. It is not magic. It is another method of giving insulin. And in some ways it is more work as you really do have to stay on top of things.
But hopefully with some more research and support we will only need his pump a little bit longer....
Tuesday 3 May 2011
A Lesson in Trust
Yesterday morning part of a bible verse kept going through my head 'Trust in the Lord with all your heart...' (now, it is not my intent to be preaching in my blog, but with my faith being apart of who I am, these things just may come up from time to time). Round and round it went. Now, I am no stranger to trust. When Ezekiel was diagnosed I had to trust that I would be able to do whatever I needed to do to look after him (yes, even give scary needles!). Every day I have to trust that after I have done everything I know how to do my boy will be okay. That after we go to sleep he will wake up. But yesterday there was something new. Something exciting yet scary. A decision was made, but was it the right one?
For a long time i knew that I would be unable to continue on the path I was on: working full time in a somewhat stressful management position, getting up to check blood sugars in the night, going back and forth to the school to give Ezekiel his insulin at lunch or other times as needed. It was all becoming too much. I could not quit working without putting our family in financial trouble. (there is a difference between trusting and just being foolish. I think quitting and having no income would have been the latter.)
Then something happened. A job came up at Ezekiel's school. A job with the same number of hours I have now. A job that is very well suited to me. And a job with what I think will be a lot less stress. And a job with summers off. I could hear angels singing 'Hallelujah!' in the background as I read the ad. I knew the pay would be a couple of dollars an hour less than I make now and the summer layoff could be a bit tricky (EI is not the fastest most well paying benefit). But I decided to apply. I figured if I wasn't meant to have the job I wouldn't get it. Simple.
During the interview I made sure there was a benefit package, which there is (diabetes supplies are not cheap and our Pharmacare deductible is very high, but that is a blog for another day). And then i waited. Sure enough I got the job! Woo-hoo! I sadly gave my notice at my current job, which has been a great place to work and they have always been very good to me and very understanding when it comes to Ezekiel. Then I went to fill in the forms for my new job. That is when I became uncertain if I was doing the right thing.
First of all I discovered that it actually pays $4 an hour less than my current job as the salary was previously based on a different number of hours then what I will be working. Secondly I found out that because the position relies on funding, it is usually classified as a term position, which means while I can tap into the pension and life insurance benefits, I would not be eligible for the drug plan. But I had already resigned and until this moment I was certain this was the right thing to do.
I began to figure out how we would ever be able to fork out hundred's of dollars for Ezekiel's supplies. I started shopping for cheaper infusion sets, reminding myself I can claim the expenses on our income tax, and wondering if we could somehow use less test strips. Then I began to think, 'what if pay days are different? what if they hold a week back?' Trust. Trust in the Lord with all your heart.... I am doing the right thing, aren't I?
One of the school division forms needed my banking information so i had to take it home to fill it out. Upon bringing it in to the division office, I was told that they will give me the rate of pay they had first told me and they will classify my position as permanent as long as I understand it is still reliant on the funding. This means I would be eligible for the drug plan. I was shocked (albeit pleasantly so). I decided while I was there to ask about pay day dates. Turns out they have the EXACT same pay schedule I have now so there will be zero interruption in my paychecks. WOW.
So while part of me is sad to leave my current position, I am excited and looking forward to a new adventure. And I know that I am doing what is right for me and my family. And I know everything turn out fine, great even, because I can trust in the Lord with all my heart <3
For a long time i knew that I would be unable to continue on the path I was on: working full time in a somewhat stressful management position, getting up to check blood sugars in the night, going back and forth to the school to give Ezekiel his insulin at lunch or other times as needed. It was all becoming too much. I could not quit working without putting our family in financial trouble. (there is a difference between trusting and just being foolish. I think quitting and having no income would have been the latter.)
Then something happened. A job came up at Ezekiel's school. A job with the same number of hours I have now. A job that is very well suited to me. And a job with what I think will be a lot less stress. And a job with summers off. I could hear angels singing 'Hallelujah!' in the background as I read the ad. I knew the pay would be a couple of dollars an hour less than I make now and the summer layoff could be a bit tricky (EI is not the fastest most well paying benefit). But I decided to apply. I figured if I wasn't meant to have the job I wouldn't get it. Simple.
During the interview I made sure there was a benefit package, which there is (diabetes supplies are not cheap and our Pharmacare deductible is very high, but that is a blog for another day). And then i waited. Sure enough I got the job! Woo-hoo! I sadly gave my notice at my current job, which has been a great place to work and they have always been very good to me and very understanding when it comes to Ezekiel. Then I went to fill in the forms for my new job. That is when I became uncertain if I was doing the right thing.
First of all I discovered that it actually pays $4 an hour less than my current job as the salary was previously based on a different number of hours then what I will be working. Secondly I found out that because the position relies on funding, it is usually classified as a term position, which means while I can tap into the pension and life insurance benefits, I would not be eligible for the drug plan. But I had already resigned and until this moment I was certain this was the right thing to do.
I began to figure out how we would ever be able to fork out hundred's of dollars for Ezekiel's supplies. I started shopping for cheaper infusion sets, reminding myself I can claim the expenses on our income tax, and wondering if we could somehow use less test strips. Then I began to think, 'what if pay days are different? what if they hold a week back?' Trust. Trust in the Lord with all your heart.... I am doing the right thing, aren't I?
One of the school division forms needed my banking information so i had to take it home to fill it out. Upon bringing it in to the division office, I was told that they will give me the rate of pay they had first told me and they will classify my position as permanent as long as I understand it is still reliant on the funding. This means I would be eligible for the drug plan. I was shocked (albeit pleasantly so). I decided while I was there to ask about pay day dates. Turns out they have the EXACT same pay schedule I have now so there will be zero interruption in my paychecks. WOW.
So while part of me is sad to leave my current position, I am excited and looking forward to a new adventure. And I know that I am doing what is right for me and my family. And I know everything turn out fine, great even, because I can trust in the Lord with all my heart <3
Sunday 1 May 2011
Mellow Yellow
As I write this I am pretty exhausted. Partly from staying up so late last night. Partly from today's activities. Among other things, we had a weiner roast in our backyard. We had a nice time- the 3 of us always enjoy a good bonfire, even though the wind was slightly cool. The sun was shining and spring is definately in the air.
Last weekend I had started painting our kitchen yellow. I managed to get about 3/4 of it finished and decided to save the rest of it for this weekend. Sunday evening after our nice weiner roast I had gotten things ready, but not started painting. So I end my weekend elbow deep in paint. As I write I am waiting for the paint to dry so that I can do the final coat/touch and put everything away (another late night it is!). As much as I dislike painting, I will love it when it is finished. It has already brightened our place up so much, which I think was needed.
Another thing that happened today is late afternoon my husband wanted to check Ezekiel's blood sugar because he had been running around the yard and he wanted to make sure he wasn't going low. That was fine, but Ezekiel made his dad promise that no matter how high his sugar was he would not freak out (as he has been known to do when high blood sugars show up) or even say anything. I thought this was strange since we were checking to make sure he wasn't low and we had no reason to suspect he would be high. And Ezekiel does not feel his highs. But sure enough the meter read 16. Double checked and 16 again. Shawn went outside to avoid saying anything.
Then the truth came out. It turns out Ezekiel knew he would be high because after church when there were Timbits on the back table, he had a few more than the 2 I bolused him for. He claims 10 more, but being only 6 and not likely actaully counting them I will never know. I was pretty surprised by this as we are pretty free with what he eats for this very reason. He knew I would have just bolused him (given him insulin through his pump) for said Timbits. Mellow. I managed to remain calm and thanked him for telling me and reminded him that if he just tells me what he is eating we can give him insulin and avoid the high blood sugar. But I remained calm. And Shawn did too. I am sure this won't be the last time we deal with this but for me the 16 is easier to take when I can know the cause. Unlike the 15 we had at bedtime (still the Timbits? Is he getting sick? Did we miss something he ate? Could his new site be not working? If it is his site would he not be higher? Are his socks on the wrong feet? Mellow...).
Yellow. What's this I hear? I believe it is the sound of paint drying. Paint that is drying and waiting for it's final coat. So to finish painting and hopefully get to some good sleeping. Not that diabetes allows for many good sleeps, but here's hoping!
Last weekend I had started painting our kitchen yellow. I managed to get about 3/4 of it finished and decided to save the rest of it for this weekend. Sunday evening after our nice weiner roast I had gotten things ready, but not started painting. So I end my weekend elbow deep in paint. As I write I am waiting for the paint to dry so that I can do the final coat/touch and put everything away (another late night it is!). As much as I dislike painting, I will love it when it is finished. It has already brightened our place up so much, which I think was needed.
Another thing that happened today is late afternoon my husband wanted to check Ezekiel's blood sugar because he had been running around the yard and he wanted to make sure he wasn't going low. That was fine, but Ezekiel made his dad promise that no matter how high his sugar was he would not freak out (as he has been known to do when high blood sugars show up) or even say anything. I thought this was strange since we were checking to make sure he wasn't low and we had no reason to suspect he would be high. And Ezekiel does not feel his highs. But sure enough the meter read 16. Double checked and 16 again. Shawn went outside to avoid saying anything.
Then the truth came out. It turns out Ezekiel knew he would be high because after church when there were Timbits on the back table, he had a few more than the 2 I bolused him for. He claims 10 more, but being only 6 and not likely actaully counting them I will never know. I was pretty surprised by this as we are pretty free with what he eats for this very reason. He knew I would have just bolused him (given him insulin through his pump) for said Timbits. Mellow. I managed to remain calm and thanked him for telling me and reminded him that if he just tells me what he is eating we can give him insulin and avoid the high blood sugar. But I remained calm. And Shawn did too. I am sure this won't be the last time we deal with this but for me the 16 is easier to take when I can know the cause. Unlike the 15 we had at bedtime (still the Timbits? Is he getting sick? Did we miss something he ate? Could his new site be not working? If it is his site would he not be higher? Are his socks on the wrong feet? Mellow...).
Yellow. What's this I hear? I believe it is the sound of paint drying. Paint that is drying and waiting for it's final coat. So to finish painting and hopefully get to some good sleeping. Not that diabetes allows for many good sleeps, but here's hoping!
A Windy Night...
Well, it is 2:00 am and the wind is howling. So what do I do? Decide to start a blog! Crazy right? Yup, but I am doing it anyway. The song Everyday is a Winding Road by Sheryl Crow was running through my head and I have to laugh at how true her song is, especially when I think of the lines 'Everybody gets high, everybody gets low.'. Only when she sings of getting high and low i don't think that she was referring to Blood Sugars. But indeed everyday in the life of one caring for a child with type 1 diabetes does seem to be a winding road and today has been no exception. And we definately see our share of both highs and lows. Today was more highs than lows, by the way. Plus my boy (Ezekiel) was non-stop hungry so I think we could be heading into a growth spurt.
In an effort to control all of these highs and lows we test Ezekiel's blood sugar many times a day. Get the meter ready. Blood Drop. Test. Beep. Sometimes high, Sometimes low. Sometimes perfect. Somedays all of the blood drops will result in perfect. Those are some great days. But most days will have at least one high or low in there some where. Somedays they are all high or all low or high and low. Blood Drop. Test. Blood Drop Test. How many drops of blood do I see in a day? At least 6. sometimes 10 or 12. If he is sick even more than that.
In order to keep his blood sugar within range we must carefully balance his carbohydrate intake with insulin. Of course exercise is part of that balance. A half hour of jumping on the trampoline can drop his sugar really fast. And then there are all the other factors: stress, illness, excitement, adreneline, nervousness, the weather, and the list goes on. This is what makes managing type 1 diabetes so tricky. The day the circus came to town he was very excited and his blood sugar was in the 20's most of the day. The day of his birthday party he was equally (if not more) excited and I was expecting him to be higher, but no, he was on the lower end that day. Sometimes he is high or low and I can never figure out why. Those are the hardest to deal with. I like to know why. To be able to exlpain, to rationalize, then fix it.
But it hasn't been all bad. That's right dealing with type 1 diabetes hasn't been all bad. There have been Blue Skies too. Sunny skies even. For one thing I have discovered a strength I didn't know I had. We found out Ezekiel has type 1 diabetes on valentine's day 2009. Ezekiel had been peeing A LOT. When I mentioned this to my nurse friend we were visiting that day she had said the D word which my own interenet research had pointed to. She had some urine test strips in her home and told me if I could get him to pee in a cup she could check his urine and if there was no sugar in his urnine perhaps it could be something else she can't think of. I thought 'Great, let's get him to pee in a cup and rule this out right now.'
Well, that certainly backfired. She dipped the strip in my son's urine and watching it she said 'I'm so sorry.' I could only say 'What?' 'He is large for glucose and positive for ketones.' she said. 'What does that even mean?' I ask (what the heck are ketones anyway, I don't think I had even heard of them before this in my life, even though my husband is also type 1). She told me that it could only mean he had diabetes.
The first words out of my mouth were 'But I can't give anyone a needle! I can't do this!' and then I cried. And she cried. Her daughter and I both always told her we could never be nurses like her because we could never give anyone a needle. Her daughter is Ezekiel's babysitter. That first week was so hard. But I did give a needle. I have given many needles. (and for the record my friend's daughter has given Ezekiel needles too!)I have since done a lot of things I would have never of thought I would be capable of.
Not only have I amazed myself, my boy has amazed me even more. He is my hero. I have seen him fight us and get angry at D, yes. But I have seen him be brave and become smart beyond his years. What 4 year old can even say 'carbohydrate'? At 5 when we needed him to finish eating his supper as we had given him insulin for it he would reason with us and say he could have something else to make up the carbs. And now at 6 he can bolus himself through his pump, hardly ever mixes up even the big 2 digit numbers and is starting to read the carbohydrates on food labels. And in the lunch room when other kids ask if it hurts to check his sugar he proudly says 'No.' (The girls at his school think he is brave too:)
And one of the best blue sunny sky to come out of this whole diabetes thing is friendships. Through this disease I have met some amazing people. Some have been in person, but most have only been online. Though we may not have ever met, we have laughed together, cried together, shared our hurts, anger, furstration and joys. We have even mailed things to each other. No one can truly understand what it is like to have a child with type 1 diabetes unless they live it. If you aren't in this situation I pray that you never will be. If you are then you know what I am talking about. This is the common thread that binds these friendships tight. From Inuvik, NWT to a little town near Boston, MA and many places in between (and even beyond) I have made some wonderful lasting friendships that I hope will last a lifetime, even though I hope diabetes doesn't. One day they will find a cure and I hope it will be in Ezekiel's lifetime. Then we can skip the Blood Drops and stick to the Blue Skies! Goodnight everyone.
In an effort to control all of these highs and lows we test Ezekiel's blood sugar many times a day. Get the meter ready. Blood Drop. Test. Beep. Sometimes high, Sometimes low. Sometimes perfect. Somedays all of the blood drops will result in perfect. Those are some great days. But most days will have at least one high or low in there some where. Somedays they are all high or all low or high and low. Blood Drop. Test. Blood Drop Test. How many drops of blood do I see in a day? At least 6. sometimes 10 or 12. If he is sick even more than that.
In order to keep his blood sugar within range we must carefully balance his carbohydrate intake with insulin. Of course exercise is part of that balance. A half hour of jumping on the trampoline can drop his sugar really fast. And then there are all the other factors: stress, illness, excitement, adreneline, nervousness, the weather, and the list goes on. This is what makes managing type 1 diabetes so tricky. The day the circus came to town he was very excited and his blood sugar was in the 20's most of the day. The day of his birthday party he was equally (if not more) excited and I was expecting him to be higher, but no, he was on the lower end that day. Sometimes he is high or low and I can never figure out why. Those are the hardest to deal with. I like to know why. To be able to exlpain, to rationalize, then fix it.
But it hasn't been all bad. That's right dealing with type 1 diabetes hasn't been all bad. There have been Blue Skies too. Sunny skies even. For one thing I have discovered a strength I didn't know I had. We found out Ezekiel has type 1 diabetes on valentine's day 2009. Ezekiel had been peeing A LOT. When I mentioned this to my nurse friend we were visiting that day she had said the D word which my own interenet research had pointed to. She had some urine test strips in her home and told me if I could get him to pee in a cup she could check his urine and if there was no sugar in his urnine perhaps it could be something else she can't think of. I thought 'Great, let's get him to pee in a cup and rule this out right now.'
Well, that certainly backfired. She dipped the strip in my son's urine and watching it she said 'I'm so sorry.' I could only say 'What?' 'He is large for glucose and positive for ketones.' she said. 'What does that even mean?' I ask (what the heck are ketones anyway, I don't think I had even heard of them before this in my life, even though my husband is also type 1). She told me that it could only mean he had diabetes.
The first words out of my mouth were 'But I can't give anyone a needle! I can't do this!' and then I cried. And she cried. Her daughter and I both always told her we could never be nurses like her because we could never give anyone a needle. Her daughter is Ezekiel's babysitter. That first week was so hard. But I did give a needle. I have given many needles. (and for the record my friend's daughter has given Ezekiel needles too!)I have since done a lot of things I would have never of thought I would be capable of.
Not only have I amazed myself, my boy has amazed me even more. He is my hero. I have seen him fight us and get angry at D, yes. But I have seen him be brave and become smart beyond his years. What 4 year old can even say 'carbohydrate'? At 5 when we needed him to finish eating his supper as we had given him insulin for it he would reason with us and say he could have something else to make up the carbs. And now at 6 he can bolus himself through his pump, hardly ever mixes up even the big 2 digit numbers and is starting to read the carbohydrates on food labels. And in the lunch room when other kids ask if it hurts to check his sugar he proudly says 'No.' (The girls at his school think he is brave too:)
And one of the best blue sunny sky to come out of this whole diabetes thing is friendships. Through this disease I have met some amazing people. Some have been in person, but most have only been online. Though we may not have ever met, we have laughed together, cried together, shared our hurts, anger, furstration and joys. We have even mailed things to each other. No one can truly understand what it is like to have a child with type 1 diabetes unless they live it. If you aren't in this situation I pray that you never will be. If you are then you know what I am talking about. This is the common thread that binds these friendships tight. From Inuvik, NWT to a little town near Boston, MA and many places in between (and even beyond) I have made some wonderful lasting friendships that I hope will last a lifetime, even though I hope diabetes doesn't. One day they will find a cure and I hope it will be in Ezekiel's lifetime. Then we can skip the Blood Drops and stick to the Blue Skies! Goodnight everyone.
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