Time sure does fly before you realize more of it has passed you by than you realized. Life just keeps moving so when Friday rolls around I am still stuck back on Wednesday. The JDRF Walk is fast approaching and it's time to start collecting the donations. This is the one time you realize how many kids (and adults) are affected by Type 1 Diabetes. And you know all we can do is plug away at finding a cure. I read tonight on a site that Diabetes takes 17-27 years off of your life. That's just wonderful news for a mom.........don't ya think? But some people are great inspirations and prove that living a healthy lifestyle is necessary and it can be done.
We have been making our transition over to Gluten-Free Food. Joshua, diagnosed in May with Celiac Disease is doing ok. The doctor says absolutely NO GLUTEN........to the point that we can't use the same toaster for him, the condiments have to be squeeze tops to avoid cross contamination and there is Joshua taking finger bites of food on the counter..................because he is hungry and doesn't get why he can't eat the same macaroni as his sister. Yet............he is completely loving his special food. It's like the hardest thing to teach your 4 year old he is allergic to "wheat". So for transitioning over we are doing ok...............but with learning food my husband and I find our opinion is that Celiac is harder.............diabetes was scarier. That is the difference. Food isn't scary.........................sticking needles in your child and being a full-time pancreas...............now THAT is scary. Needless to say.......................we are just now "functioning" with gluten free products. I got past the hump of not feeding him the wheat filled products and feeding him what he needs to eat................now I have to actually memorize and learn what brands everything is and where I get it.
Today Josh told me he didn't want the pump anymore. I asked him why and he said he just didn't want it. I asked him if he wanted to go back to the shots and he said no to that as well. I think he is having a day he is tired of diabetes. And you feel bad because you can't take it away for him. I think today he just wanted to be normal. I read in a book about two brothers where the mom described when they reached the year mark of her children having diabetes for some reason the kids mourn the fact they will never be "normal". The reality seems to hit them that this won't go away, it won't end and it is just how it is. We are going to be coming up on the year mark in August. I would love for people to post their anniversary stories here if you could. It would be interesting to know what
For now we will still be pumping it.
Send in your stories of your first anniversaries..............would live to hear the stories.
Thanks,
Michelle
Thursday, June 19, 2008
Thursday, June 5, 2008
Paralympics...........If They Can Do It So Can We!
The other night when it was just me and Joshua we decided to have a quiet night of TV after Daddy went to bed and rather then entertain his brain with the constant aggravating sound of Sponge Bob, (aggravating for me, completely humorous to Joshua), I decided to find something entertaining yet interesting enough he would actually sit long enough to hopefully fall asleep. I wanted to steal a few moments of quiet with him and not put him to bed just yet. Those are my favorite moments as a parent when you set the rituals aside and just indulge on breaking routine and enjoy the time. So as I scrolled through the television set looking for the right program I stopped on a program called "No Excuses." It was a documentary on the athletes from the Paralympics. The first shot was of a man skiing with one leg, his other leg obviously amputated. And then more shots came of other skiers, called sit-skiers ( I think). I mentioned to Joshua.."Wow, look at that man skiing with one leg." and so his questions began. "Why does he only have one leg?" and "what happened to his other leg?" and of course my answers were the same "I don't know, something happened to it and he lost his leg." I was very pleased that he asked the questions because I wanted an opportunity to show him that others suffered from things too, not just him. It is refreshing to know we now have the opportunity to show him the side of life where others are disadvantaged but they don't live like they are. So therefore he doesn't have to either. No child with diabetes does.
In a world of diabetes where your life revolves around your management system of that disease you forget that there are others out there suffering from things that are equal to or even worse than what you struggle with. I was blessed with, yes blessed, to watch this documentary because sometimes it's the reminders that save you from having a bad day. It feeds that place inside you where you need some comfort to get through your problems. It serves as an inspiration which is something everyone needs. Especially kids with diabetes. As we sat there, strong, athletic men and women who represent true courage were on the TV discussing how they became disabled, what life was like before becoming disabled and how they endured what they had to get to the olympics for disabled people. And you know I don't even like to define it as such..........."Olympics for disabled people" as if we set out to categorize the athletes based on their disability rather than their athletic ability. I was almost brought to tears, in fact I think I was at a few points in the documentary because I could completely relate to what they defined for themselves. Some athletes defined their amputations or paralyzed states as adjusting to a new way of life and having to gain a new sense of how they relate to the world and while our son Joshua still has his limbs entact and has his legs to walk...............the concept still felt the same. Also maybe in the back of our minds, we know that people with diabetes could at some point suffer their own amputations. That is a reality that comes with diabetes but you focus on managment and not what could happen down the road.
One female athlete discussed how her and her mom had never taken the time to go through the grieving process which I completely related to. The social worker we had upon diagnosis explained the grieving process to us and said it was normal to go through this because it was the loss of one type of life in exchange for a new one. And that is what we did experience. For us there were days where Ken would call home and I would be home falling apart for no apparent reason. I just had really bad days. And you know and can indentify that your going through the process of grieving but you can't really control it or change it. It is just a part of this process. And for Ken he was just angry about it, which the social worker explained for a man that was his normal process. For us as Joshua's parents this experience has bonded us for life. We share something more than just having a child together. We share this depth of understanding that emotionally connects us that no matter what we might be upset about, it doesn't compare to the needs of our child. Now we don't sweat the small stuff. And then we have to choose which big thing takes priority for that day. For the parents you find that your child, who is the one who this actually happened to, is the one who is teaching you about how to handle it rather than you being the one doing it. We are always amazed at how he copes with it when we are the ones struggling with it. I think that is the most amazing part. It's not the illness or disease, it's the amazing ability of how one handles it.
So how does all of this fit in for kids with diabetes? Because this is the kind of people who we should all cheer for. Not for their disability or chronic illness or out of sympathy or pity but simply to admire them because of all that they have been forced to overcome, endure and their abilities beyond the disabilities. I was amazed at how humble and wise these athletes are. I am amazed at a 3 year old who so willingly accepts numerous shots a day or lives with this annoying shaped beeper that keeps him alive and still retain a cheerful and happy disposition. It's as if you are watching people who are different not because of the fact they are disabled and their life is managed in a different manner than what non-disabled people have to do, they are different because they chose to embrace their disability and endure and handle life and not let their disability actually handicap them at all. They far surpassed the human humble factor and for exceeded any limits placed upon them. In fact...........I don't think they view themselves as having limits at all.
With that said I have another poem to share. It was actually written before we watched the documentary but it really fits this post.
You became my hero
When you handled lifes challenges
better than I ever could
You became my inspiration
When you moved beyond that challenge
and took it all in stride.
You became my friend
when you did this at the age of 3
You are a child full of wisdom
A child full of strength
You are a child blessed with happiness
Your spirit full of things Godly and great
And so it goes
You are my hero
With your infectious smile
You are my greatest inspiration
And you will be for a long, long while
Ok folks. Have a good diabetes day.
In a world of diabetes where your life revolves around your management system of that disease you forget that there are others out there suffering from things that are equal to or even worse than what you struggle with. I was blessed with, yes blessed, to watch this documentary because sometimes it's the reminders that save you from having a bad day. It feeds that place inside you where you need some comfort to get through your problems. It serves as an inspiration which is something everyone needs. Especially kids with diabetes. As we sat there, strong, athletic men and women who represent true courage were on the TV discussing how they became disabled, what life was like before becoming disabled and how they endured what they had to get to the olympics for disabled people. And you know I don't even like to define it as such..........."Olympics for disabled people" as if we set out to categorize the athletes based on their disability rather than their athletic ability. I was almost brought to tears, in fact I think I was at a few points in the documentary because I could completely relate to what they defined for themselves. Some athletes defined their amputations or paralyzed states as adjusting to a new way of life and having to gain a new sense of how they relate to the world and while our son Joshua still has his limbs entact and has his legs to walk...............the concept still felt the same. Also maybe in the back of our minds, we know that people with diabetes could at some point suffer their own amputations. That is a reality that comes with diabetes but you focus on managment and not what could happen down the road.
One female athlete discussed how her and her mom had never taken the time to go through the grieving process which I completely related to. The social worker we had upon diagnosis explained the grieving process to us and said it was normal to go through this because it was the loss of one type of life in exchange for a new one. And that is what we did experience. For us there were days where Ken would call home and I would be home falling apart for no apparent reason. I just had really bad days. And you know and can indentify that your going through the process of grieving but you can't really control it or change it. It is just a part of this process. And for Ken he was just angry about it, which the social worker explained for a man that was his normal process. For us as Joshua's parents this experience has bonded us for life. We share something more than just having a child together. We share this depth of understanding that emotionally connects us that no matter what we might be upset about, it doesn't compare to the needs of our child. Now we don't sweat the small stuff. And then we have to choose which big thing takes priority for that day. For the parents you find that your child, who is the one who this actually happened to, is the one who is teaching you about how to handle it rather than you being the one doing it. We are always amazed at how he copes with it when we are the ones struggling with it. I think that is the most amazing part. It's not the illness or disease, it's the amazing ability of how one handles it.
So how does all of this fit in for kids with diabetes? Because this is the kind of people who we should all cheer for. Not for their disability or chronic illness or out of sympathy or pity but simply to admire them because of all that they have been forced to overcome, endure and their abilities beyond the disabilities. I was amazed at how humble and wise these athletes are. I am amazed at a 3 year old who so willingly accepts numerous shots a day or lives with this annoying shaped beeper that keeps him alive and still retain a cheerful and happy disposition. It's as if you are watching people who are different not because of the fact they are disabled and their life is managed in a different manner than what non-disabled people have to do, they are different because they chose to embrace their disability and endure and handle life and not let their disability actually handicap them at all. They far surpassed the human humble factor and for exceeded any limits placed upon them. In fact...........I don't think they view themselves as having limits at all.
With that said I have another poem to share. It was actually written before we watched the documentary but it really fits this post.
You became my hero
When you handled lifes challenges
better than I ever could
You became my inspiration
When you moved beyond that challenge
and took it all in stride.
You became my friend
when you did this at the age of 3
You are a child full of wisdom
A child full of strength
You are a child blessed with happiness
Your spirit full of things Godly and great
And so it goes
You are my hero
With your infectious smile
You are my greatest inspiration
And you will be for a long, long while
Ok folks. Have a good diabetes day.
Sunday, June 1, 2008
And Into the Pool the Pump Went..........It Survived!
Hi everyone! And so it goes that with a pool goes extra care to see that it (the pump) doesn't end up in the pool. Water resistant does NOT mean waterproof. However water resistance is much better than no water resistance at all. Today while Mommy was working and Daddy was getting ready to get into the pool with the kids...........Daddy got a phonecall and told the kids to go ahead and get in while he stood there and so they did. And Joshua got in pump and all. We changed his "site" to the back side of him and so it literally was out of "sight" and out of mind. Attached to him all the time it becomes ONE with the body. So much that you forget to unhook the very small but expensive pumping action maching. And it amazingly survived. It did not drown. So for those that want to know what type of pump that was it was a Mini Medtronic, and we don't suggest anyone try this at home to see if your pump will survive too. God was simply on our side today and decided to give us a break so thank the good Lord we do not need to replace a pump.
Joshua had his last soccer game yesterday and he started with a low 73. Not too incredibly low however it was soccer where he runs up and down the field and he has never started off with that kind of number. He was always a bit high,which we intentionally cause becasue he runs it off . What I think I want to focus on today with the post is to find out who knows the best way to balance numbers when the kids play sports. Who out there can give me their experience and tell me what they do. I am interested in knowing so I can enjoy the sport and manage it from the sides with a little confidence rather than fear. So my goal is to find out how to manage those numbers from the sidelines whether it's just with gatorade or are you combining food with that as well. I know some of you do protein with carbs. But with the pump are you unhooking, and still doing carbs every 30 minutes. Or do you manage it all through the pump with no extra carbs? So if you can post what you know.......post it.
The JDRF walk is coming up soon in Cincinatti. Walk for a Cure!! They will eventually find one. And if it takes a long time.........these young kids keep getting smarter and smarter. Eventually someone will come up with something. Where there is a will there is a way.
For today however simply have a good diabetes day. Share your experiences with me........make eachother stronger.
Have a good diabetes day!! Sully
Joshua had his last soccer game yesterday and he started with a low 73. Not too incredibly low however it was soccer where he runs up and down the field and he has never started off with that kind of number. He was always a bit high,which we intentionally cause becasue he runs it off . What I think I want to focus on today with the post is to find out who knows the best way to balance numbers when the kids play sports. Who out there can give me their experience and tell me what they do. I am interested in knowing so I can enjoy the sport and manage it from the sides with a little confidence rather than fear. So my goal is to find out how to manage those numbers from the sidelines whether it's just with gatorade or are you combining food with that as well. I know some of you do protein with carbs. But with the pump are you unhooking, and still doing carbs every 30 minutes. Or do you manage it all through the pump with no extra carbs? So if you can post what you know.......post it.
The JDRF walk is coming up soon in Cincinatti. Walk for a Cure!! They will eventually find one. And if it takes a long time.........these young kids keep getting smarter and smarter. Eventually someone will come up with something. Where there is a will there is a way.
For today however simply have a good diabetes day. Share your experiences with me........make eachother stronger.
Have a good diabetes day!! Sully
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