Time............Heals All Wounds?

WOW!! Where have I been? It has been 5 months since I have published a post. I had a couple saved and will go back and update them but for now I have to get back on track with posting. So where have I been? You know I have been overcoming and adjusting. In the year and 3 months since Joshua was diagnosed our lives have totally transformed into such different paths and things from where we were prior to that really scary day. We moved in August (the one year mark for diagnosis), got settled, I started a new part time job, got completely involved in my new job maybe for sanity reasons........who the heck knows but it is interesting to where we were and where we are now. In the last 5 months since I have posted I really was adjusting to Celiac Disease on top of diabetes. That one threw us for a really big loop. So today as I write this, I am feeling the holiday spirit with Christmas fast approaching which is something I didn't really even recognize last year. I have to say that we are feeling good about where we have gotten with diabetes/celiac, we are feeling more confident with how we handle it and deal with it and we are stronger people now because of this last year.

I think that if I had to define what is different is it doesn't seem so dark like it did. The only way I can describe a life altering diagnosis to others is you feel stuck in a really dark place for awhile. It's a lonely place too. When I look back I have certain specific instances of time that something stands out for example when Joshua had his first low, when he got his pump, his first Halloween as a diabetic etc. but really to summarize my entire first year feels like this block of time that is a dark blur. It's as if I can go to a calendar and take a black marker and just blackout months of time where it was blurry and dark. You know when companies black out certain dates you aren't allowed to take a vacation? That is how my life feels, a big blackout with our diagnosis for awhile but we were certainly not on vacation for all those months of adjusting......of that I specifically remember. BUT...........there really is a but to all of this, there's a however, a on the other hand or even if you want to say on the other side of the token.... whichever way you want to phrase it.........there is truly light at the end of the tunnel. It just takes a while.
My message I really want to deliver to everyone is Yes there is light at the end of the tunnel and there is hope. The pain you do carry with you. It's a small little stab that eases but you will carry that little small twinge of "why?". You will always remember diagnosis, you will reflect on the 3 days in the hospital as agonizing acceptance because you have no choice but to accept this agonizing reality. It's a very surreal 3 days. You seem to have a difficult time catching up to the fact that just the day before life was moving along and then "what happened?". You will carry this sadness in your heart and memory bank because no matter what way you look at it your child has to do different things than the average person. "Will they handle it, or will they not? How does he/she feel about doing this?" So you are sad when you are with all the other children and you have to do a bloosugar check. It's a sadness we live with, but somehow just move forward knowing it. Your life consists of all these interruptions of BS checks, carb counting and injections. You don't ever get away from the reminders that are daily. And you don't ever get away from realizing you are now different. So how does anyone find light at the end of the tunnel in all of this dark stuff. It is dark. It is difficult. And no where is any of this easy. I know, I am living it. It is truly one of the hardest things I have ever had to face and adjust to.........so how did I find light at the end of the tunnel? On some days I am still searching.......but I find it in a simple thing called GRACE. I reflect on that feeling or thought when I am troubled and it lifts me up. The Websters definition for Grace is: b: a virtue coming from God b archaic : mercy , pardon c: a special favor : privilege d: disposition to or an act or instance of kindness, courtesy, or clemency e: a temporary exemption : reprieve3 a: a charming or attractive trait or characteristic b: a pleasing appearance or effect :
I think the thing that I focus most on in finding my own light at the end of our personal tunnel of darkenss is that if God has chosen for my child to have diabetes.......are we as parents or Joshua not the lucky ones that he was not chosen to bear much more than diabetes? Am I not lucky to still have my child with a life sentence of management and not a death sentence? My light rest in two facts. One.......I have proven I can do this and as hard as it is.........some mothers out there are caring for invalid children and unresponsive children, or how about those watching their children die a slow death of cancer? That is agonizing to live and I am not living that. I am possibly one of the lucky ones with that fact. I am coping and managing. The other fact is once you start to manage diabetes...........you realize you still have his life in your hands. It is simply minus a pancreas. There are healthy people with diabetes all around...........and it's them that give me hope for my child. We don't focus on the negative we focus on the positive. I have life and health for my child. My challenge is simply much much harder to manage then others. And that is the only place I or Josh is different. The only thing that should ever be different between your child and another is to simply say "his pancreas doesn't work" and it stops there.
So everyone.........find your blessings and dwell upon them because it those blessings that will be your salvation. But just remember the darkness is normal................and there really is light at the end of the tunnel. You just have to keep moving forward and you will eventually find it. All in due time.

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

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.

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

Swimming for the First time with a Pump

Many of you out there are much more experienced with swimming and diabetes so if you would like to offer your experiences here please feel free to do so. We are still fairly new to the pump so it was our first experience with the pump and swimming. As many of you know there are so many benefits to excercising and diabetes and after Joshua went swimming today he had a great BS reading. He was 106 after his time in the pool. We have been taught that when he swims we unhook him and it is safe to remain unhooked for up to an hour. They also said the more comfortable we feel with swimming and the pump that when the hour is up we can also hook him back up, take his BS and give him his correction or dose and then unhook him again. I think they might have said something about a snack in there, dose and then unhook again. I know there are many more of you out there with much more experience and I would like for you to post how you handle your swimming time. We have an entire Summer of swimming. Also, Joshua was recently diagnosed with Celiac Disease. We are currently transitioning him over to the gluten free food so recipes are very welcome here on the site. Welcome everyone to Joshua's Generation Blog. Look for our up and coming website as well. I will post the address once we get it up and running.
Have a great diabetic day!! Good Luck with the BS"s.

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It's a New Generation

Hello Everyone..........and Welcome to our Blog!!

Joshua is 4 years old and was diagnosed with Type 1 diabetes on August 17th, 2007. He is currently on a mini-med pump and it has changed how we view diabetes completely. He was also recently diagnosed with Celiac Disease. Check back often as we will be having many articles and topics of interest for those involved with diabetes.