One of the moms in the DOC (Diabetes Online Community), Dawn of Sugar Free Candyland, posted today about why she blogs. This idea came from one of her friends, Dawnmarie of Words from DUG. It’s interesting that this came up today as I was just discussing this very thing on Face Book yesterday with some other bloggers.
It’s hard enough to live with Diabetes in this country without having the misconceptions that are propagated by the media. Many of those living with Type 1 Diabetes are misunderstood, but throw in an even more rare type, Neonatal Diabetes, and even those with Type 1 tend to misunderstand. Early in my blogging and researching this disease, I ran across a post in a mom’s forum that mentioned Neonatal Diabetes as being a farce. This mom was obviously a great advocate for Type 1 diabetes and was under the misconception that the new treatment being used was just another “Snake Oil Treatment”. It is not. My son and daughter still have diabetes. We still have to check blood sugars. We still experience highs and lows. We just have the luxury of not having to give them insulin. Though glyburide has made our lives much easier, it is still not a “Cure” for their disease.
I also educate about my son’s particular struggles because he has additional problems that only about 20-25% of those with Neonatal Diabetes have, neurological symptoms. He is developmentally delayed so telling our story educates not only other families with ND, but the doctors too. Since using sulfonylureas (glyburide here in the US) is such a new treatment for these patients, every success or failure we experience helps the doctors understand more and more about this rare condition so that there is more information for future generations.
It only came recently to my attention that this blog is also a great way to educate all the wonderful teachers and therapists that are a part of my son’s team of helpers. As Andy grows older and his file becomes thicker and thicker, it is harder for me to remember if I have told the teachers, therapists, and doctors everything that may be significant. Having this blog is very educational for them because they can see little glimpses into his past that may be hard to find in the thick paperwork. I am so happy that his teachers and doctors here in our new home have been proactive in their research so that they can help Andy to the best of their abilities.
When Andy was first diagnosed back in August of 2005 at the age of 4 months, I could not find one thing on the Internet about babies with diabetes. I googled every phrase I could think of that might bring me some information, but was sadly disappointed. As time went on, I would give up for months at a time and come back in hopes that something new was out there. When we were finally educated on a different type of diabetes called Neonatal Diabetes, I was then able to come across some new information. But in the back of my head, I was concerned that other parents might be in the same situation that I had been.
After Katie was born, I finally got the courage to start this blog. I mentioned to my “techie” brother that I wanted the website to be simply phrased so that the possibility of my blog coming up on a Google front page would be increased. That is how www.babieswithdiabetes.com was born. I wondered how many parents with a baby diagnosed with “Type 1 Diabetes” were out there getting frustrated. As it turns out, there are more than I thought possible. Last year we had the privilege of meeting other families who have been able to experience the miracle of transitioning off of insulin and starting oral medication instead. Connecting with those families has been a God-send. We share our stories through an e-mail group as part of the Neonatal Diabetes Registry, but our job is not done. If my blog can help even just one family, then it is all worth it.
A diagnosis of diabetes of any type changes your life in a way that you never thought possible. Even though there are some events that have been burned into my brain for eternity, I know the emotions and the memories will fade over time. So one of the reasons I started the blog was so I could remember those events. One day I would love to publish a book about our amazing journey and I have even begun to write it. But it is slow going and I’m afraid that the further I get away from the significant events, the harder it will be to remember them.
Another very significant reason I want to remember is because I hope to someday join in the research for ND. I have always had a passion for science and research so becoming a research scientist just seems like a logical step in this journey. However, I have a family to raise and bills to pay so I must work with what I have for now. It has also been about 20 years since I took any kind of biology courses in college so I know I’ve got to get some refresher courses before I can even think about applying to get a PhD in a totally different field. All of this takes time. By the time I get into actual research, the kids will probably be teenagers. I want to have a reference, documentation of this time. We are still in the beginning stages of discovery. Hopefully this will help guide my research in the future.
As you know by now, I am very much a scientific-minded person. While it is frustrating at times when things just don’t make sense, writing out my posts in a sense can help my mind analyze what is happening. Often times I will come up with a solution to a problem even as I am complaining about it. There’s just something about writing things out that can get the mind organized so the light bulb goes on. If I seem to complain too much, I apologize. I also know that posting some of our problems can help other families come up with solutions and share with us through the comments section. Now, I am not a doctor (yet) and I’m not saying that what works for our children will work for other children with ND (heck, sometimes what works for Andy won’t even work for Katie!). But helping each other now will make it all the more easy for those people diagnosed in the future. Isn’t that what problem-solving is all about? Working together!
Any parent who has gone through a loss, knows about the grieving process. Whether that loss is the physical loss of a child or the emotional loss of a dream, the grieving process is the same. So this blog is my therapy at times. I mourn the loss of a “typical” life for my children. Getting out my feelings, albeit a very public forum, helps me to get past the anger and depression that can tend to overtake me at times. In the end, I know this makes me a stronger person and a better (imperfect) mother. God bless you all in your life’s journey.
Those are my 5 reasons for why I blog here.
Now, it is your turn! I encourage you to go on your own blog and do a blog meme about this very thing… why do you blog?