To Those Just Beginning…

Day two of the Health Writers Activists Monthly Challenge and today its all about what I would tell or have told the newly diagnosed. At first I was not going to do this topic.  I don’t really write to the newly diagnosed–do I? I mean, I just ramble about things that we are dealing with now. Diagnosis was a very long time ago. What do I have to offer?

I then realized that yes I do write to the newly diagnosed. I talk to them at conferences.  I respond to them on Facebook. I let them know that it will be okay.  

They will find humor in the strangest places….Like this past Christmas season when my teenage son discovered the reason for this night time high blood sugar levels–the dog was feeding him in his sleep! There was also the time that my son decided that he no longer should be doing his own site changes.  His doctor suggested that he do them since he was about 13 and now at 15 he has had enough.  His reasoning was typical teen and another source of comic relief for an often draining disease.

We need comic relief because there will be times that parents will feel overwhelming fear.  This is normal. Its the new normal that comes from living with a brutal and unforgiving, silent disease. It will sometimes lead to depression and it is important to recognize it, accept it and get help to find a way to move forward.  We all have our days when we want to be the way we perceive the rest of the world to be. We want sleep.  We want a life without injections or insulin pumps.  We don’t want to see blood or test strips but there are sunny days.  There are people who understand.  You will make it through another day and begin to accept your new normal–I promise.  

There is no choice. The alternative is not worth thinking about accept when counting your blessings.  Our children are strong.  They are younger versions of us and we are making it.  They will amaze us and frustrate us.  Diabetes will not hold them back from being incredible. 

Type 1 diabetes is much more than “take an injection and call me in the morning”.  It changes our lives.  It changes our perspective. It demands our time and our efforts even when we don’t want it to but our chidren are alive.  We will connect with amazing new people who also live this life.  There will be downs but there will be ups and over time you will learn to live life with diabetes not for it.

A new door opened

She had been alone for well over a year now.  Her family was on the other side of the country.  Friends were great but she still felt terribly alone. No one truly knew what her life was now like.  She had a toddler with Type 1 diabetes.

Before March of the previous year, she didn’t even know that there were different “types” of diabetes.  She didn’t know that diabetes could kill you let alone almost kill one of her children.  She was no longer so innocent. She was still scared and she felt terribly alone.

Diabetes had caused her to make many changes in her life.  She had bought a cell phone–just in case.  The family had bought a more reliable car for the many trips back and forth to appointments.  Meals were now very structured and their lives were on a timetable–something she had avoided before. 

She had done other new things.  She had braved her fear of the phone and called a total stranger for support.  The woman had been amazing. Her own daughter was a year younger than this woman’s son and diagnosed the month before.  They were both struggling along the same path. Despite living in different towns, over the years they would develop an amazing bond. 

The other huge thing that she did was join the world of the Internet.  Her mother had been pestering her.  “Get online! It would be so much easier to talk to you.  We can use MSN.  It will be great. Just go to your phone company and have them  set you up.” Finally she did just that.

The family computer had been used for Reader Rabbit games but now it was going to be Mommy’s toy.  She truly had no idea as to what she was getting herself into but she did as her mother suggested.  She got an email account. She opened a hotmail account to talk to her mother and sister.  She then began to search.  There had to be other people out there like her.  There had to be other parents of children with diabetes but how would she find them?

After a day of searching and stumbling, she was sure that she would never find anyone else.  She knew enough to know that people were diagnosed with diabetes all the time but finding someone who understood her life as it was now? She was giving up hope. Perhaps the search was futile.

Ironically she finally decided to search for something very simple “parents of children with diabetes.”  She found an email list.  It said that there was high volume of mail so she used her new hotmail account and joined the list. She had no idea what “high volume” meant but she was taking no chances of messing up her normal email account. 

She wasted no time. She was at her wits end trying to dealing with diabetes and her now three year old son.  She immediately sent a message to the group…”how do you get a 3 year old to eat? He throws up. He refuses to eat.  I just cannot get him to eat and yet he has to have his insulin.  He cries. I cry.  What can I do?”

Within minutes she had an answer.  She cried.  It had been so simple…to get advice and to solve the problem. She had known the answer all along but for some reason when a woman named Sharon and a woman named Vikki came back with the answer it made sense where it never had before. Suddenly she was not alone.

She now had a community to learn from.  There were hundreds of people who had been there and done that.  There were people who were at the same stage as her.  There were people who had been doing this for years.  There were people to help her along and there were people to give her a shove when she needed it. 

She had family.  She had friends but suddenly at the end of her computer was a new world.  A world that contained another family.  A world that held people who truly would become her friends for life.  They changed her life.  They supported her and they helped her grow beyond anything she ever imagined.