Thursday, March 8, 2012

Price of Membership Sucks - but the members rule!

I still can't get a minute on the laptop it seems except for late at night when my brain is fried. I had a different post in mind but then remembered I wanted to send an email to the monther of a newly diagnosed 2 yr old. I thought I would share my email.


Hi J. My name is Christina. I volunteer with the JDRF and was sent your contact information by A H who works for the JDRF. I have three children. Two of my children have Type 1. My youngest child was diagnosed (dxd) on Feb 7 of 2007 when he was only 2. It was the scariest time in my life. Nothing can prepare a parent for news like a diabetes diagnosis. However, as you can see we survived. My son, now nearly 8 (just celebrated his 5 year Dday anniversary last month) is thriving, happy, super smart and the most amazing child I know along with his two older siblings. My daughter who is also my oldest child was dxd on April 19, 2009 – two years after my youngest was dxd. She was 9. She is 12 now and beyond wonderful.

I had left you a voice mail but realized that I likely left said voice mail the very day you were taking your dear son (ds) home from the hospital. I remember when we left the Children’s hospital after my son’s diagnosis. Well – I remember that it was a blur. I remember going straight to the pharmacy to fill prescriptions, then everything is truly a blur. I remember fighting with the hospital staff telling them the day before that I couldn’t leave yet. They had wanted us to check out the day before. There was no way I was prepared to leave that safety bubble. They let us stay another night but nearly packed our bags for us the next day.

I know it may seem like it can’t possibly get better but it will. Right now you are likely a bit over whelmed with carb counting, shots, calculations (damn those math teachers telling us that we would need math one day), late nights, middle of the night checks (of course you are likely up feeding an infant too). You are likely sleep deprived, scared, angry and sad. I feel safe saying all this because I was there and I know so many others that have been there too and the story is ALWAYS the same. It will get easier. The basal doses (lantus) will level out, you will be able to carb count every plate in a busy restaurant, you will be able to recognize lows and highs with a corner glance at your ds. You will get to sleep again.

You are not alone and will never have to be alone. There are more of us out here than you can imagine (sad but true). There is a whole community online that will support you, help you, and encourage you. If you are interested in the diabetes online community (DOC) here are some helpful places to start:

Children with Diabetes is a fantastic organization that has online forums where parents share ideas, stories, questions, and support. (I love CWD and I read posts frequently. However, with any online group I suggest caution at first. Don’t share too much info first off. I read posts long before I posted simply because like any organization there are some bullies who think they know everything and don’t play nice with those who disagree with them. It is unfortunate but I felt I should give you the heads up. - Certainly not a reason to avoid the CWD forums - they have saved my butt a number of times with questions and answers, humor, knowledge, and support. I also made some of whom I consider my very closest D friends in the forums.) I am Beermargarhitamom in the cwd forums – long story regarding the username.


CWD also hosts a conference in Orlando in early July. It is called Friends for Life. I happened on it just after my ds was dxd and we were lucky enough to be in a financial position that we could attend. It was beyond wonderful. It there is any chance you would be able to attend this summer I would strongly suggest it.

The DOC on twitter is also amazing. If you are on twitter search #dsma to get started. They have lots of great tweets with links to wonderful stories, advice, education, and support. I am momof2t1s on twitter.

There are a great number of blogs written by parents of children with diabetes and adults with diabetes (diagnosed as children). Below are a few of my most favorites – I don’t get to read them every day but I try. I am a smarter more sane person because of the people behind these blogs.









Maybe I have over whelmed you with information. If so I am sorry. When my ds was diagnosed I had no one. Our local JDRF was not what it is today when we joined the D club. If it hadn’t been for me stumbling on the CWD website and conference I don’t know where I would be in this journey. It has taken me 5 years to be as involved as I am and I am not nearly as involved as others. I will be here to support you and your family to my best ability. I am available almost always. Text, call or email me if you want to talk, have a question I might be able to answer, want to scream, or want to laugh.

I am sorry you have joined the club. The price of membership sucks but the members are phenomenal.

Warmest wishes – huge hugs,

Christina

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