** Due to the increasing severity of MY ILLNESS, it has become impossible for me to continue to post on a regular basis. Unfortunately, as much as I desperately long to, I am also unable to visit each of your blogs often or reciprocate all the loving, supportive comments many of you continue to leave - even though at times it may appear as though you've arrived at some long ago, forsaken blog! With that said, I really want you to know that I miss every single one of you and that I really am still here! I'm just too sick and too weak most days to be able to sit up long enough to create a brand new post...or even read one. However, I absolutely do receive AND read every new encouraging word you leave (and, often, the old ones, again and again!) and I cherish them now more than ever! I truly appreciate your love, support, and, most importantly, your precious time spent on your knees in prayer for my family and me. It ALL means the world to me and I am truly blessed to have friends like you!
~Hugs and Sister Love, Teresa

FYI: All comments come to my email, which I can easily read on my iPod. I also enjoy Facebook on my iPod because I can catch up on A LOT in a very short time there. Soooo, if you're on Facebook, come 'friend' me there! {{HUGS}} **

Tuesday, June 15, 2010

STARLIGHT,
STARBRIGHT


As some of you may remember, my youngest daughter, Bekah, was diagnosed with Dysautonomia (the same illness I have) last year. Most days, Bekah functions fairly normal for the most part. However, she does have many days when she can't do much more than attend school, come home and go to bed. There are even the occasional days when she can't even do that. She can only stay in bed and rest/sleep because of the tachycardia (high pulse rate), fatigue and nausea that she suffers from. For a 15 year old, having a chronic illness definitely puts a kink in your social life.

A few months ago, I found a very interesting link when I was visiting the site, ButYouDontLookSick.com. The link was to a social networking site for young people ages 13-20. It is called Starbright World. I went to check it out and was really impressed. I even thought it was something my daughter might be interested in.

Here is a little info from their homepage:

'Starbright World is a virtual hangout where you can build on existing friendships or create new ones, from home or from the hospital. Starbright World is an online social network where teens (ages 13 to 20) who have serious medical conditions, and siblings of seriously ill teens, can connect with each other via moderated chat rooms, games, bulletin boards, videos, and more.'


And they have a list of 'some of the illnesses and conditions that qualify for SBW membership':

A – autoimmune disorders, AIDS/HIV, anemia, severe asthma, arthritis
B – burn injuries, brain tumor, blood condition
C – cancer, Crohn’s disease, ulcerative colitis, cystic fibrosis, cerebral palsy, cardiac (heart) problems
D – diabetes (type 1 and 2)
E – endocrine problems, epilepsy
H – Huntington’s disease, HIV/AIDS, hydrocephalus, hypophosphatasia
I – infectious disease, inflammatory bowel disease (IBD)
K – kidney disease
L – leukemia, lupus, liver disease, lymphoma
M – migraine headaches, muscular dystrophy, mitochondrial disease
N – neurological disorder
O – obesity/overweight, osteosarcoma, osteomyelitis
R – respiratory problems, rheumatic disease
S – sickle cell anemia, seizure disorder, spina bifida/myelodysplasia, spinal cord injury, stomach or digestive problems
T – transplants, tumor or mass
U – ulcerative colitis


Since I found the site, Rebekah has become a very involved member. She has been spending A LOT of time there and has made a lot of really close friends that she chats with online quite often. As her mom, I really like the site. It is heavily monitored by adult 'hosts', so no foul language or inappropriate behavior is allowed and any suspicious activity is handled immediately. Therefore, the possibility for adults to be there preying on our children is almost non-existent. Also, for a child to sign up, they must first have parental consent.

So, if you know of a young person who has a chronic illness and think they would like to get to know other kids going through something similar, let them know about Starbright World.

No matter who you are or what you're going through, it helps to know you aren't alone.

{{HUGS}}

Teresa

10 comments:

Karen Mortensen said...

I am glad you found this for her. It sounds really wondeful.

Heather said...

That is really neat! I'm so glad that you found something like that for her!
Stopping by from SITS!

Katie said...

I didn't realize she had this too. I haven't been following long enough to have read the original discovery and I haven't had time to go back and read everything. I will add her to my prayer list for your family for health reasons specifically now.

I'm sorry she has to deal with this, but glad for the site! That's awesome she has that encouragement. And glad to know a "specific" to pray for her about too.

Blessings!

Double Wide Mom said...

What a wonderful place for her and you as well as many others. Thanks for following recently and glad I checked back. My prayers are with you all.

Cameron said...

I think this is great! I had no idea they had sites like that, but I'm not surprised! The internet is a great place to find community. That's one reason why I love blogging - meeting other moms & identifying with their struggles, hopes, fears, experiences from all around the globe.

I'll be praying for your daughter! That age is tough even without a chronic illness, but it's so great that she's found a place to connect with others!! You sound like a wonderful mother!

bluecottonmemory said...

People like to criticize the World Wide Net, but then, they must not know about sites like this! What a blessing!

I did not relize she had been diagnosed, too! With your experience and insight, I bet you will find other great options and solutions for your daughter - the silver lining!

Cameron said...

Also - I gave you a blog award today. Check it out!
http://www.ingenuemom.com/2010/06/beautiful-blogger.html

Tammy said...

What a great resource for younger kids. I don't think I knew she was also diagnosed. I will now pray for you both! xoxo

Teresha@Marlie and Me said...

I'm so glad Bekah has such a wonderful place to go for support. She is lucky to have such a resourceful mother!

septembermom said...

That will be a valuable place for support for Bekah. With you in her corner, she'll just shine through it all!

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