06 March 2013

How to Start a Preemie Support Group

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Starting a preemie support group might sound difficult but it's actually really easy, so I'm going to walk you through the steps. There can never be too many!

First, you'll want to be part of a message board or bigger group on Facebook. Since I started out on a message board I'm going to take you that route. I like message boards better because you can take your time answering things or just lurk and read posts and answers without anyone knowing you're there. In the beginning it's better to lurk because you want to see what the board dynamics are and what questions come up a lot.

There are two reputable preemie message boards that I'm aware of: The Bump and What To Expect. If you click on those links they will take you straight to their preemie groups. Both are accessible by mobile.

Once you're involved on a board you'll find yourself clicking with particular moms; you're becoming a regular. They'll probably be in a similar boat and so you will see each other posting on the same threads. Maybe you just had a baby around the same time and they're currently in NICU or a batch of preemies have just come home and you're all struggling with life after NICU. Perhaps you share 'preemie issues' (like Tristan had a passion for bradycardia).

You'll know. It will feel right.

Most people prefer the ease and speed of Facebook but are drawn to the anonymity of message boards in the beginning. When you feel comfortable you can suggest starting a group on FB. There are a couple ways you can do this: don't do it the way I did! Not exactly, I mean. I grew up in the Pen Pal Era of the 80's so I love exchanging mail with people..........................

...so I had this brilliant idea to start a group based on being pen pals (catchy, right??!) and then we could exchange cards, birth announcements, words of encouragement, etc. I asked another girl on the board if she thought everyone would be into that idea and she said, TOTALLY! So I set it up. I just openly posted it on the board, right there for anyone on the interwebs to see and join. Full names with the intent of exchanging addresses. I swear I am not an online newbie!

Don't do that! Privately message the women you are interacting with and invite them. Then once in your group you can discuss who else is a regular and PM invites. Put it on mega-lock-down. Invite only and invisible settings.

You'll want to limit how many women to include. There are lots of 'pages' on Facebook (Preemie Resources and Peek-a-Boo ICU for example) that are great for a large crowd, but 'groups' are a lot more intimate.

You'll be sharing and growing together. Healing. Celebrating. Breaking down. Holding each other up. Then you'll be exchanging recipes, sharing hot sale tips, asking what color eye shadow you should wear with your outfit, how to get your hair cut next, what vacuum works best, and before you know it you'll even have a monthly book club, a clothing sale/swap section, and a fitness group going on within the mother-group! Those are the things the larger pages can't support: intimacy. That aspect has been a key part of my healing.

We eventually had to close our group to new members. We wanted to invite every preemie mom under the sun to come and share in our closeness but it's a delicate balance and once there are too many that's when drama can start. I'm very pleased to say that our group has been respectful and supportive of each other. Our similarity: we all went into preterm labor and experienced life in NICU. For many it was our first child. For others it was a second. During the time since we started there's been a round of full term babies born - siblings!

This is something that can last - forever, I hope. Sometimes we drift or become extra busy with whatever is going on in our lives but they're like that old friend where you can start a conversation out of the blue and it's like you just spoke yesterday. It's so comforting.

I hope that if you're a preemie mom and aren't currently in a support group that you'll join one of the boards above - or if you're already on a board don't be afraid to branch off. It could be five of you; it could be 50.

I'm psyched to say that we've also kept up our pen pal theme for two years now! From rounds of cards to secret gift exchanges between the moms and babies; it's so fun. For Christmas we did treats for the moms, for Valentine's Day we helped our little ones make cards for their pen pal. Feel free to steal the idea!

Just remember that while you'll probably want to rescue everyone you can't. However you can always encourage other moms to start something equally fantastic!

If you have any questions feel free to ask in a comment or e-mail me privately. I'm here to help.


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