Guest blogger Nancy Flanders is here today to talk about how valuable special needs community involvement can be for parents of kids with special needs. Keep reading to learn more about one kind of special need community and how it helps the Flanders family. Maybe it will motivate you to become more community focused, too.
The Importance of a Special Needs Community for Parents
My daughter has cystic fibrosis (CF) and the CF special needs community is tight. I’m hoping it’s like that for other chronic health conditions too, because having that community support is life- changing. The unique factor about the CF community is that our relationships are mostly online. People with CF can’t be around each other and if they are, they should remain at least three feet apart. This is because they can spread harmful bacteria and germs to each other that can leave them sick; while you or I would never even know we encountered these germs. So every day, through blogs, Twitter and Facebook, I connect with other CF parents and adults with CF. I hear the good. I hear the bad. There are a few people in my life that think being exposed to this much information about others with CF is detrimental to my sanity. And I get that. But the good definitely outweighs the bad when it comes to immersing myself in the worldwide CF community.
Understanding
There’s nothing like being able to say or type acronyms like CFRD, and PI or words like “the vest” or “enzymes” and not have to explain what I’m talking about. I can say that it’s a bad poop day in my house and everyone gets it instantly and none of them is even the slightest bit grossed out. I can celebrate how much fat I got my kid to eat today and instead of looks of confusion and disgust, I hear “yay” and “awesome”. Quite simply, we are accepted and understood within moments of meeting a new CF friend.
Empathy
Sympathy sucks. I can’t stand when someone feels sorry for me or my daughter. Yes, CF sucks. But don’t tell me how sad it is. I’ve cried my eyes out and I will cry them out again and again. But I love my kid and I wouldn’t trade her for anything. Instead, I will work hard to keep her healthy, so be proud of us instead. Empathy, on the other hand, is good. When bad CF stuff happens, there’s an army of people who have been in the exact spot and can tell you it will be okay and actually know it. They offer hope and advice, not just an awkward silent sympathy.
Knowledge
Our CF doctors, nurses, respiratory therapists, and nutritionists are all great. But it’s the CF patients and the CF parents who tell it like it is and who have provided me with so much knowledge about this condition. Any question I ask can be answered almost instantly by someone who has experienced the same difficulties or symptoms. They’ve taught me about insurance, medications, how to handle it when your kid won’t take her medications, and about what to look for in terms of signs of complications that can arise. They are a living, breathing, CF textbook.
Hope
When you have an emotional breakdown over CF, you often lose all sight of hope. All you can feel is fear. But the CF community can lift those spirits with reminders of what we have going for us: the latest and greatest treatments, the best foundation in the world, and new drugs that may work to fix the underlying cause of CF.
Reality
When things are going great and your kid hasn’t been sick in a while, you can sometimes wonder if your child really needs all of these treatments and if maybe CF isn’t so scary. (In the beginning stages of diagnosis, this can happen a lot). But hearing about other people’s battles reminds you that it can happen to you. It’s a constant reminder to cherish life. It keeps us on our toes, battling CF with all we’ve got.
Support
News spreads fast through the CF community and when things are bad, throngs of people you have never even met will offer their prayers, love and support. Nothing beats that.
Fun
We get to work together towards a common goal. We get to throw fundraisers and parties and laugh about having to be on constant poop patrol. We attend CF conferences together. No matter who we are or where we come from, we are in it together to defeat CF. We donate to each other’s fundraisers because helping one of us reach our goal helps all of us reach our goal, which is saving CF lives.
How About You?
Are you part of a special needs community, either online or in person? What value have you found in being part of such a community? Leave a comment to second one of the perks Nancy listed or add your own. Nancy and I would love to hear from you.
Nancy Flanders is a wife and mother of two girls, one with cystic fibrosis. After her daughter’s diagnosis at just 6 days old, she altered her career path to focus on writing about raising a child with a special health need. She spends any free moment she can find fundraising for a cure for her daughter and volunteering for her hospital’s cystic fibrosis advisory group. Visit Nancy at www.chronicadmissions.blogspot.com and www.parentingsquad.com.
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