I know that we’ve touched upon this topic before, but as a writer who writes personal memoir type stories, there is always a careful line to walk when writing about your kids.
In a recent blog post on my site, I wrote about one of my daughters having a hard time at school with some “mean girl” bullies (I know, the worst, right?) I wanted to show how it’s tough being a mama hen when one of your chicks is struggling (I write about chickens, remember?) I was careful to keep the focus on my view and not to misplace feelings of mine onto her.
I try at all times to be respectful of my children’s privacy.
In that same post I mentioned how another one of my kids is really suffering right now. And I mean really.
He’s got chronic Lyme and though he’s been on meds for several months, it was undiagnosed for so long (even though we went to 11 Doctors) that he’s having a rough time of it. Walking is difficult, holding a pen is difficult, his skin is breaking down, he’s got severe fatigue. He should be home but instead he is finishing out his freshman year at college.
My son is nothing short of an inspiration.
As a writer, I want to use his experience (through my eyes) to both inspire people who have this disease and also to warn others about the dangers. Lyme disease is not just a flu you get in the summer that goes away with a dose of medication. If left to proliferate, it can devastate your body.
My son is a living testament to that.
It’s tough because he’s very private, as he’s gotten sicker and sicker he wants less and less people to know.
But as his mom, as he gets sicker and sicker, I want to yell louder and louder.
LISTEN PEOPLE!
ESPECIALLY YOU MORONIC DOCTORS – KIDS ARE DYING BECAUSE NO ONE KNOWS HOW TO DIAGNOSE OR TREAT LYME DISEASE.
LISTEN UP BEFORE ANOTHER PERSON HAS TO UNNECESSARILY SUFFER.
And just as the Whos told Horten –
WE ARE HERE!!!!
But instead of yelling about it, I write about the disease and its impact. I’ve managed to place a few articles on Lyme disease (highlighting other families) and I continue to write, I write, I write material that may never see the light of day but I write.
My son finds an outlet in his studies, each class, each assignment, each test, gives him a goal for which to reach.
I find an outlet in my writing and like it or not, my kids’ stories are, like a beautiful tapestry, woven so tightly into mine that if one were to remove their individual threads, there would simply be nothing left to tell.
***
Wendy Thomas is an award winning journalist, columnist, and blogger who believes that taking challenges in life will always lead to goodness. She is the mother of 6 funny and creative kids and it is her goal to teach them through stories and lessons.
Wendy’s current project involves writing about her family’s experiences with chickens (yes, chickens).
They say that anger fuels passion. Consider me passionate about Lyme.
Live to Write - Write to Live 
Gorgeous quilt photo — where is it from?
It’s not ours, you can follow the photographer’s link to see where he got it.
Wendy
I clicked on the photo and couldn’t see any information about it.
It was a public domain photo, that’s all I can tell you. Someone took the photo and graciously allowed others to use it.
Wendy
(((Hugs))) to you and your family, Wendy. I know it’s hard for your son to have his private misery made public, but your (collective) willingness to share these experiences could save lives.
Thanks Gina. I hope so.
Wendy
I didn’t realize Lyme disease was that debilitating – and it’s so scary. We have a major tick problem where we live – one of the main reasons we got chickens. After two years of having chickens, I haven’t seen a noticeable difference in the tick population. Ongoing battle every year… Hoping for the best for your son and that his health improves soon…
Like you, I had no idea about how severe it is. Hence my *need* to write and spread the word. Sooo many people have Lyme and don’t know it.
Wendy
I’m very sorry to hear about your son, misdiagnosis can be a major problem with some conditions. I know of people with similar problems. I hope everything goes ok.
Thank you, there are many stories of people overcoming Lyme, it’s just that once you are at the Late Stage, it’s a long, painful road back.
Wendy
You are probably familiar with all the groups regarding Lyme disease, but my friend has the disease and is involved with the group “Rally Against Lyme Ignorance” on Facebook, which strives to improve doctors’ and health insurance carriers’ awareness, just in case you are interested.
Actually, I didn’t know about that one. Thanks,
Wendy
Inspiring post for me…giving me the ok to shout with my words…sometimes the world hasn’t recognized what is important yet…frustrated with you about the lack of attention to the disease…yes, I have heard stories and then they seem to go away with still so many children being exposed… Wishing you and your family the very best.
-Jennifer
Jennifer,
Thank you for your kind words. The anger, the frustration, it’s not such a bad thing. It makes me move forward.
Wendy
It’s absolutely ridiculous that Lyme went misdiagnosed in your child for so long.It’s common place in the animal world to test for Lyme if an animal is around places where Ticks could be, are showing lethargy, in-appetence or neurological signs…why not with humans? This is insane!
When we went through his medical records, we can see when he was infected (he actually had a round red rash that I brought him for because I questioned Lyme) but because there was no white inner ring, they dismissed the rash. That was 6 years ago. With all of his on-going complications, not one of the 11 initial Drs we went to thought to test him for Lyme (even though we had 3 dogs and live in the woods.)
Hear my fury.
Great post. I stumbled upon it and am thrilled I did. Now I’m a “follower”. I, too, struggle with how much to write about my children. It’s a balance I believe – to reveal for understanding but not reveal so much that it is full exposure. My husband recently pointed out that our children will read my writings some day. That will be interesting. Thanks for the blog post. Feel free to check mine out at http://www.martinisandminivans.com.
After developing an allergy to beef from a tick bite, I am much more aware of their affect than I used to be. Continue to spread the word, it may save a life.
Here’s my blogpost about the tick bite allergy: http://trainswhistle.wordpress.com/2011/08/06/one-little-bite/
I write my children’s stories into mine as well. For the most part, they’re tolerant and even supportive of my efforts, although some eye rolling insues at times.
You might enjoy this American Masters Documentary on Erma Bombeck:
http://video.thinktv.org/video/1430382156/
I was able to watch this last night, thank you for the link. Very enjoyable and something to which I can greatly relate.
Wendy
Very good stuff, and very horrifying situation. I have a son, and while I rarely write about him, I really understand a parent’s concern. For what it is worth, we’ll be praying for you.
How horrible for your son and you. It is good to hear that your son is still in school and continuing his studies despite his illness. He has a lot of gumption, that one! My prayers are with him. 🙂
thank you.
Wendy
Thank you for writing this. My prayers for your son. I was diagnosed with lyme after several misdiagnosies and, even though it was diagnosed within a few months of the infection it still took a full year to feel right again. I know some people in my practice who have had some success combating some of the late stage lyme effects with dietary changes. All the best to your family and thank you for writing.
Ah then you know well the frustration of Lyme. When my son gets home he is going into “mommy icu” which means juicing (with lots of supplements) for the first week to detox from the school diet and then a very closely watched diet of no sugar, no gluten, and no dairy.
He is willing to do this (which tells you a little about how miserable he is right now.)
Wendy
Anytime an illness impacts quality of life, especially for someone close to us, it begs us to tell the story. It serves many purposes – it allows us to grieve for what is lost, honor the strength and perserverance of the individual affected, and offers information and hope to others.
The topic of writing about your children is especially sensitive for me, as I have a daughter afflicted with mental illness and a gamut of severe learning disabilities and lowered cognitive functioning. Every time I hear a news story highlighting a mentally ill person who went off the deep end and behaved violently, I want to have my own version of a writerly temper tantrum – because I know the FACTS, know mental illness does not make you a danger to society (the prevalent stereotype). I want people to know that (like Lyme) ANYBODY can be affecte at ANY time in their life.
This is true of many diseases. It’s different, isn’t it, when you have a child that is impacted? You can no longer stand at a distance. Up close and personal, however painful it is, gives you the gift of seeing all the nuances of how a disease affects a human being. It will make you a better writer because your worldview is expanded. It gives you appreciation for the strength your child has to continue on and LIVE despite overwhelming challenges.
It always makes me feel a little shabby on days when I make excuses for my own lack of motivation!
My heart goes out to you and your son. I wish him continued recovery.
Laura,
Very true words you have written. It is only when you have gone through the experience do you even begin to have an understanding of the impact.
It’s an experience of which once your eyes have been opened, they can never, ever be shut again.
Best wishes to you and your daughter.
Wendy
Oh Wendy my heart goes out to you and your son. I was sitting agoniizing over whether to blog about my husband’s Amyloidosis which takes over my life and I decided not to. But you are bbraver than me and I appreciate your strength. It put my own worries into a clearer perspective so i can keep writing now – but not about my husband!!
Thanks
As a mama who lives in Minnesota, I am rather terrified of lyme and ticks. I do hope your son gets 100% better SOON.
Hooray for you,Wendy, continuing to get the word out about the true dangers of undiagnosed Lymes’ Disease! Praying for your wonderful college freshman son and admiring so very much his fortitude. Please continue spreading the word about Lyme’s Disease. I am sharing this post on my Facebook timeline and tweeting it.
Wendy, I have a doctor who healed me, and he told me that he eventually would, after 71/2 years late stage undiagnosed. Contact me if you’d like his name. He has a 97% “cure” rate, and he is a savior to many besides me.
I’d like his name for a friend who is struggling with symptoms and can’t seem to find relief…can you post it?
You and your family have my deepest empathy. I have never experienced Lyme disease [so far- gulp!], and I didn’t know what it is or where it came from till I read this post and it’s comments. However, now I will definitely be on alert with me and my son, and I will do my best to make others in my area aware as well. We live in the south, around the Appalachia mountains- this needs to be known. Thank you for sharing your story, sharing your life, and I hope you take some kind of solace in knowing you’ve probably saved a few lives in doing so.
Sending positive thoughts your way.
wow. You just made my day. Many thanks and continued health to your family.
Wendy