Hiya Blogland!! First–I just want to express my gratitude and thanks for all of your comments in support of the black and White Party. I plan to answer everyone ASAP if the weather cooperates. I’ve been super busy at work so my lunch-time browsing has been cut short and we have been having terrible thunderstorms in the evenings the last few days keeping my computer time to a minimum at home.
I had the stupidist convo with some co-workers (male) last week. They both have gout (one knee, one toe) and were discussing how badly it hurt when it flared up–so bad they couldn’t bear even a sheet touching them. I commented-“Welcome to my world”- that’s how Fibro feels, plus add in severe charley horses, the migraine from hell and bone-numbing exhaustion. One guy said “Huh-she’s trying to one-up us” as if I’m just exaggerating or such. I don’t LOOK sick and some days I feel pretty good. But that can change in the next 10 minutes. The other co-worker has friends with Fibro and said that knowing it felt like his gout flare helped him understand what Fibro feels like.
BTW– the insensitive one came back later and apologized.
Today I want to share a bit about those who stand beside a child with a chronic illness. I can only imagine the agony it must be when it’s your child that suffers and you, as a parent, naturally want to “kiss the boo-boo and make it all better”. And you can’t fix it. They don’t wear a cape but they are a hero.
Dear Curtise of The Second Hand Years is one of these heroes. Her Littlest “has a severe skin condition which is not only very visible, but has all manner of implications – her skin is prone to blistering and tearing and infections, she can’t sweat so she overheats easily, it’s painful when it gets super-dry and tight, and the skin care regime is a burden. We try our best to normalise it all for her, but we know, and she knows, it’s not great, and it won’t ever improve.”
Lynne of The Good Will Hunting’s daughter, The Teen, suffers from sickle cell anemia. Here is a link to her story and her fight to cure sickle cell anemia. This kid, and her mom, are pretty AMAZING!! Click here to read all about it: KeeCee
My sister’s youngest son developed Type 1 Diabetes when he was in kindergarten (he’s now 20). Kathy has said she didn’t think she slept the night through for years after his diagnosis. There were many trips to the emergency room and near scares.
I have friends who have seen their son become schizophrenic at age 20. They have watched all of his and their hopes and dreams for him go up in smoke as he battles the illness.
A reader commented: “I have a daughter who has Crohn’s and at times I just cry because of her pain and how it affects her life, husband and son. I do what I can to help her, but feel it’s never enough. You feel so helpless and want more than anything to make it better but can’t. 😦 ” I totally get what she is going through as my Dad endured Crohn’s for 34 years.
This reader wrote: “I’ll be doing it…in honour of daughter tilly, whose rare syndrome, smith magenis syndrome, never lets up on her and also to celebrate clawing my way back from depression after her diagnosis” I had no idea what this condition was so I looked it up. Smith-Magenis syndrome is a developmental disorder that affects many parts of the body. The major features of this condition include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioral problems.
Send me a picture of you in your Black & White outfit with a link to your post by Saturday June 15th at firstname.lastname@example.org. I’ll be showing all the participants next Sunday for Visible Monday.
My Black & White so far this week. You can’t go wrong with gingham!!
Here’s todays outfit. The pink bow was left over from some project and I decided to pin it to bring some more pink into the outfit!
I’ll be having some news on Thursday about a new family addition arriving this weekend. And PERISH THE THOUGHT I am NOT pregnant!!
E.T.A- I totally forgot to add my shoes for Bella’s monthly Shoeshine. Don’t forget to stop Citizen Rosebud and check everyone out!!
Y’all are really are amazing!!!