Shaking fist angrily at the universe
I had never heard of the site Caring Bridge until this week. Then I received an email about someone who had set up a page there.
Then I received a second email from someone entirely different who had set up a page there.
That's not exactly a good week.
Caring Bridge offers journal pages to help people stay in touch with sick friends and family through updates and photos. You can sign the guestbook, make a donation - or, basically, click refresh frantically, hoping for positive news in the next update.
The first email I got however, was about my brother's niece. Florence is Thalia's age. Her mom and my sister-in-law and I were all pregnant at the same time, comparing belly growth and whining about nausea. Florence was a perfectly normal, sweet, funny baby and then toddler - I still remember the first time my girls, and my brother's two girls, and Florence and her sister all raced around the backyard together as we all cooed and ahhed at all that lovely estrogen, and imagined what they'd be like as teenagers, borrowing mascaras and comparing boyfriend stories and pretty much scaring the crap out of us.
And then Florence turned 20 months. She started to have tremors.
Later, she started limping. Then she started speaking less. Then she developed Celiac. Then tremors became blank stare seizures. Those became body drop seizures. She had to wear a helmet. A fucking helmet, people. A three year-old had to wear a helmet because they never knew if she was going to just fall down at any moment.
This August she stopped walking.
This September she stopped talking.
There is still no diagnosis.
I can't even imagine what it is doing to this family who has spent months and months and months taking turns living in the Residence Inn near the hospital while their 6 year-old is home with grandparents and sitters and au pairs. And aside from the emotion of seeing their baby girl fighting for her own life and going on steroids and IV drips and medicines that give her kidney stones, they are battling debt and insurance claim rejections and...well, you can imagine.
I have hardly let myself think about Florence. I haven't reached out to her parents, even though I've checked in with my family frequently for updates. I haven't called. I haven't written. And I feel utterly horrible about my silence. The truth is, it's just been that painful and terrifying to me. And sometimes in a crisis, I'm not the person I want to be. I'm the person who shuts down completely and removes myself from the situation so it won't hurt me. Because I feel things very, very deeply.
I can't watch the news anymore, because stories of abducted children and drive-by shootings just bring me to tears. Those are not even children I know and have pushed on a swing and have handed a slice of birthday cake to at a party. Those children are not Florence.
Following the story of Anissa this week has hit me doubly hard because it's brought up all the feelings and emotions about Florence. And because just feeling it is killing me, I figure I will do something. However small it is. After all, one of our own is hurt, we rally. That's what we do. That's what I was just talking about this week. And a few days before that, too.
[EDITED TO ADD - I've removed the link to the website. All I ask for is prayers or good wishes or white light or however you think of positive healing energy, directed her way.]
If you want to help Anissa's family, this is the button with a link to do just that.
[edited: link no longer active]
I just keep thinking, there but for the grace of...someone.
Someone who's seriously messing with good people right now.
-----
I've closed comments on this post because I'd rather you click anywhere in here, than the link to comment. If you do have some helpful information though for Florence and her family, by all means email me any time at mom101[at]mac.com.
Then I received a second email from someone entirely different who had set up a page there.
That's not exactly a good week.
Caring Bridge offers journal pages to help people stay in touch with sick friends and family through updates and photos. You can sign the guestbook, make a donation - or, basically, click refresh frantically, hoping for positive news in the next update.
Other bloggers who are reading might guess that the second email I received was about Anissa Mayhew, a mom of three and all-around hilarious woman who is now fighting for her life in an Atlanta hospital, after the massive stroke she had on Tuesday. The news has weighed heavily on me.
The first email I got however, was about my brother's niece. Florence is Thalia's age. Her mom and my sister-in-law and I were all pregnant at the same time, comparing belly growth and whining about nausea. Florence was a perfectly normal, sweet, funny baby and then toddler - I still remember the first time my girls, and my brother's two girls, and Florence and her sister all raced around the backyard together as we all cooed and ahhed at all that lovely estrogen, and imagined what they'd be like as teenagers, borrowing mascaras and comparing boyfriend stories and pretty much scaring the crap out of us.
My niece and nieces-in-law. Florence is in pink.
And then Florence turned 20 months. She started to have tremors.
Later, she started limping. Then she started speaking less. Then she developed Celiac. Then tremors became blank stare seizures. Those became body drop seizures. She had to wear a helmet. A fucking helmet, people. A three year-old had to wear a helmet because they never knew if she was going to just fall down at any moment.
This August she stopped walking.
This September she stopped talking.
There is still no diagnosis.
I can't even imagine what it is doing to this family who has spent months and months and months taking turns living in the Residence Inn near the hospital while their 6 year-old is home with grandparents and sitters and au pairs. And aside from the emotion of seeing their baby girl fighting for her own life and going on steroids and IV drips and medicines that give her kidney stones, they are battling debt and insurance claim rejections and...well, you can imagine.
I have hardly let myself think about Florence. I haven't reached out to her parents, even though I've checked in with my family frequently for updates. I haven't called. I haven't written. And I feel utterly horrible about my silence. The truth is, it's just been that painful and terrifying to me. And sometimes in a crisis, I'm not the person I want to be. I'm the person who shuts down completely and removes myself from the situation so it won't hurt me. Because I feel things very, very deeply.
I can't watch the news anymore, because stories of abducted children and drive-by shootings just bring me to tears. Those are not even children I know and have pushed on a swing and have handed a slice of birthday cake to at a party. Those children are not Florence.
Following the story of Anissa this week has hit me doubly hard because it's brought up all the feelings and emotions about Florence. And because just feeling it is killing me, I figure I will do something. However small it is. After all, one of our own is hurt, we rally. That's what we do. That's what I was just talking about this week. And a few days before that, too.
[EDITED TO ADD - I've removed the link to the website. All I ask for is prayers or good wishes or white light or however you think of positive healing energy, directed her way.]
If you want to help Anissa's family, this is the button with a link to do just that.
[edited: link no longer active]
I just keep thinking, there but for the grace of...someone.
Someone who's seriously messing with good people right now.
-----
I've closed comments on this post because I'd rather you click anywhere in here, than the link to comment. If you do have some helpful information though for Florence and her family, by all means email me any time at mom101[at]mac.com.
posted by Mom101 at 8:31 AM
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