January First
This amazing blog is the story of the life of the parents of January, a 7 year old girl with severe, birth onset schizophrenia. What struck me most about the writing here is how searingly honest the father is about his and his wife's emotions and reactions. Read this, the ending to his introduction, and try not to be both incredibly moved and struck by both the heartbreak and the honesty:
Even then, it did not occur to us that our daughter was mentally ill. Now I wonder who was really delusional. Susan and I held fast to our belief that Jani was just a misunderstood genius. Then Bodhi was born. The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage. We got a referral to a psychiatrist. Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times. Today, Jani is no longer a brat. Today, Jani is schizophrenic.
My grandfather was a paranoid schizophrenic, a man who hallucinated and feared and refused to take his medications in the manner which could have provided him a life more accessible to the heart by those who loved him. My mother's cousin was diagnosed with schizophrenia as a teenager, my grandfather as a man in his twenties, and my father's brother, also in his twenties. This is, for my family, more than a disease: it feels like a curse. Living with someone suffering from this disease is like the most severe LSD trip you can imagine, only much worse, because it's real, it's happening to someone you love, and like Alzheimers, it robs that person of who they are meant to be. I try to imagine the pain these parents feel when they look at their beautiful January- and cannot. Of course I cannot. But I can read his blog. I can connect. And I do. Maybe you want to, as well.
Speak Softly....
This amazing blog is written by the talented and very kind writer and mother, Vicki Forman, who has just had her first book published: This Lovely Life ( which you can find in major bookstores and Amazon.com ) Here, a summary of her memoir:
Vicki Forman gave birth to Evan and Ellie, weighing just a pound at birth, at twenty-three weeks’ gestation. During the delivery she begged the doctors to “let her babies go” — she knew all too well that at twenty-three weeks they could very well die and, if they survived, they would face a high risk of permanent disabilities. However, California law demanded resuscitation. Her daughter died just four days later; her son survived and was indeed multiply disabled: blind, nonverbal, and dependent on a feeding tube. This Lovely Life tells, with brilliant intensity, of what became of the Forman family after the birth of the twins — the harrowing medical interventions and ethical considerations involving the sanctity of life and death. In the end, the long delayed first steps of a five-year-old child will seem like the fist-pumping stuff of a triumph narrative. Forman’s intelligent voice gives a sensitive, nuanced rendering of her guilt, her anger, and her eventual acceptance in this portrait of a mother’s fierce love for her children.
Heartbreakingly, Vicki lost her little boy last year. Evan died of a complication revolving round his physical problems. What is left is the love the family had for him, and his legacy in this memoir. I highly recommend Vicki's graceful memoir, as well as her incredibly soft spoken but simultaneously intelligent and firm style of writing. She reaches me.
Monday, July 13, 2009
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Wow, both of those, just as they are, broke my heart. But they also shared such an insane strength, to handle such obstacles in the way they have is phenomenal. They are true idols.
I'll be checking both of them out.
Bambola x
I hadn't heard of either of these but will definitely read them. I've been writing a memoir, too, and recently began a second one which deals with my husband's Alzheimer's, diagnosed in his 40's.
It sounds as if both these writers have brought great sensitivity and intelligence to unthinkable situations. If we could all do that, there would be far more grace in the world.
Humbled, thank you.
Wow! Good referrals! I know who to ask when I need a good read! I'm so glad I found you, Maggie. Not sure really how I did but I'm glad I did.
There are no mistakes.
oh my heart! I can not even imagine the pain that these families face daily. Thankyou for sharing their stories with us.
Much love.xx
Thank you MM for bringing these 2 stories into my life. It will be a privilege to read them. And a huge thank you for sharing you family's struggle with this most vicious & destructive of diseases.
Millie ^_^
Thanks for the recommendations. I'll check them out later today.
wow. I am taking my broken heart over to read about these people.
whew.
Hi Maggie!
Thanks for your love on my blog! You are so sweet. I can't wait to get home tonight and catch up on my blog reading - I'll definitely be stopping by yours - it looks wonderful!
As for the foot and back problems I mentioned in my blog; most definitely 100% they are related. A lot of people who have foot problems, over-compensate when they're standing or walking and so, it creates tension in the muscles of the upper and lower back thus causing pain. If your husband is having this sort of pain chronically, I would think about seeing a chiropractor and/or a podiatrist. A quick way to check if he's walking a bit funny is to look at his shoes; if one area in particular is worn out a lot (like the heel for example), he might be dragging his feet a bit or relying on the back of feet too much to keep him balanced.
Hope this helps =)
Hi Maggie May. Thanks for sharing. I will add these to my reading list. The first one in particular broke my heart. It is hard to imagine children with illnesses so severe. My mother was diagnosed with paranoid schizophrenia when I was 13. Then she was diagnosed as bipolar/borderline/manic depressive. It changed a lot. It seems that we have been told she has everything and nothing. Now she is doing well and has a normal life, thanks to many meds and doctors. I can't imagine a child living with this. Or a parent. Their story is very touching.
The book sounds very good. :) Thanks for sharing the stories, they were both wonderful. :D
Holy hell. Puts things into perspective, doesn't it? And with such grace.
Check out this blog,
http://martinomadness.blogspot.com/ You will develop the greatest appreciation for your kids because recently, they lost one of theirs. Truly Heartbreaking.
Maggie - Amazing - these are heartbreaking and thought provoking. I'm stunned at how strong these families were and are.
The depth and courage of parental love never ceases to amaze me.
Hi, I thought I'd stop by to thank you, Maggie, for the comment you left on my blog last week. I'm sorry I didn't get here sooner or get to answer you comment, It was one of those really hectic weeks.
Anyway, I love your blog and this post. I also would like to recommend to you and your readers, another blog that is written by a stay at home dad who cares for his twin daughters, one who has epilepsy. It's called, Looky Daddy! and is so well written. Some of his posts will make you laugh until you cry and others will make you run for the tissues to wipe your tears.
Anyway...I don't know the guy personally, but can't help but think you'd like his blog.
Here's the link.
Hope you can stop by Bad Habit again and if you have a chance, I just started another blog called, "Eating Habits". If you're into cooking or just talking about great recipes, wine, the newest kitchen gadgets or just sitting around the kitchen table to gab...you might like it. It's still a work in progress but I have high hopes for it.
Wow. Heartbreaking and inspiring, both of them.
Your blog is incredible, it's definitely been added to my Google Reader.
Reading this reminds me to be THANKFUL.
Thank you for that reminder!
Fantastic finds, thank you.
Thanks for bringing these sites to our attention. I'll certainly be checking them out a little later. As someone else above has said, it sure does put things into perspective.
Maggie, thank you so much for the recommendations. I can't wait to pour into both! These are just the kind of honest, real accounts of parenthood that I love to read.
I have a good friend whose young son is currently hospitalized with mental illness. They are struggling for a diagnosis. Although, her research has her leaning toward schizophrenia, the doctors are looking in a different direction. I will be sure to pass along the link to this blog to her.
I tend to stay away from stories that I know would make my heartbreak and eventually make me cry. But I just cant. Thanks for these recommendations. Im on the January 1st blog now and I cannot stop reading. Instead of heartbreaking, their stories are truly heartwarming.
xx
Maggie! These are both heartwrenching and I've already bookmarked them both. While the first one is equally tragic and important, the first one, January First, speaks to me most especially.
Since I work with people who have Schizophrenia all day I totally know how devastating it is and to have it run in the family like that is astounding and horrific. I will have to check out that blog. As for Vicki, I don't know how I lost track of her since she was one of the first blogs I checked out many years ago when Evan had just died. Thanks for re-directing me back!
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