Sunday, March 25, 2007

My view

Handspun BFL in Joseph's Coat colorway

I’m the early bird of the family. I love to be up before anyone else, have my first cup of coffee without having to say a word to anyone but the dogs and the cat and just listen to the new world. And the world up here is once again just beautiful. Now is the season for “the crusted snow” (is that how it is called in English?), the season when the sun warms up the surface of the snow and melts it during the day and during the night the temperature might drop up till –10 C and the surface of the snow freezes and becomes so hard that in the mornings you can practically walk anywhere or you could even ride a bicycle on the snow in some places. You should see the dogs now. The little one just went wild when she discovered how hard the snow had become one morning. Old Miina is happy to make her very own rounds without having to swim in the snow or follow the roads. I usually walk along the snow mobile tracks when I walk on the lake but now I’m free to go anywhere. This is very liberating. Even better than in the summer, because in the summer you can't walk on the lake!

The sun is up and there is light all over, the sun rays bounce back from the white snow and you cannot escape the rays no matter now hard you tried. You might ask that why would you want to even? Why would you not love to suck the light into your brain finally when you have all the light after the long and blue winter?

I would, I love the light. Yet part of me is very worried when I see another bright daybreak because this huge amount of light is not good for D (the other one of my twins) and her epilepsy. Now that I have said it, I will talk on the blog about her epilepsy once in a while.

I could set up a different blog for the epilepsy part of my life, but then, I could not separate epilepsy from any part of D’s life, nor from my life, not even from my fibre life, no matter how hard I tried. It is present everywhere, so this blog has to bear it as well. This will not turn into an epilepsy forum, nor an education site, I will just blog about it when I need to. I have D’s permission to do so. This will be only a mother’s view. Other mother's might have different views, this is mine.

If you ask me a question about epilepsy on a blog and I don’t answer, then the reason might be that I’m not ready to talk about it yet, or that I don’t know the answer. Also I must respect D’s life. You are welcome to use my email on the sidebar if you want to.

Maybe some of you will think that I don’t want to know and don't want to read about any of this, I come purely for the knitting or other crafts, I want to be inspired and only look at the bright side of life in craft blogs, because I have my own content of "not bright" to deal with. Or that there is enough of bad stuff in the world as it is, blogs I read to have a break from all that. You can leave now if you want to, but I’d rather have you to stay. Definitely I would like you to stay. We lost many friends when D became sick. Not because they were bad friends, but because they did not know how to talk to us in those stressful and hard times. The casual question “How are you?" I guess did not feel appropriate any more, since just by looking at any of us, you would already know the answer. And there were no right words to say to any of us. So don’t worry about the right words. There are no right words, or rather, all the words are just fine and right.

Here briefly: I had my twins almost 16 years ago, two beautiful and healthy girls. I was overjoyed and very proud. All was like it is in a normal family with small children until my twins turned six. Then D became sick, she had had this coming her way for a long time, but it took six years to develop. Since she had her first seizure her life was never the same again, nor mine nor of any of us. At nights when I tucked the girls in, D’s twin sister would hold D’s hand until D fell asleep and tell her bedtime stories. She tried very hard to fight D's nightmares. But she could not, none of us could, those nightmares came to stay.

There are many kinds of epilepsy and I don’t go into that now, maybe never, but she had the kind that has refused to go away. She has tried most of the drugs there are available, she has been on a ketogenic diet, she has vagus nerve stimulator and a year ago (last April) she had a brain surgery. We had high hopes (as did the team of doctors), she had a quick recovery from the surgery (which went as planned) but once we got home, the seizures came back and instead of slowly cutting down on the dose of the medicine, we had to give her more. If one takes a handful of medicines daily, it does affect one’s life.

Why do I bring this up now?

Because it affects me.
I don’t want pity. I don’t want you to say hang on and be brave because I do not have any other option and I’m not the brave one, D is the one. Or that we all are getting more meaningful things out of life because of epilepsy or that this is making us better, because that is not true. And please don’t say to me that this is God’s will, because honestly I would not bring this to my worst enemy and I don’t think he should have this kind of a grudge against D. D’s epilepsy has grabbed my life and I need to write about it once in a while.

While I know this is not the worst thing that can happen to anyone, this has been quite bad at times and still is sometimes. I’m not used to epilepsy and I’m not ok with it and I don’t accept what life with epilepsy has to offer. Even though I still do not accept this and probably never will, I can say that life goes on.

Life goes on, what a cliche! I thought when we had the diagnosis that my life stopped. And a part did forever. What I mean is that I still get annoyed a lot with myself and the universe when the car breaks (as if having a child with epilepsy is not enough), or when I forget to buy milk (because I’m in a hurry to get that overtired child home and even more when I have all the time in the world and forget the milk the same) or when I have to rip a sleeve or when I have wasted 50 grams (less than two ounces) of fibre on some fibre pursuit. Or I get mad at this child for spilling the milk on the floor or for not doing her homework or for her behaving like a teenager. I have dreams, you can guess what my number one dream is, but it does not rule out for dreaming of e.g. a perfect sweater I will knit one day. Having epilepsy did not stop the other things happening, both good and bad.

D is feeling quite well at the moment, better than never since she became sick (please knock on the wood here), the side of me that has seen many ups and downs, is happy about "a good phase", but the optimist wants to see this as a way for total recovery. If not a life without medication but at least a life without seizures, see; I’m willing to negotiate. Please remember that this is what I feel, D has a mind of her own and maybe one day she will share her own thoughts.

I was a passionate quilter for years, I knit but my passion was in quilting. Then D had epilepsy, she was feeling very ill for many years and I had to sit hours quietly by her bedside. I could not read, because I thought that she needed my strength as well and I did not want to occupy my mind with stories. D was a bright girl even then and she started to worry quite soon that epilepsy is ruining my days, I did not get to do my things, because I had to be there taking care of her, so I used to tell her that she was not ruining anything because I loved knitting and she had again given me an opportunity to knit. There have been many visits to the hospitals and many shawls and lots of socks and occasional sweaters have been knit, some good and some not so good. If there was any justice, at least my knitting under those tiring circumstances should have turned out beautiful.

Writing this has taken most of my morning. Now it is the time to go and wake up D for her medicine. That is how her day starts.
After waking her up, I think that I will spend time with the wheel again. These are Merino singles.

90 comments:

  1. barb outside boston14:25

    Lene, I feel privileged you allow us a glimpse (or more, as in the last 2 posts) of your life. The thing about knitting blogs is they don't seem to be just about knitting; they also are about how knitting fits into our messy, complicated lives.
    So thank you for sharing this, and thank you for the last post also--your grandmother was very like mine, except mine was a few decades older and came to America almost a hundred years ago. But she was always Finnish.

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  2. Lene, thank you and D for trusting us with your life, I feel honoured and priviledged that you can do. I can't do anything to help, would that I could but know that you are in my thoughts. It must be wonderful to feel the days changing over there. Here in Scotland we have just started to get warmer days and everything is sprouting well. Today is first day of British summer time.

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  3. a joy shared is a joy doubled and a sorrow shared is cut in half. we use our crafts to balance our life. we find out about our cyber friends- we are all human and made of the same cloth.
    I knock on wood.

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  4. Hey, Lene, my best wishes for you and for D. I knocked on my wheel and my loom for you -- that's the best wood I know!

    I remember the snow you describe, but it wasn't common enough where I grew up (Chicago area) to have a name. Here in Oklahoma snow rarely lasts more than a day before melting. I'd almost forgotten how wonderful it is to walk on a frozen lake -- and so different from skating.

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  5. I have a small understanding because my eldest son has ADD and Tourette's Syndrome which I also wrote about once on my blog.

    It's not fair to anyone, the child the parents or the siblings. But it is what it is. You are doing the best you can and that is all that can be asked. I send best wishes to you and your family for comfort and well-being.

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  6. my son has diabetes, since he was 10 years old. it´s of course not as dangerous as epilepsy, but it´s the same feeling, the disease is always present. I wish you and your family all the best.
    greetings from Iceland
    Frida

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  7. Bonjour Lene, and thank you for your last post. When I look at a knitting or a tapestry or an embroidery I always would know what was the thoughts of the person who has made it : I know that there is always feelings in it : For me it's offen , when I begin, sadness and anger, and the need to find a way to explain why this arrives to me. "This" is bipolar disorder which affects my daughter for ten years. I know too, that after a while, threads, wool and needles will give me peace. I hope that it's the same thing for you even if that is just for a short while . Très amicalement.

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  8. Aldona (from Maine)17:26

    Thank you so much for sharing ALL the parts of your life--not just the happy, fiber-y parts. And thanks to D for being willing to let you share your perspective on her life.

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  9. julie17:28

    I know the crusted snow, but I'm not sure Americans in general have a word for it - my kids call it "crusty snow," though.

    You say that you're not the brave one, but D is...I think D is brave because she has her mother's strength. The whole family is brave for dealing with such a frightening thing. I love how her sister would hold her hand till she fell asleep; that's bravery and strength as well.

    Love to all of you, and ear-scratches to the cat & dogs! :)

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  10. Angie17:33

    I will certainly continue to visit and enjoy your posts. Blogging allows us to share facets of our lives with others. Thank you for sharing an important part of your life with me today.

    Our snow in southern central Wisconsin disappeared with our thunderstorms last night. I enjoyed your description of the change in snow at this time of the season.

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  11. Thank-you for sharing. My thoughts are with you and your family - I wish you peace and renewed courage - and a happy ending.

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  12. Lene, as Barb and others have already said -- your fibre creations are only part of your life. If you wish to share more of it with us, we are priviledged. Who we are, the lives we live, these are the things that shape what we make; how can I refuse to share the pain when I am grateful that you share the beauty?

    I wish you all happiness.

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  13. Since knitting and fiber are a huge part of all of our lives and our children are "knit together in their mother's womb", it is only natural that the two intersect on our blogs at times. Somewhat like you, I wrote about my youngest daughter's heart problems and surgery on my blog, not because I wanted sympathy, but because it was at the forefront of my life and had been for so many years. I wish you peace and will pray for a cure for your D - with all of the medical advances, I hope that something new and miraculous will come along soon.

    We have "crusty snow" here in New England, but it doesn't last long - I love the way the sun gleams off of it, making it look like tiny diamonds on the ground, it snowed again last night, but spring has arrived (officially anyway) so there is hope for warmth, green grass and flowers!

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  14. i love the morning too lene—to have to myself alone so that the quiet can saturate me. i get mad at myself when i don't wake up early enough to have my several hours alone . . .
    thank you for sharing your story about your daughter.
    i will hope along with you that her story is changing at this very moment; that this lull in her seizures may last..

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  15. Rachel H18:14

    Thank you, and also D, for trusting us enough to allow us to share this part of your life as well as your fibre. I find with blog reading that while I may come at first for the fibre and knitting, I stay because of the whole person.

    I know very little of epilepsy, have nothing to offer but to say that I'm here, along with the wonderful people who have commented before me, to listen when you need us, and to support and wish peace and hope for you always.

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  16. My dearest Lene, blogs are about life because knitters are alive. When I had cancer, I found that many people just faded away in my life and they never came back -- probably because they didn't know what to do or say and then they were embarrassed. As a friend of mine says, "It's not good; it's not bad. It just is." D is a very strong, very brave young woman. Peace, Lene.

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  17. My first impulse was to say thank you for sharing your sorrow with me, with us. I remember the voyage you made last year, just before summer. I always thought it was related to health problems. I have a male friend who has epilepsy. He is married, he has been living happily with his wife for more than 20 years now. As for the rest, I think each stich we knit always carries a bit of our thoughts and moods and hopes and sorrows with it. Big hugs.

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  18. Thank you for sharing this piece of your life. I think that there are so many blogs out there that we can't read or find them all and so when we find the ones we like we continue to read them. You have included other parts of your life and family before and that is how your blog is. Our blogs are personal so I think we should be free to write what we want and need to.

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  19. Thank you, Lene. For sharing the darker parts of your life along with the light. In my eyes seeing the whole makes it even more beautiful.

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  20. In searching for words to form part of a eulogy at my Aunt's funeral my sister & I found a quote 'everyone dies but not everyone lives'. You and your daughters live. Simple. You choose to share your life with us in 'cyber (or is it fibre)space & for that we are privileged.I came across some research on the benefits of blogging. They were:
    Blogs can promote active & critical thinking
    Blogging can be a powerful promoter of creative, intuative and associational thinking
    Blogs promote analogical thinking
    Blogging is a powerful medium for increasing access and exposure to quality information
    Blogging combines the best of solitary reflection & social interaction

    source: Drs Fernette & Brock Eide,

    In blogging we achieve much that is good. If we choose not to restrict ourseves to the narrow 'fibre' route then that's OK.

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  21. Scotlynn19:08

    As Rachel H said, I found you first through your knitting, but return for who you are. Your posts bring so much joy to my days. I am honored you wish to share your whole life...joys and sorrows. Spring is all about hope and new life. May your light infuse you with both!

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  22. Lene

    I think chronic disease in our children is harder than anything that can happen to ourselves. And as parents, we would take it on ourselves in a heart beat, would it be possible.

    There are days of wonder, and there are days of survival. Keeping the hands busy so that the mind can float free can be grounding.

    all the best.

    -Holly

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  23. Years back, a friend of mine lost her husband to accident; shortly afterwards her sister-in-law became ill and suffered permanent brain damage, and then her father had a stroke. We talked a couple of years later and I asked had some good things come of all the bad? Was the family closer for having gone through this? She said emphatically NO. NO good things came of the bad. Some good things came in spite of the bad. She would never stop hating the bad and it would never cease to hurt and affect her. And I thought that was fair.

    We get to choose some things and not all things. And some things are bad. They hurt us every day (some days more, some days less) and they don't change the fact that all the 'normal' daily annoyances might still irk us. Some days we have great joy, and then we look around and think "yet if only..."

    You've shown a great capacity for joy, a great ability to see beauty around you. I'm sorry that you and D have this unfair burden. I think it's only fair for you to say "hey, this is bad stuff." We will all hope with you for some improvement. And we all care about that bad stuff and how it affects all of your family.

    We are here and listening whenever and whatever you wish to speak. We aren't going away, because it is more than just your knitting that we have come to care about!

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  24. Obviously I'm jumping in a bit late in saying it, but as it seems nearly everyone has said, I'm honored to read more about your life. We aren't all knitting, spinning or weaving. To see the person behind the sticks and string is just another part of it. I've loved your blog since the moment I saw the first picture at a glance, and I still love it.

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  25. marjorie20:44

    We have had quite a bit of crusty snow this winter. I couldn't help comparing it to meringue; my boots would break through the thin shell into the snow underneath. I hope that sharing your daughter's story from time to time will lighten the load for you, for as you know, you have many friends here. And I do hope for a medical breakthrough for her. One of my daughters has also had medical problems (not epilepsy) and it is so hard to see your dear child going through so many difficulties. Do you have a support group? They can be very helpful. Thank you and your daughter for sharing.

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  26. You know what I can't stand? I don't want to offend anyone who reads this, but it's true - people who hear about the difficulties in our lives and respond by saying they'll pray for us, or that God has a reason for everything that happens, or that God is trying to teach us a lesson.

    The only thing I've learned is how to keep from kicking people in the leg when they say that.

    You have such a way with words, and whenever I read your blog it makes me feel like we're sitting in a cozy kitchen, talking over tea and cookies. It really makes me wish I lived in Finland. I've never seen "crusty snow" like you described - not strong enough to walk on, anyway, and definitely not strong enough to ride a bike on. When snow melts on top and refreezes, it's just a whisper-thin and delicate lace of ice on top, and it cracks if you walk on it.

    The last time I walked on a lake was 17 years ago, in high school. Now that I think about it, that was the first time, too.

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  27. Janet23:34

    Beaming you love from Seattle! What a strange world, where you write in the early morning way up north in Finland, and I can read your words and feel you all the way over here on a sunny afternoon in Seattle, and feel very connected despite never having met... I don't have a blog, but am a loyal reader and there's just something so wonderful and special about your blog, your writing and you...

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  28. Another layer to the story of your life that I've been reading - thank you for sharing. You do not have my pity, but rather I am glad D has such a family to support her on her journey.
    And the spinning looks beautiful!

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  29. Kathleen C.23:59

    Lene,
    You are right... there are no "right words", but the impulse to say something, as if we could make the bad go away by saying just the right thing, is in us anyway.
    So... I send you not pity but sympathy and good wishes. I will knock on all the wood I can get my knuckles on. And I will continue to read your story, to share as you will, in the joys and sorrows of your life. And hope that knowing that there are those out here will listen, and give a damn, will help in some small way.

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  30. Anonymous00:28

    Here in Vermont we call the crust snow -- sugaring snow. This is the time of year people are busy tapping maple trees and boiling the sap into maple syrup. I have been reading your blog for months now and enjoy it. Your daughters sound wonderful in how they look out for each other. sue

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  31. annie00:44

    Dear Lene, we came first to see your beautiful knitting and other crafts. We stayed as much for your writing as for that. Thank you for sharing...it makes us feel trusted. I wish you and your family fewer and fewer frightening moments until they are gone. And yes! We have crust snow in Colorado but spring is definitely here now.

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  32. Jeannie01:49

    I'm knocking on wood. Thank you for trusting "us" enough to share.

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  33. Emily, USA03:34

    Thank you for your beautiful words. My oldest child is autistic, and though many parts of his life are the same as any one's some parts are not, and can never be. Truly, sometimes all a mother can do is keep getting up in the morning, and never give up. Blessings to you. May the seizures finally stop.

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  34. Many of us have had to deal with some really tough times in our lives and we do our best to cope gracefully. I have found that knitting and spinning have helped me; there is something in the creativity and the repetition that is quite soothing.

    We also get crusty snow, but it is short-lived. The spring mud season follows on its heels and lasts quite a bit longer.

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  35. A few days ago my middle daughter stopped me in my tracks. She was just chattering away, and she suddenly said "everything comes out right in the end. If it's not right, it's not the end." I hope for you, that will be your and D's story, too.

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  36. Lene,

    Thanks for sharing that, its part of who you are. I agree that blogs become about everything and its in the sharing of our totals lives that we really connect with one another. I feel blessed to be let into your life a little more.

    Kate

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  37. Jean S07:44

    Ah then, your post about your Grandmother resonates even more....

    One of my nephews has a very mild form of epilepsy; a college acquaintance had a rather severe form...what a curious, frustrating, mysterious disease. I am so sorry you lost friends through all of this--and hope you feel supported by all of us out here in this wide old world.

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  38. I can't fathom what it has been like for you and for D. I'm glad that both of you feel able to share, at least some of what is going on, with the world. You and your family are in my thoughts. Feel free to share what you like and when you like. We will be here.

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  39. I love when the snow gets like that too.
    That is so amazing to be able to walk out onto the lake when the snow is 'sugaring' (that is what we called the crusting effect of the snow when I lived in New England.)
    I love this time of year.
    Things are thawing, trying to bloom, the birds are returning from their long journey, etc..
    Although to was 75 degrees Fahrenheit in the afternoon.
    I am glad for the warming weather but that is much to warm yet for March! :)

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  40. Steph12:06

    Well, I almost didn't post a comment as I didn't know what to say. But I read your blog a lot and don't comment. This time I will.

    You are wise to understand that some things can't be made to always turn out for the best. And sometimes it helps to get mad and sad. It is just life, not fair, sometimes bad. Not personal at all. It just is.

    I have no practical advice to give. But I didn't want to turn away.

    You write well and I am an avid reader of your blog. Neither your blog or your crafts are done in isolation. Everything of you goes into them. A good post by both you and D for giving her consent to post too.

    Blessings,
    Steph

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  41. As ever, your blog is wonderfully written. Do not be afraid to share your thoughts with us, your readers - we are honoured you confide in us. I touch wood for D and feel for you in your pain. Thank you for sharing. My cousin had temporal lobe epilepsy and I know the shadow it casts over a family. Your spinning is beautiful and I can understand the solace you find in the rhythm of crafting. My thoughts are with you and your family.

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  42. Thank you for sharing that part of your life with all of us. I don't know what to say, as I know that feeling of having a part of you ripped away never to return when a child is diagnosed with a chronic illness. The people with the illness are definitely the brave ones. My son starts his day with a handful or two of tablets, for a different illness to D. From one heart with a bit missing to another, thanks again for sharing.

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  43. I love visiting your blog and I think its good that you are able to talk about your life and share it with us, be it good things or sad things.

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  44. Kathy16:18

    Lene,
    Like the other commenters, I feel compelled to tell you that we would do anything we could to lighten your load. Please tell D to try to keep smiling and look for the best in every day. My mother is the eternal optimist - she can always find the silver lining in every cloud. In my limited way, I try to do the same. Our thoughts are with you and D.

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  45. Anonymous16:55

    Epilepsy is so hard - watching some one you love suffer through seizures, through the disorientation before and after, hopes rising and crashing when treatment doesn't work, all you can do is provide the most loving and supportive space you can to help them bear the confusion and pain. And, of course, there is the knowledge that for some kinds of epilepsy, this disease can take their life some day, and will make any other illness they suffer more difficult.
    Thank you so much for sharing this. My experience with epilepsy in a loved one left me convinced we all need to try to get people familiar with it, so that it won't be a terrifying mystery and there will be a tiny bit more understanding from people who had no personal experience with it.
    Thanks.

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  46. True friends listen, I find, better than they talk. Meaning, I may not know what words help or hurt, but I'll listen to you when you need to get them out.

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  47. Anonymous17:26

    Lene, Thank you and D for sharing your lives. Sometimes these life challenges just are not fair. I have some small understanding because my nephew became both severely autistic and epileptic after his first DPT vaccinations and underwent the the vagus nerve stimulator implant about 2 years ago. It did not work as well as we had hoped, but the ketogenic diet seems to work a little better. I wish you and your family all the best. And, yes, knitting and other crafts are excellent stress relief. Hang in there! Mary in CA

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  48. Wow, there really aren't any right words, are there? I have been staring at this screen trying to say something, but I suppose it's my own arrogance to think that not only could words make it better, but that they would be my words. Anyway, I send my warmest thoughts to you and yours, and as heartbreaking as it is, the image I have in my head of one little girl comforting the other is so beautiful. Thanks for that.

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  49. Anonymous18:25

    If you are interested in new treatments for epilepsy, please go to www.clinicaltrials.gov and in the large Search box, type in epilepsy. You could try her specific type of epilepsy to refine your search. This lists over 100 ongoing studies for treatments of epilepsy, probably most of them here at the National Institutes of Health, in Bethesda, Maryland. Research here is funded by the US government, and treatment is free and open to those who meet study entry criteria. There is a free shuttle from the airport, meal stipends, and a Children's Inn where you can stay free during study visits. If you do come, please blog about your intention and I will e-mail you my address. I'd love to meet you. Good luck. Ellen in Virginia

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  50. I feel privileged that you've shared this very intimate part of your life with us. Thank you for trusting and confiding in us. I really hope that the right therapy or treatment comes along--sooner rather than later.

    And of course your daughter is brave!--the apple doesn't fall far from the tree, as we say (have you got an expression like that in Finnish?)

    Your spinning is inspiring as always. I love the singles in the last photo--so rosy and cheerful. :-)

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  51. Toni K.19:55

    Thank you for being willing to share your whole life with us, not just the easy parts. It is very hard to know what to say when other people share difficult situations so all I have to say is "HUG" and you're all in my prayers.

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  52. Francesca20:25

    Dear Lene, I hope that having broken the ice about your daughter's epilepsy you will find the blog a way to get some comfort, not necessarily from people saying the right words (as you said, there aren't any), but by letting things out whenever you feel the need and knowing that there is a pool of positive energy around you. Not to get all new-agey or anything like that, but keeping things inside can make them worse. I hope the good phase lasts forever and that eventually your daughter will not need constant medication.

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  53. Lene, thank you for sharing these intimate details, and for me this post made a few other statements in past posts 'make sense'. I've thought for quite some time that you or a member of your family was having health crisis. Now, I know. My 2nd son, Avery, who is 32, has a major brain chemistry imbalance, and although not epilepsy, it's still a major health issue, and affects us all as a family.
    Please know, when I wake early in the morning,(I love that peaceful quiet also) and have my daily chat with the universe that I will include you, D, and your whole family, and send you peace, strength, love, joy, and healing thoughts for all aspects of your life.
    The spun fibre is beautiful.

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  54. Lene, I've been reading your blog for over a year now... and I don't intend to quit :) Thank you for sharing both your joys and hardships with us!

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  55. Irene Johnston23:19

    aebJust dropping in to thank you for sharing your pain. As human beings we are all interconnected, but it is only in expressing our pain that we can begin to ease our burden, if only for a moment at a time. Sometimes a moment's relief is all we get and I guess it has to be enough for now. Knitting has brought me much comfort in spite of living daily with a chronic illness, an illness that unfortunately has been passed down to my daughter also. I love your blog and look forward to reading more of your adventures in every aspect of your life.

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  56. Esther00:17

    Thank you for this door opened on your family life...Very touching and teaching...What can I add that haven't been written ? I wish you and your daughter a lot of strenght and determination, again and again...
    We called the crusty snow, "croûte"(we walk on the croûte...) in French, just like the crust of bread...We still have more than 1m on the grass and flowers in front of the house but everyday spring is coming a little bit more...
    Esther

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  57. Barb in Texas00:22

    Thank you, Lene. I found your blog through the Harlot's blog several mnths ago and check it daily. I love your stories (all of them) and your photographs of Finland and of your various projects. I will be back every day for as long as you wish to share with us. And I will continue to hope most fervently for a cure.

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  58. I have to confess I do not know much about epilepsy. Your post has educated me more about it. Take care.

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  59. I, too, understand your life, as my life changed 30 years ago with my son's cerebral palsy. Friends tell me what a hard life I have, but it is a life our family has adapted to, due to coming to grips with the parts we have absolutely no control over. Certainly we miss out on some things, but we make sure we live to the full, as much as we can.
    The fibre arts give me a richness through the experiences and people that they bring me, as they do you.
    I understand though, that part of both you and me, that still rages at times, not at the child, but at the whole situation.
    We will keep going, not because we are heroic, but because, as you said, it is the only course. Even though I live at the opposite extreme of the world to you, with completely different views out our windows (we have a drought here), I look forward daily to reading about your thoughts and projects, as I have since you started your blog.
    Thank you, Lene.

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  60. Emma02:32

    It is part of your daughter's life, and therefore part of your life. Part of you, even. It colours your view of the world, and how you live.
    It just is.

    Your spinning is beautiful. What do you plan for the y

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  61. Judith in Ottawa04:56

    I appreciate a glimpse of lives in different places in this world. We have some things in common as humans, knitters, mothers, but it's good to see the other sides to life. I appreciate your blog, and hope you know that every loyal reader is another supportive friend somewhere on this blue planet.

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  62. Thank you for sharing all of that. I haven't had the strength yet to talk on my blog about the most recent darkness in my life, but this post reminds me that, for the most part, we are all here, sharing our lives, because this has become part of our community as well.

    My love and thoughts go with you and D, and the rest of your family, and I hope that the situation improves, and that you find balance with it.

    I remember when my aunt died when I was in college, and a friend of mine said she didn't know the right words to say to me. And I remember giving her the saddest smile I had, and saying "Just say something. Anything is better than nothing."

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  63. What I have learned, is that the good that comes, is, simply, this: that when someone else finds themselves stopped by the unfathomable new rawness, by the same loss, not knowing whom to turn to nor what to do next, we who have been down that same road are the ones they discover they can turn to. We are the ones who don't turn our faces away from them. We are the ones who have learned how to be there for them.

    And when friends have turned away from us because they did not know what to say, we not only know how to be there for the next person, we acutely need to do so.

    And with that, they can find the comfort we had wished for for ourselves. We become what we had so needed.

    That. That is the good. But only we can bring it forth.

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  64. a cyber hug to you and D ((hug))
    thank you for sharing this part of your life with all of us.
    if wishes came true, there would be no more worries of seizures. I send wishes for peace and health.

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  65. Sharing this part of your life was very generous. It is a real gift to be allowed to see this much of who you are. Thank you.

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  66. Thank you Lene. All my best to you and your family! It's hard to be personal in this forum, but I always feel better when I let stuff out. It's cathartic, for sure, and also, if we can reach just one other person who might be going through something similar, then I think it's worth it. Thank you again.

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  67. Here in Michigan, winters are much warmer than when I was a kid. I remember a few times when there was such a strong crust on the snow that we could ice skate on it!


    There are so many unfairnesses in life, big and small. Your family has been dealt a very big one.

    My kid was a very difficult baby, screaming for no apparent reason for hours every day. Between the sleep deprivation and the screaming itself, we were worn to a nub. A well-meaning person told me over the phone that we are never given more than we can bear to handle. I very nearly hung up on her...............

    Someone who has not walked in our shoes should really not give us advice about how to endure........

    Along with your other faithful readers, I am sending good thoughts your way.

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  68. Jean18:04

    When you told us you were going on a trip last year I feared it was to do with your own health - now we all know it was something even harder for you.
    It must have taken so much courage to trust us as you have done. It is so unfair, and you are allowed to say that. We all have that little child's voice inside us that wants to say"It's not fair", so whenever it helps you, say it. You have shared so much of the good things in your life and work, you should feel free to talk of the hard bits.
    I hold you in my thoughts.

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  69. Epilepsy first-hander here....it's just a strange part of life, but it is a part of many lives. Courage! Thanks for bringing it up to the surface, Lene. I know it's a hard thing to talk about.

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  70. I think just maybe this is part (or most) of what blogs were invented for, dear Lene. So that we can share with friends around the world and know that we are not alone, are never alone in our pain. Can't you feel the whole circle gently touching you, and through you, D and the rest of your family? Thanks for letting us come close. We wanted to, as we want others to help us at time of need too.
    And by the way, quilting helped me through some bad times too...

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  71. M. Gail20:40

    Dear Lene, I don't comment often but have read your blog since its early days. I love your writing and your beautiful needlework but I come here daily because I have become very fond of you.

    You can write about epilepsy any time you want to and we will be here to listen because we care about you and your family.

    I wish all of you strength and comfort and will keep all of you in my thoughts.

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  72. Anonymous20:50

    Thank you for sharing with us the pain that you are going through. Difficulties in this life meant to be our lessons here, and I believe that God has given you the right "tool" so you can deal with the situation. For D, God has given her the best mother, a loving, supporting, patient mother that one can ever ask for. Somehow, everything was arranged for us, in such a way that we will never understand. When I was 13 years old, my life was completely changed by the turmoil of dirty and power hungry politicians. At the age of 16, I was on a very small boat, escaping from my mother land, knowing not much about the new land , if I ever got to see. Three days lost in the ocean, where the waves were so high that I thought that the ocean would swallow us in an instance. During those three days when I could only do was to pray, that this little boat could survive this journey. Back when I was very little, I remember that my mother told me that I need to pray to God, constantly, so He can be with me all the time, and if I need help, He will be right with me, instantly. That sounded very logically to me, and I have been doing just that, up until now. Time goes on, then one day, I went to a spiritual lecture about Immediate Enlightenment given by Master Ching Hai. Master Ching Hai did give me a different look at my life and help me understand why I am doing what I am doing. I am still learning and trying to step back one step and look at all the obstacles in my life differently...

    Best wishes to you and your family. With Love,
    M

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  73. D and her sister sound like pretty remarkable young girls. Thanks for sharing.

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  74. As a mother, I feel your pain and determination and fierce love and frustration and... We just do what we can do with what we have. I hope you find as much solace and comfort in fiber as I do in rough times and in joyful times.

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  75. Tracy02:00

    That's real life, the bad and the good both. Think of the things you made waitng by her bed and worrying and worrying. You took something bad and made something good out of it. Sorry if that's so vague. Please can we see some of your quilts some day? Thanks, Tracy

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  76. I am sorry to learn about your daughter's epilepsy. It must be so difficult. My son has Petite Mal seizurs and that probably does not even come close to what you are dealing with. I also have a brother who has Grand Mal seizures but they seem to be able to control them with meds.

    Your knitting is wonderful. I love all of the embroidery that you add. How did you learn to do all of the flowers?...and the spinning is amazing. I just bought my first wheel and I'm loving it.

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  77. I certainly will not leave your blog. I've always read it more for your compassion, intelligence, humor, honesty, and deep humanity more than for the knitting info. Wishing, once again, that I was a close neighbor rather than half way around the world...

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  78. Pat in Vermont17:05

    Thank you for sharing this with us. I, too lived with epilepsy for many years. My sister was born with a mild case of cerebral palsy and developed epilepsy when she was around 6-7 years old. It was scary, but fortunately, she has been able to keep it (mostly) in control. She is now married with two children and leads a very normal life. Also, one of our employees developed epilepsy with the birth of her son - she is also leading a full & normal life. I guess what I'm trying to say is that it is possible to have this illness and still have a fufilling life.
    I enjoy your posts - you must live in a beautiful place! And your work is gorgeous!!

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  79. The great thing about sharing challenges in our lives is that we learn that others have challenges as well, some bigger and some smaller. Depression runs in our family--serious depression. We hope that the alcoholism streak ended with my grandfather. You and your daughter are facing your challenges with grace--the best than can be said about meeting challenges!

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  80. big hug, Lene.

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  81. Thank you for sharing your thoughts and life experience w/us.
    A person never knows everything!
    I enjoyed learning from you.

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  82. I have lived your life through my niece who was diagnosed with grand mal epilepsy at 3 yrs old. She has all that you listed and then some.

    Stay strong and true to your daughter.

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  83. Angeluna12:38

    Lene, I was so touched by your story about your grandmother, an exceptional woman with a wonderful attitude on life. And it seems you also have exceptional children. I can only imagine how hard it is for you as a mother to be unable to protect your daughter from this mysterious reality of her life.

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  84. Lene, I wish you and D the very best. You will be in my thoughts and prayers.

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  85. Moby23:37

    Thank you for telling us, Lene. I'm sending you a hug from across the ocean.

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  86. I'm late to this, Lene, but I add my voice to the others to say I am glad you and D choose to share this part of your life as well. Sending you cyberhugs. Post as you will (or not) about epilepsy. As you say, it is part of your life and ALL parts of your life are welcome here.

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  87. Thanks to you and D for sharing a difficult piece of your lives. I, myself, find that writing is a good way to get things physically out of my body, like releasing a pressure valve. I hope that it will do the same for you. I'm enjoying your blog, the knitting and your writing.

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  88. My friend's sister had epilepsy ever since she was a little girl. Once when she was six, she was at the dock, jumping from fishing boat to fishing boat, and she had a seizure mid-jump and fell into the water. She almost died. They lived on a fairly remote island without a doctor or a ferry, so they had to drag her from the icy water and call a government helicopter to come and take her to Vancouver.

    Now, that girl is in her twenties and her epilepsy is gone. She is a competitive snowboarder and has her whole life ahead of her.

    I don't know anything, really, about epilepsy, but I wanted to let you know (as you probably already did know) that miracles are possible. Maybe your daughter will experience one too.

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  89. Anonymous19:03

    I was told about your blog site by my sister in Pittsburg, Pa. This is my first visit to your site and I found your comments on your daughter and her epilepsy to be so truly from a mother's heart. I know exactly what you feel. I have been the mother of 2 sons with epilepsy for 29 years. I also found it amazing to hear your heart felt words from half way around the world here in Southern Illinois. I hear those same sentiments voiced many times. I am the Executive Director of the Epilepsy Foundation of Greater Southern Illinois. We have a newsletter and I would love to mention your comments in a newsletter article. Let me know how you feel about sharing your life with one of the affiliates of the National Epilepsy Foundation in the USA. With great respect and total understanding - Ellen Becker. Belleville, Illinois My email address is ellenepilepsy@sbcglobal.com

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