I didn't where i should post this, but when I had moyamoya I wrote a poem about it in dutch, last night I tried to translate it.
Here it is

Afraid of going to sleep
Afraid of closing my eyes
So much to do
But there might not be a tomorrow
Insecure
Not again what happened than
Fear of repeating
Waiting for release
Night is my enemy, day my friend
Thinking back of that one night
Waking up different
Not again

I feel you. ;)

Lilian...

...my Cara has MM but too young to tell me her feelings but I feel it too...wondering what the morning will bring me...will she be affected further at night, will the sparkle in her eyes cease to exist, I pray when I lay her down to sleep that Jesus will get her through the night and she will still be Cara in the morning.....warm hugs and safe thoughts to you.

Hugs,  CarasMOM

Thank you, and I wish you the best with your daughter.

I was asleep when I had my first stroke, and after that I was always afraid of going to sleep, I didn't know if I would wake up again, and if I did, what would it be like. Would nothing have changed, or would it be worse.
It's terrible to live with it, and i hope your daughter gets well.

[smiley=hug.gif]Thanks so much for the wonderful poem Lilian.  That fits exactly to my situation  for me.  I had a stroke in the middle of the night in Jan. which led me to my diagnosis of MM.  I am still afraid to go to sleep each night that it might happen again.  It seems that the daytime is fine for me, but at night I get scared again.  Thanks again Lilian.
Laura :)

Lilian,

    Awesome poem!!  I'm glad I found a fellow writer. LOL.  I write about everything.  It is my release.  I can't go by a day without creating something in my head.  Unfortunately, some days it becomes very difficult to find either the time or the energy to write it down.  I was so mad yesterday.  I'll share my poem with you.  Maybe others have things they have written during their times of dealing with MM.  

   To everyone interested:  Maybe we can do a compilation of MM related thoughts and feelings.  I'm sure we all consider our darkest moments private, but maybe our dark times can help brighten others who are dealing with the same issues.  

    Lilian, your poem hits the heart of every person's fear.  THE DIAGNOSIS OF MOYA-MOYA!!  It stinks!! :(  I hope we'll get to share more.  Take care.

Lee

Each day I wake to live a life that's filled with nothing.
My soul, an empty shell of despair.
I cry because I hurt.
I scream because I'm angry.
My loved ones stay silent;
But they rage at the hate
That fills a heart once overflowing with love and kindness.
This horrible disease has taken over my mind.
Hate has taken over my life.
God, I'll never ask you why.
Because I know you will take care of all that I am.
But, I pray to you for peace to accept what I have been dealt.
I pray for the love to fill me again.
I pray for understanding for me and for them.
I pray in thanks for the blessings bestowed.
I love you, Lord.
It is done.
Thank you for the forgiveness.
I praise you for the peace.

Wonderful poem Lillian, it brought tears to my eyes. Tyler was visiting his dad when he had his stroke, I still get scared when he is away from me. He also had the stomach flu when he had his stroke, so anytime I hear of anyone being sick, I get paranoid Tyler will get sick and have another stroke. MM is very scary to live with.

Lee,
Your poem hit home as well. I am a strong believer that God gives us strength to overcome anything if only we are willing to accept His help. However, that doesn't make it any easier to understand the obstacles we are faced with.

Rena

Lee your poem is wonderfull, it's the way I felt it too, no day goes by without thinking of it.

I wrote some more poems, I'll try to translate them, so I can put them on the board.

You don’t know what it’s like
Waking up and not be able to
Of what you could the day before
Talking
Nobody understands you
Everybody lets you down
Again
Sadness and tears
Why me?

Lilian ;)

I really love your poems. They´re so full of emotions and as a mother I recognize my worries and fears in them!
Do you have more to share, would love to read them!!!

Annica

Here are the lyrics to a song I wrote not only for Sean but for my two other special needs boys .... you can listen to a sample of the song at www.indieheaven.com/artists/stevep ... the song title is "All That I Am is Yours"

All that I am Lord,   I give to You
All that I have Lord,   I give to You
Everything that I do, …    Everything that I say,
All that I am,   All that I have, is Yours


You gave me everything that I have today,
You gave me words to sing, You showed me how to pray

You made me just the way that I am today,
Your grace has made me whole, You showed me Your way.

All that I am Lord,   I give to You
All that I have Lord,   I give to You
Everything that I do, …    Everything that I say,
All that I am,   All that I have, is Yours

Lilian, Lee and Steve...

.....tears rolling down my cheek...reading the poems and ending it with Steves song...thank you all for sharing them and more !!!

Warm hugs,

CarasMOM

All of your words are beautul and thank you for sharing. It helps us all to know that we are not alone in this terrifying disease. I know from a family members veiw exactly what you meant Lilian, with your first poem, in two different ways actually. 1. from my moms point of veiw. She was awake when the hemmorage hit, but she went unconcious, and stayed in a coma for over a month. When she finally woke up, everything was different, everything was wrong. She couldn't communicate, couldn't walk, couldn't feed herself, or remember what had happened just two minutes earlier 2. From my own point of veiw. I still lived with my parents when all this first happened. I was asleep and woke up to my dad calling for me histerically that something was wrong with my mother. I got up and went into their bathroom to see my mom laying in the floor. I will never forget the sound of her breathing. I stayed with her while my dad called 911. I kept asking her to wake up, but she wouldn't. That will be two years ago on the 27th of this month and still to this day, alot of times when I lay down to go to sleep, I am overcome with panic of what I will wake up to. Just wanted to share that. Haven't really ever told anyone about that, actually. I would love to hear more poems if yall have or wright any more.                                      Nikki