today i will take my little sister
i will watch as she puts on her pretty wedding dress and stands and looks in the mirror.
i will hold her little veil on her head - just so.
i will stand back and admire her
her beauty
her youth
her hope
her joy
her love
her *being* loved
and i can't help but remember her the age my daughter is now. small and sweet with her tiny lips and big brown eyes while i dress her up like my little dolly
Thursday, July 14, 2011
Sunday, July 3, 2011
no such time.
people always told me " you'll know when the time is right"
or maybe you won't. maybe you won't know the right time, OR the right words, but suddenly there you are. and you don't feel you have any other choice.
tonight i took my boys to see the fireworks from my sister's front lawn.
shortly after getting there malachi started demanding Ivan play pretend with him. they always pretend to play whatever they are currently into, right now it means " angry birds" that silly game everyone has on their computers and IPODS
Generally Ivan loves to coach Malachi along in his pretend -escapades. But tonight...tonight he had REAL playmates. His cousins and two other fun little boys his age. Ivan really wanted to play REAL games..not just cater to Malachi.
Suddenly Malachi is screaming and bossing Ivan, commanding him to play with him. And Ivan? Ivan starts weeping. WEEPING. And when pressed- what does he say " I don't know what to do!!!!"
and you know why? because he didn't WANT to play with Malachi. He wanted to play with his peers. But he felt GUILT. guilt for not playing the way his brother was demanding him to play. Guilt for not WANTING to be with Malachi and cater to him.
he SOBBED . my boy just sobbed and sobbed. He wouldn't play with malachi, but now he could not even play with his peers because he was so beside himself with grief over his situation.
and I realized-
there's never a good time dammit.
So I walked my sobbing 7 year old boy to the van. and I said " Ivan. I need to talk to you. Malachi is not like the other kids. Remember how we talked about everyone being different? and some people's brains do things and think things differently than others? " Ivan interrupted and said " yes! I KNOW.." and tried to walk away, so I said " No. Ivan, I need you to understand. Malachi has an autistic brain. Ivan. Malachi has autism. And he's not trying to make you feel bad. He just doesn't know how to play with the other kids. He doesn't understand. "
Ivan just stood there. defensive angry scowl set on his face and said " I don't want to talk anymore- can I go now!"
and I said " Ivan. I need you to hear me. This is not your fault. You do not have to play the game with malachi right now. You can play with your friends and you don't have to take care of Malachi. *I* will take care of Malachi. Ok? you don't have to worry about him"
his lip started to tremble. and he swallowed hard and nodded his head. relief. mom will do it.
mom will take care of him. I can play.
and he ran off to join his friends.
I went back and sat next to malachi. Looked up at the fireworks and said " this one is for you" and we watched it explode in the sky.
or maybe you won't. maybe you won't know the right time, OR the right words, but suddenly there you are. and you don't feel you have any other choice.
tonight i took my boys to see the fireworks from my sister's front lawn.
shortly after getting there malachi started demanding Ivan play pretend with him. they always pretend to play whatever they are currently into, right now it means " angry birds" that silly game everyone has on their computers and IPODS
Generally Ivan loves to coach Malachi along in his pretend -escapades. But tonight...tonight he had REAL playmates. His cousins and two other fun little boys his age. Ivan really wanted to play REAL games..not just cater to Malachi.
Suddenly Malachi is screaming and bossing Ivan, commanding him to play with him. And Ivan? Ivan starts weeping. WEEPING. And when pressed- what does he say " I don't know what to do!!!!"
and you know why? because he didn't WANT to play with Malachi. He wanted to play with his peers. But he felt GUILT. guilt for not playing the way his brother was demanding him to play. Guilt for not WANTING to be with Malachi and cater to him.
he SOBBED . my boy just sobbed and sobbed. He wouldn't play with malachi, but now he could not even play with his peers because he was so beside himself with grief over his situation.
and I realized-
there's never a good time dammit.
So I walked my sobbing 7 year old boy to the van. and I said " Ivan. I need to talk to you. Malachi is not like the other kids. Remember how we talked about everyone being different? and some people's brains do things and think things differently than others? " Ivan interrupted and said " yes! I KNOW.." and tried to walk away, so I said " No. Ivan, I need you to understand. Malachi has an autistic brain. Ivan. Malachi has autism. And he's not trying to make you feel bad. He just doesn't know how to play with the other kids. He doesn't understand. "
Ivan just stood there. defensive angry scowl set on his face and said " I don't want to talk anymore- can I go now!"
and I said " Ivan. I need you to hear me. This is not your fault. You do not have to play the game with malachi right now. You can play with your friends and you don't have to take care of Malachi. *I* will take care of Malachi. Ok? you don't have to worry about him"
his lip started to tremble. and he swallowed hard and nodded his head. relief. mom will do it.
mom will take care of him. I can play.
and he ran off to join his friends.
I went back and sat next to malachi. Looked up at the fireworks and said " this one is for you" and we watched it explode in the sky.
Monday, June 27, 2011
bee's knees and elbows in wasp's nests
the woman in the blue car in front of me decided to brush her hair. it must have been quite a mess because she need BOTH hands for the job. I watch as one hand held a clump and the other tried to brush through it. the ENTIRE way down Johnson street. stop & go lights...over the bridge..all the while both hands off the steering wheel attending to what seems to be the most snarled head of hair that ever was. How does one's hair even get that matted? did she just get off a motorcycle? lose a bubble gum blowing contest - in the wind?
I continue to follow her all the way down johnson and then all the way down park ave. The entire time..both hands in her hair, eyes in the rear view mirror.
I don't know whether to be horrified or impressed. that lady has some talented knees.
I never understand how people can drive with their knees. I have never even considered trying to master that. I guess I just don't really feel motivated to work on a skill that could possibly end up killing me in the process.
it's like people who can ride a bike with no hands.just riding along without using the handlebars? why? obviously you're trying to show off. get a unicycle hot stuff!
I could never do it. I'd jack-knife that bike faster than you can say " elbow cast" .
of course I've never been that good at riding bikes anyway. I didn't learn until the 3rd grade. it was such a huge source of humiliation and shame for me. I remember being at a friend's house and trying to make up excuses for why we shouldn't ride bikes...
I still don't feel comfortable on one. There are too many cars around! where am I supposed to ride? what are the rules about turning? who invented those torturous seats?
it's a wonder anyone gets anywhere at all.
I continue to follow her all the way down johnson and then all the way down park ave. The entire time..both hands in her hair, eyes in the rear view mirror.
I don't know whether to be horrified or impressed. that lady has some talented knees.
I never understand how people can drive with their knees. I have never even considered trying to master that. I guess I just don't really feel motivated to work on a skill that could possibly end up killing me in the process.
it's like people who can ride a bike with no hands.just riding along without using the handlebars? why? obviously you're trying to show off. get a unicycle hot stuff!
I could never do it. I'd jack-knife that bike faster than you can say " elbow cast" .
of course I've never been that good at riding bikes anyway. I didn't learn until the 3rd grade. it was such a huge source of humiliation and shame for me. I remember being at a friend's house and trying to make up excuses for why we shouldn't ride bikes...
I still don't feel comfortable on one. There are too many cars around! where am I supposed to ride? what are the rules about turning? who invented those torturous seats?
it's a wonder anyone gets anywhere at all.
Thursday, June 23, 2011
exit
Ivan just walked down from upstairs with wide eyes and calmly said
" mom. there is a black bird upstairs"
please let this is not some sort of omen.
sure enough- darn bird snuck in through the vent in the room I have stripped raw to it's bones on our second floor.
after some ridiculousness he finally calmed down- LOOKED- and saw that the window was wide open for him, and simply flew out.
reminding me of how often we are too worked up to actually SEE our exit that is so clearly lit.
" mom. there is a black bird upstairs"
please let this is not some sort of omen.
sure enough- darn bird snuck in through the vent in the room I have stripped raw to it's bones on our second floor.
after some ridiculousness he finally calmed down- LOOKED- and saw that the window was wide open for him, and simply flew out.
reminding me of how often we are too worked up to actually SEE our exit that is so clearly lit.
Wednesday, June 22, 2011
life with autism
Autism- or - as "they" call it officially now- Autism Spectrum Disorder (same thing) it is not a shameful thing. it's different than some people, but not WRONG.
The first dr we saw when Malachi was diagnosed was kind of an asshole.
I was totally keeping it together and I asked him as calmly as could be " if this was YOUR son, what would you do?"
he looked at me and said " first..I would cry."
part of me gets it- deal with the emotional response. yes. I understand. But the other part of me is thinking- CRY??!! cry? that is your response? because it's a horrible diagnosis?? My son doesn't have cancer! he has autism! it's a learning style not a death sentence! fuck off!
But we go through all sorts of emotions over and over don't we?
it's a constant thing . one day you accept it and you move on and sometimes weeks go by and you don't even think about autism.
other times you barely survive 5 minutes at a time and all you can think about is the autism and how it's affecting your life and the lives of the other family members. and you have days when you are happy and embrace who your child is, and you have days when you DO want to cry. and that's ok too.
what it comes down to is just simply- no parent wants their child to struggle or have pain. on ANY level. EVER.
it's not any different for a parent of a child with autism than it is for any other parent. It's only that parents of kids who are dealing with something that is obvious and in your face- think about it a little more often.
when is the world just going to get to the point where we can accept that not only do some people not fit the " norm" but NO ONE DOES. there IS no normal.
lets just love each other for our differences . can't we?
give more understanding
give more patience
give more love
The first dr we saw when Malachi was diagnosed was kind of an asshole.
I was totally keeping it together and I asked him as calmly as could be " if this was YOUR son, what would you do?"
he looked at me and said " first..I would cry."
part of me gets it- deal with the emotional response. yes. I understand. But the other part of me is thinking- CRY??!! cry? that is your response? because it's a horrible diagnosis?? My son doesn't have cancer! he has autism! it's a learning style not a death sentence! fuck off!
But we go through all sorts of emotions over and over don't we?
it's a constant thing . one day you accept it and you move on and sometimes weeks go by and you don't even think about autism.
other times you barely survive 5 minutes at a time and all you can think about is the autism and how it's affecting your life and the lives of the other family members. and you have days when you are happy and embrace who your child is, and you have days when you DO want to cry. and that's ok too.
what it comes down to is just simply- no parent wants their child to struggle or have pain. on ANY level. EVER.
it's not any different for a parent of a child with autism than it is for any other parent. It's only that parents of kids who are dealing with something that is obvious and in your face- think about it a little more often.
when is the world just going to get to the point where we can accept that not only do some people not fit the " norm" but NO ONE DOES. there IS no normal.
lets just love each other for our differences . can't we?
give more understanding
give more patience
give more love
Sunday, June 19, 2011
dad
my birthday card from my dad this year :
"thanks for being there for the entire family-
fashion coordinator, counselor, comedian, artist.
We love you and are so proud of you"
"thanks for being there for the entire family-
fashion coordinator, counselor, comedian, artist.
We love you and are so proud of you"
Monday, June 6, 2011
just be.
yesterday I was sitting in the backyard with my kids and there was no breeze at all.
not a stir in the air. As I looked up,I saw one single dandelion " wish" quietly flying along, just like it was riding an unseen river, bobbing and swaying and turning..like the tiniest umbrella . with no help from big great all controlling MAN. with no help from us that little seed just obeys and moves and will settle and grow. it will not ask for anything at all. it will just be. and then when it's time is up it will die. it will not ask " why" .
not a stir in the air. As I looked up,I saw one single dandelion " wish" quietly flying along, just like it was riding an unseen river, bobbing and swaying and turning..like the tiniest umbrella . with no help from big great all controlling MAN. with no help from us that little seed just obeys and moves and will settle and grow. it will not ask for anything at all. it will just be. and then when it's time is up it will die. it will not ask " why" .
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