So, you know... life is a bitch. A bitch because that shit is closely followed by death.
I think a lot about what will be the thing to tug me back to the keyboard and write. When I'm driving a million, jillion things drift in and out of my mind and for moments of time every single day, I am brilliant! I have the MOST IMPORTANT THING IN THE WORLD TO SAY. But then I get home and someone needs a hug, a sandwich, a clean ass, a stern word or a damn drink.
It has been a month of flux. And while I can say I am happier than I have been in years, there has been damage. Sadness. Grief. Stress. Tears. Layers have been peeled and the icky sticky underneaths have revealed gifts I wasn't ever prepared to have. I don't think I'm particularly worthy of good things (not feeling sorry for myself, it's just the way it is in the mind of Chez OBrien) but I am receiving my bounty with gratitude (a gift in itself).
Yesterday afternoon, at the memorial service for the 32 year old patient who died on our unit last week, I was thrust into the infinite space of love and light of a friend so precious. I don't touch her enough but yesterday, I couldn't let go.
How do you pound on the chest of a dead woman for an hour to give her newborn baby one sliver of a chance to feel her mother's warm skin one last time and then come face to face with her mourning and devastated family? How do you do that with grace and humility? My friend did that. My badass, beautiful, brutally strong friend.
Thursday, April 28, 2011
Sunday, January 23, 2011
Not far from the tree... sort of
Yesterday I realized that there is one fantasy I've had for my son's future is actually a guarantee. Guaranteed only by his Fragile X-dom.
My son will always be sweet. Will always love and respect women. Will never be a dick-head or a bully. He won't be aggressive or mean. Thanks to Fragile X, my son will be a good man and for that, I am grateful.
My son will always be sweet. Will always love and respect women. Will never be a dick-head or a bully. He won't be aggressive or mean. Thanks to Fragile X, my son will be a good man and for that, I am grateful.
Tuesday, November 16, 2010
11/16/2010
Dearest, loveliest, sweetest most confounding baby,
Happy birthday, son. Today you turn two. Today you embark upon your third year tucked up deep inside my heart & guts. The day you were born was strange and wonderful as we all knew it would be. Windy and warm and submerged in fluid. So much fluid. And then there you were: purple, motionless and HUGE. Within seconds, you were wailing, I was wailing and our adventure began.
Two years later, you are loving, tiny and endlessly sweet and trusting. Aside from your size, you haven't changed a bit. You have always been Lincoln. And you always will be.
I try and try and try to take the beautiful advice that we haven't lost a thing; that that imagined boy never existed. That it's been you all along. It's hard, though. Hard.
Maybe next year I'll tell you that I've stopped crying every day. Maybe next year I'll be braver, calmer and less itching for a fight. Maybe next year I will be closer to having figured out how to make my world smaller yet more infinite at the same time. Maybe next year, maybe next year.
I love you, Link and maybe next year you'll be able to say it back to me.
Happy birthday, son. Today you turn two. Today you embark upon your third year tucked up deep inside my heart & guts. The day you were born was strange and wonderful as we all knew it would be. Windy and warm and submerged in fluid. So much fluid. And then there you were: purple, motionless and HUGE. Within seconds, you were wailing, I was wailing and our adventure began.
Two years later, you are loving, tiny and endlessly sweet and trusting. Aside from your size, you haven't changed a bit. You have always been Lincoln. And you always will be.
I try and try and try to take the beautiful advice that we haven't lost a thing; that that imagined boy never existed. That it's been you all along. It's hard, though. Hard.
Maybe next year I'll tell you that I've stopped crying every day. Maybe next year I'll be braver, calmer and less itching for a fight. Maybe next year I will be closer to having figured out how to make my world smaller yet more infinite at the same time. Maybe next year, maybe next year.
I love you, Link and maybe next year you'll be able to say it back to me.
Friday, November 12, 2010
The unkindest cut of all
Yesterday morning I had a patient for about an hour post-partum. Lovely woman with the purest, sweetest smile. I walked in to meet her and found her baby ravenous at her breast, cooing in between gulps.
I read in her chart that she was from Somalia and while I wanted to ask her how she came to be in the States, it just never came up.
When the babe was whisked away to the nursery for his bath, it was time to get my peaceful, happy patient up to the bathroom to pee, change her gown and get washed up.
I'm a bit of an over-achiever when it comes to assessing perineums after delivery. While the mom is perched on the toilet, I hunker down like Johnny Bench with my peri-bottle filled with warm water and get a good look at the situation. Holy-fucking-bat-shit-craziness-from-hell. I was not prepared for what I saw. Was. Not. Prepared.
The nurse I got report from is a bit of a dolt and often leaves out pertinent pieces of information. I know this, so I am always geared up to do extra work when I take over on of her patients.
Yesterday, though? Yesterday I wanted to reach out and punch that nurse square in her face for neglecting to tell me that this woman had been subjected to a full, radical, female circumcision.
I wanted to curl up and cry right there on the bathroom floor. I'll never, never forget it.
I read in her chart that she was from Somalia and while I wanted to ask her how she came to be in the States, it just never came up.
When the babe was whisked away to the nursery for his bath, it was time to get my peaceful, happy patient up to the bathroom to pee, change her gown and get washed up.
I'm a bit of an over-achiever when it comes to assessing perineums after delivery. While the mom is perched on the toilet, I hunker down like Johnny Bench with my peri-bottle filled with warm water and get a good look at the situation. Holy-fucking-bat-shit-craziness-from-hell. I was not prepared for what I saw. Was. Not. Prepared.
The nurse I got report from is a bit of a dolt and often leaves out pertinent pieces of information. I know this, so I am always geared up to do extra work when I take over on of her patients.
Yesterday, though? Yesterday I wanted to reach out and punch that nurse square in her face for neglecting to tell me that this woman had been subjected to a full, radical, female circumcision.
I wanted to curl up and cry right there on the bathroom floor. I'll never, never forget it.
Sunday, October 31, 2010
Listen Up!
While we were in Sacramento at MIND one thing we got confirmation on and learned way more in-depth about is Link's speech delay.
Fragile X'ers have difficulty speaking for a variety of reasons:
~Their loose connective tissue can make it hard for them to move their mouths correctly to form sounds
~They can have a highly arched hard palette; also causing problems with sound formation
~The over excitability in their brains makes learning in general, very, very hard. Speech often takes a back seat
We learned that Link, at 22 months and 2 words, is very, very advanced. We were told to embrace the fact that this is considered "verbal" in the Fragile X world. We also learned that by age 3, we can expect him to have 10 words. And if he's lucky, he'll be mildly conversational by age 7. Speech development and anxiety are the two biggest factors in assisting young Fragile X'ers with keeping the IQ gap between themselves and typical children as narrow as possible.
Our boy has been getting speech therapy since 9 months of age. And about 3 months ago we incorporated some sign language. Out at MIND they stressed hitting speech hard and heavy. They said up the sign language. They said to use something called "prompting" to help him form sounds. And they also recommend medications. 4 of them.
Within a few days of being home, Lincoln's grandma Jeanne had a "Baby Signing Time" video in our mailbox and a little over a week ago we started the boy on one of his meds.
Today, while he was eating his snack he looked over at me and perfectly and precisely did the sign for "more".
Look out, people. The sweet Mr. Buddy is making his needs known. HALLELUJAH!
Fragile X'ers have difficulty speaking for a variety of reasons:
~Their loose connective tissue can make it hard for them to move their mouths correctly to form sounds
~They can have a highly arched hard palette; also causing problems with sound formation
~The over excitability in their brains makes learning in general, very, very hard. Speech often takes a back seat
We learned that Link, at 22 months and 2 words, is very, very advanced. We were told to embrace the fact that this is considered "verbal" in the Fragile X world. We also learned that by age 3, we can expect him to have 10 words. And if he's lucky, he'll be mildly conversational by age 7. Speech development and anxiety are the two biggest factors in assisting young Fragile X'ers with keeping the IQ gap between themselves and typical children as narrow as possible.
Our boy has been getting speech therapy since 9 months of age. And about 3 months ago we incorporated some sign language. Out at MIND they stressed hitting speech hard and heavy. They said up the sign language. They said to use something called "prompting" to help him form sounds. And they also recommend medications. 4 of them.
Within a few days of being home, Lincoln's grandma Jeanne had a "Baby Signing Time" video in our mailbox and a little over a week ago we started the boy on one of his meds.
Today, while he was eating his snack he looked over at me and perfectly and precisely did the sign for "more".
Look out, people. The sweet Mr. Buddy is making his needs known. HALLELUJAH!
Sunday, October 17, 2010
23 Months Old
I feel safe in confirming to the world wide internets that my boy has decided that walking around, getting from here to there on two feet, ain't no thang.
It's been two days. He ambulates like a belly dancer, arms swaying, abdomen driving the train, gut-wrenchingly sweet.
It's been two days. He ambulates like a belly dancer, arms swaying, abdomen driving the train, gut-wrenchingly sweet.
Saturday, October 16, 2010
Vanilla Sky
So there was a part of our visit (mine and Link's and my mother in law, Diane's) out to Sacramento that I was not entirely prepared for.
There were so many balls in the air for this trip. So much planning, wanting, waiting. There were messed up travel plans, missed flights, insurance snafus, incompetent office staffers. I was wound so tight to make this happen for Lincoln, for us, that I was wholly caught off guard for the parts that were about me. ME.
Since my son has an X-linked genetic disorder, he got it from me. ME. Simply, I am a carrier. I've known that rationally since we got Link's diagnosis. I never really felt it emotionally until now.
Why I have anxiety, depression? Why I worry? Why I feel overwhelmed and have a hard time coping? Why I have always, always had a hard time reading diagrams and understanding things like floor plans for fucks-sake? Fragile X, that's why. Why my father was so reclusive, quick to anger & not very bright? Fragile X.
I'm not supposed to wallow. I don't want to wallow. But I'm still crying almost every day. Usually just a little bit... in the car, alone.
Not supposed to think about what could have been, just what is.
But. BUT. B U T! If I had known sooner. If. IF. I F!
I feel like I ruined my son's life and I fucked up Penelope. I want these musings to go away and find a nice tidy home in hell where they belong.
They took my blood out in CA and I sit and I wait for the results of my affectation with Fragile X. I imagine the various outcomes and try to apply some sense to my life (MY LIFE. ME. SELFISH BITCH.) with each one. My gut is that I have a full mutation on one of my chromosomes. My gut is that me and my baby boy are the same. My gut is that I have lived for 40 years as one thing and I'm about to find out that that thing never existed.
There were so many balls in the air for this trip. So much planning, wanting, waiting. There were messed up travel plans, missed flights, insurance snafus, incompetent office staffers. I was wound so tight to make this happen for Lincoln, for us, that I was wholly caught off guard for the parts that were about me. ME.
Since my son has an X-linked genetic disorder, he got it from me. ME. Simply, I am a carrier. I've known that rationally since we got Link's diagnosis. I never really felt it emotionally until now.
Why I have anxiety, depression? Why I worry? Why I feel overwhelmed and have a hard time coping? Why I have always, always had a hard time reading diagrams and understanding things like floor plans for fucks-sake? Fragile X, that's why. Why my father was so reclusive, quick to anger & not very bright? Fragile X.
I'm not supposed to wallow. I don't want to wallow. But I'm still crying almost every day. Usually just a little bit... in the car, alone.
Not supposed to think about what could have been, just what is.
But. BUT. B U T! If I had known sooner. If. IF. I F!
I feel like I ruined my son's life and I fucked up Penelope. I want these musings to go away and find a nice tidy home in hell where they belong.
They took my blood out in CA and I sit and I wait for the results of my affectation with Fragile X. I imagine the various outcomes and try to apply some sense to my life (MY LIFE. ME. SELFISH BITCH.) with each one. My gut is that I have a full mutation on one of my chromosomes. My gut is that me and my baby boy are the same. My gut is that I have lived for 40 years as one thing and I'm about to find out that that thing never existed.
Subscribe to:
Posts (Atom)