It's hard to know what to say about the last month. I could write a whole post about how every doctor you see when you've got an incurable brain tumor feels the need to tell you that you are surely dying. Or, as one kindly told my mother: "You will eventually succumb to this tumor." I could tell you that some doctors are gifted in their ability to communicate this kind of information clearly and humanely and that others are, well, not. I could tell you how impossibly beautiful the world looks. How the golden fall light makes the last of the leaves clinging to brown limbs seem somehow noble and full of promise in a season I had always believed to be an ending. How I cannot imagine what it would be like to look at the deep blue autumn sky and know that it will be my last November.
We all know we will die someday. But how does one live each day knowing that death is hovering nearby? Mentioning this to a friend he reminded me of how the Buddhists meditate on death so they can live more fully in the moment. That's what each day has been like since we got the awful news at the end of September: a meditation on death. Hard, but oddly full of peace, like the rest at the end of a long exhale.
When we got the news my brother asked me what I will do to cope and I replied without thinking: "I will live". My kids make it easy to keep that promise. They are so full of life and energy and hope and promise that I find myself craving their company.
Sami came in the house yesterday and breathlessly asked if he could use the umbrella so that he might glide gently to the ground when he jumped from the porch. Go ahead, I told him, knowing that in his mind the world is full of possibilities. And who am I to argue? I look at him and agree. Yes, it's possible: one day he might fly.
Oliver started working with a local university math professor a few weeks ago. He told her that he wants to learn algebra, geometry and calculus. He has surpassed my ability to teach him. When I come home each night from taking care of my mother he is already asleep. I go to him and adjust the covers, gently setting aside the heavy algebra book nestled next to him on the pillows. I can't get over how his face is changing, how he is growing and how full of possibilities the world seems for him.
A few weeks ago I was pretty angry that my mother's life has to end this way. I found myself wishing that if she couldn't die of old age that she could at least be taken from us quickly. But now I'm thankful for the time I have with her, for the chance to take care of her and to just sit with her quietly and to talk about the impossibly blue November sky. I've stopped trying to wrap my mind around what is happening. When I look at my kids I know that there exists a whole world of possibility-- of good things to come -- that I can't even begin to imagine. And maybe, just maybe, that's true of most things.
Wednesday, November 14, 2012
Saturday, October 13, 2012
For My Mother
I stepped into the hallway for a moment, trying to warm my extremities by walking the ten steps from the bed to the automatic doors directly across the hallway. The broken thermostat and the constant blowing of cold air from the vent above my chair was just one more thing to bear but at least it kept me moving. Over the course of four days, my short walk across the hallway had become a ritualized escape from the monotony of trying to find rest and solace in a place where none was offered. At this moment, though, in the not-quite-middle of the night, I stood listening to the hums and beeps all around me and I looked in to the room at you, sister, and watched as you folded one of the many blankets that we had scavenged and hoarded. Your features are gifts from our father, possibly the only one he ever gave you, but in this moment I saw the echoes of our mother traced in your profile. It was something about your determination salted through with resignation that made you the sum of her in that moment.
I looked down at my own hands, in the unloving florescent glow of way past midnight, and saw my mother there, too. I had always been ashamed of my hands, scored as they were with lines and the appearance of age even as a young girl. I thought with regret, too, about how I had often been ashamed of my mother. By how I judged her for being so injured by life, for losing the ability to trust and to give of herself freely. Not for the first time, I regretted that life had not been easy for her, that it was too straight a line between ugly events and violence to a young wife and mother who otherwise might have been quite different. Living with fear for more than a decade will change a person. My mother is the strongest person I know but her need for strength came at a cost to her and her five children. I don't think I have her strength, but I will finally appreciate these hands I inherited from my mother. To be reminded of her in years to come I will have to look no further.
It's not often that my siblings all gather in one place, and still rarer when our gathering is not punctuated by the endless pushing of buttons and rankling of nerves. But in that moment I saw reflected in our unity at her bedside what we must have looked like as children, when our lives were lived in a state of perpetual fear and uncertainty and we simply held onto each other and trusted. This is what she taught us under the very worst of circumstances. Raw emotion and a deep, abiding love for each other was what sustained us then and, thirty years later I see it will be the same. If it is true that one can only know deep sorrow for having also known great love then I am thankful my life has been rich with the gifts of the heart.
My mother left the hospital bed around which we had kept vigil. She returned to her own home with the mass in her brain that is quickly taking her from us. It is one more thing that we, her children, have to watch her endure. And it hurts like no other grief I've known.
My hands will go on to nurture and love. They will caress my children and soothe them through what is to come. They will get dirty in the act of gardening, a passion once shared by my mother. They will be entwined with my husband's hands as we face old age and, eventually, death. And they will remind me, forever, of a strong and proud woman whose gifts to me I'm only just beginning to fathom.
I looked down at my own hands, in the unloving florescent glow of way past midnight, and saw my mother there, too. I had always been ashamed of my hands, scored as they were with lines and the appearance of age even as a young girl. I thought with regret, too, about how I had often been ashamed of my mother. By how I judged her for being so injured by life, for losing the ability to trust and to give of herself freely. Not for the first time, I regretted that life had not been easy for her, that it was too straight a line between ugly events and violence to a young wife and mother who otherwise might have been quite different. Living with fear for more than a decade will change a person. My mother is the strongest person I know but her need for strength came at a cost to her and her five children. I don't think I have her strength, but I will finally appreciate these hands I inherited from my mother. To be reminded of her in years to come I will have to look no further.
It's not often that my siblings all gather in one place, and still rarer when our gathering is not punctuated by the endless pushing of buttons and rankling of nerves. But in that moment I saw reflected in our unity at her bedside what we must have looked like as children, when our lives were lived in a state of perpetual fear and uncertainty and we simply held onto each other and trusted. This is what she taught us under the very worst of circumstances. Raw emotion and a deep, abiding love for each other was what sustained us then and, thirty years later I see it will be the same. If it is true that one can only know deep sorrow for having also known great love then I am thankful my life has been rich with the gifts of the heart.
My mother left the hospital bed around which we had kept vigil. She returned to her own home with the mass in her brain that is quickly taking her from us. It is one more thing that we, her children, have to watch her endure. And it hurts like no other grief I've known.
My hands will go on to nurture and love. They will caress my children and soothe them through what is to come. They will get dirty in the act of gardening, a passion once shared by my mother. They will be entwined with my husband's hands as we face old age and, eventually, death. And they will remind me, forever, of a strong and proud woman whose gifts to me I'm only just beginning to fathom.
Tuesday, September 25, 2012
Thursday, September 20, 2012
Oh Dear Me!
I'm not doing very well in the consistency department of blogging, am I? I don't know what to say about that, except, well, I've got all these vegetable to chop.
Luckily, I can enlist the help of my minions!
But, I know: you are really tuning in here because you want to hear all the wonderful amazing things that my boy with the big smile is doing. And I won't disappoint you. Or rather, he won't. But first I'm going to make you watch this video:
Yeah, the quality stinks but you try taking a video while biking on a dirt path. But seriously, do you see how cute he looks in his bike shorts on his pink Trek? God, I love this kid! And nothing makes me happier than biking with my boy. Well, except for spending each afternoon with my two boys in our little "learning lounge". That makes me exponentially happy, my friends.
I wish you could see how eagerly Oliver races up the stairs every day when I tell him it is time for school. I wish you could see how proud he is of himself for being able to answer questions and fully participate in what we are learning. I wish you could see how my heart swells each time he gets up from the bed, crosses the room and happily sits down to "talk" about the ancient Greeks and Egyptians.
Last week Oliver and I had this exchange (my part was verbal, his written):
Me: So, do either of you remember anything interesting about ancient Egypt?
Oliver: They were very rich.
Me: Why do you think that?
Oliver: Because they buried that boy with all the gold.
Me: Which boy?
Oliver: King Tut.
Me: And how did they get so rich?
Oliver: Because the Nile gave them good soil for growing things and a way for transportation and trade. They could get the gold because they had extra crops.
Pages and pages of conversations like these litter every surface.
We've come a million miles in the last five months. Every day feels like a miracle. Every single day.
Luckily, I can enlist the help of my minions!
But, I know: you are really tuning in here because you want to hear all the wonderful amazing things that my boy with the big smile is doing. And I won't disappoint you. Or rather, he won't. But first I'm going to make you watch this video:
Yeah, the quality stinks but you try taking a video while biking on a dirt path. But seriously, do you see how cute he looks in his bike shorts on his pink Trek? God, I love this kid! And nothing makes me happier than biking with my boy. Well, except for spending each afternoon with my two boys in our little "learning lounge". That makes me exponentially happy, my friends.
I wish you could see how eagerly Oliver races up the stairs every day when I tell him it is time for school. I wish you could see how proud he is of himself for being able to answer questions and fully participate in what we are learning. I wish you could see how my heart swells each time he gets up from the bed, crosses the room and happily sits down to "talk" about the ancient Greeks and Egyptians.
Last week Oliver and I had this exchange (my part was verbal, his written):
Me: So, do either of you remember anything interesting about ancient Egypt?
Oliver: They were very rich.
Me: Why do you think that?
Oliver: Because they buried that boy with all the gold.
Me: Which boy?
Oliver: King Tut.
Me: And how did they get so rich?
Oliver: Because the Nile gave them good soil for growing things and a way for transportation and trade. They could get the gold because they had extra crops.
Pages and pages of conversations like these litter every surface.
We've come a million miles in the last five months. Every day feels like a miracle. Every single day.
Friday, September 07, 2012
What lies between Yes and No? A cookie, apparently
"Mom, can I have a milkshake?
"No. I just finished cleaning up the kitchen and it's time for bed."
"But I can make it myself. Besides, Oliver had the last two cookies while I was at soccer practice and I'm still hungry even though I ate all of my dinner."
This is a version of a conversation I have with Sami everyday about a million different things. He asks for something, I say "No" and then he gives me a hundred reasons why I should change my mind.
One of the things that must have been hard for Oliver, being mostly non-verbal and unable to communicate for most of his life, had to have been watching his brother get away with things, get out of things and work the situation to his advantage through the delicate art of negotiation. (And yes, sometimes this means that the kid just hammers away at me until I give up or give in out of frustration.) When you stop to think about how much of life is really open to negotiation you begin to see how much time we spend navigating those grey areas. When you realized that you could actually have another cookie if only you could get your mom to agree, when you understood that there was something between the "Yes"and the "No", you probably also began to develop your skills of bargaining, negotiation, wheedling, whining and pleading.
But lets face it: if you are non-verbal, you are at a tremendous disadvantage in this department. You might want another cookie but if whining or repeatedly saying "cookie" is your only way of getting what you want, you are at a distinct disadvantage. I know this because both of my kids are master whiners, but when Sami follows it up by promising to eat two servings of vegetables for dinner if I let them have another cookie, I'm much more likely to give in. I've been conscious of this for years and try to remember to be more flexible when Oliver's desires are in conflict with what I think is the right thing to do, like say when he he wants to have a snack before bed even though he's already brushed his teeth. It's much easier to just say "no'' to a kid who just can't talk back, to one who can't argue or negotiate, and then chalk his frustration up to the autism.
So I'm thrilled to report that my boy is starting to assert himself through the fine art of negotiation. And given that he has a fine role model in Sami, I'm pretty sure I'm doomed. Two days ago when I told him that he absolutely, positively could not go and play in the water AT ALL TODAY because of something he had done, he waited until we were finished with school and then wrote: "Maybe I could go in the water for a little bit now?" The "maybe" did the trick and in five minutes he was in his bathing suit and in the water.
Then today I told him that he absolutely could not have another cookie until he finished all of his math work for the day, he picked up the pen and instead of writing out the answer to the question at hand, wrote: "How about if I have another cookie and then finish my math?"
So just like that, at the ripe age of ten, Oliver pulled up his chair to the bargaining table and served himself a cookie.
(It was actually me who ate the last two cookies. I did it when Sami was at soccer and Oliver was in the shower. And I didn't have to argue or negotiate with anyone. It's good to know how to pick your battles!)
"No. I just finished cleaning up the kitchen and it's time for bed."
"But I can make it myself. Besides, Oliver had the last two cookies while I was at soccer practice and I'm still hungry even though I ate all of my dinner."
This is a version of a conversation I have with Sami everyday about a million different things. He asks for something, I say "No" and then he gives me a hundred reasons why I should change my mind.
One of the things that must have been hard for Oliver, being mostly non-verbal and unable to communicate for most of his life, had to have been watching his brother get away with things, get out of things and work the situation to his advantage through the delicate art of negotiation. (And yes, sometimes this means that the kid just hammers away at me until I give up or give in out of frustration.) When you stop to think about how much of life is really open to negotiation you begin to see how much time we spend navigating those grey areas. When you realized that you could actually have another cookie if only you could get your mom to agree, when you understood that there was something between the "Yes"and the "No", you probably also began to develop your skills of bargaining, negotiation, wheedling, whining and pleading.
But lets face it: if you are non-verbal, you are at a tremendous disadvantage in this department. You might want another cookie but if whining or repeatedly saying "cookie" is your only way of getting what you want, you are at a distinct disadvantage. I know this because both of my kids are master whiners, but when Sami follows it up by promising to eat two servings of vegetables for dinner if I let them have another cookie, I'm much more likely to give in. I've been conscious of this for years and try to remember to be more flexible when Oliver's desires are in conflict with what I think is the right thing to do, like say when he he wants to have a snack before bed even though he's already brushed his teeth. It's much easier to just say "no'' to a kid who just can't talk back, to one who can't argue or negotiate, and then chalk his frustration up to the autism.
So I'm thrilled to report that my boy is starting to assert himself through the fine art of negotiation. And given that he has a fine role model in Sami, I'm pretty sure I'm doomed. Two days ago when I told him that he absolutely, positively could not go and play in the water AT ALL TODAY because of something he had done, he waited until we were finished with school and then wrote: "Maybe I could go in the water for a little bit now?" The "maybe" did the trick and in five minutes he was in his bathing suit and in the water.
Then today I told him that he absolutely could not have another cookie until he finished all of his math work for the day, he picked up the pen and instead of writing out the answer to the question at hand, wrote: "How about if I have another cookie and then finish my math?"
So just like that, at the ripe age of ten, Oliver pulled up his chair to the bargaining table and served himself a cookie.
(It was actually me who ate the last two cookies. I did it when Sami was at soccer and Oliver was in the shower. And I didn't have to argue or negotiate with anyone. It's good to know how to pick your battles!)
Friday, August 31, 2012
Thursday, August 30, 2012
Sometimes it balances out in the end
Today was an awesome, incredible day.
I feel I can say this with assurance because I have yesterday to compare it to, which was decidedly not awesome. Yesterday being a day when I was trapped in a local department store -- at the mall -- for a half hour with an incredibly dysregulated boy while we waited for his brother to get a haircut. And the only reason I found myself inclined to enter the purgatory of the mall is because I'm too cheap to pay for a haircut for my boys and this particular store was offering free haircuts to kids through the month of August. And, because Sami is now -- ahem -- gainfully employed (finally pulling his weight), I had to do something about his hair. And to the lady behind the reception desk who looked at me with the evil eye? C'mon. I apologized for the mess those papers from your desk made when they landed on the floor and maybe by next August when we visit your establishment again you'll have found your sense of humor. Otherwise you might lose us altogether.
But Today! Today was awesome!! (Incidentally, isn't it funny how 90 really bad minutes in a day can make you feel like giving up altogether and that 90 totally awesome minutes can make you feel energized and ready to look for more challenges to tackle? Thank goodness life balances out like that.)
Today we started talking in earnest about ancient Greece. I was actually surprised by how much the boys already knew -- like Greece is where they speak Greek! But also that it is on the Mediterranean and that it is part of the European Union. And, as Oliver pointed out, the ancient Greeks loved math and gave lots of unique properties to numbers. For instance, the color of the number one was considered to be red. We had talked about all of this in relation to the myths we are reading and the history of number systems, so technically I shouldn't be surprised -- but, you know, they were paying attention and they are interested and that thrills me to no end!
Then, to totally make my day, I asked them if they knew what B.C. meant and, although Sami didn't know, Oliver wrote: "Before Christ". So naturally I asked him how he knew that and he said "I remember from when we learned about the Mayans."
Yeah. So last winter we took a trip to Mexico and in preparation we read a lot about the ancient Mayans. At the time, of course, I had no idea what Oliver was taking in -- this was before he could really communicate -- but he was always there, apparently taking everything in. I don't know why this kind of stuff still amazes me but it does.
Then, after almost an hour of talking about Greek civilization I thought they must be getting tired so I suggested that we pick another subject to work on and Sami said: "No, that's ok, this is really interesting." (and that, Ladies and Gentlemen, is why I love homeschooling!) I asked Oliver and he agreed.
So, yeah. Today was totally awesome, incredible. And I hope I won't have to pay for it in the balance of things until at least sometime next week.
I feel I can say this with assurance because I have yesterday to compare it to, which was decidedly not awesome. Yesterday being a day when I was trapped in a local department store -- at the mall -- for a half hour with an incredibly dysregulated boy while we waited for his brother to get a haircut. And the only reason I found myself inclined to enter the purgatory of the mall is because I'm too cheap to pay for a haircut for my boys and this particular store was offering free haircuts to kids through the month of August. And, because Sami is now -- ahem -- gainfully employed (finally pulling his weight), I had to do something about his hair. And to the lady behind the reception desk who looked at me with the evil eye? C'mon. I apologized for the mess those papers from your desk made when they landed on the floor and maybe by next August when we visit your establishment again you'll have found your sense of humor. Otherwise you might lose us altogether.
 |
| He's wearing that cap to hide all the wild red hair. |
Today we started talking in earnest about ancient Greece. I was actually surprised by how much the boys already knew -- like Greece is where they speak Greek! But also that it is on the Mediterranean and that it is part of the European Union. And, as Oliver pointed out, the ancient Greeks loved math and gave lots of unique properties to numbers. For instance, the color of the number one was considered to be red. We had talked about all of this in relation to the myths we are reading and the history of number systems, so technically I shouldn't be surprised -- but, you know, they were paying attention and they are interested and that thrills me to no end!
 |
| It was Sami's idea to map everything we know and, as usual, I just do what he tells me. |
Then, to totally make my day, I asked them if they knew what B.C. meant and, although Sami didn't know, Oliver wrote: "Before Christ". So naturally I asked him how he knew that and he said "I remember from when we learned about the Mayans."
Yeah. So last winter we took a trip to Mexico and in preparation we read a lot about the ancient Mayans. At the time, of course, I had no idea what Oliver was taking in -- this was before he could really communicate -- but he was always there, apparently taking everything in. I don't know why this kind of stuff still amazes me but it does.
 |
| Everything was already broken when we got there. Honest! |
So, yeah. Today was totally awesome, incredible. And I hope I won't have to pay for it in the balance of things until at least sometime next week.
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