Showing posts with label The Noggin. Show all posts
Showing posts with label The Noggin. Show all posts
3/11/11
3/4/11
An Asher video for your Friday. You're welcome.
AsherChickenStory_0001, originally uploaded by Heather of the EO.
I'm so terribly in love with him.
Have a good weekend, friends.
1/13/11
ya gotta do what'cha gotta do
He didn't want to go outside when Miles asked. He wanted nothing to do with it, actually.
Until he remembered what happens when they come in from outside.
His thoughts were something like this...Oh yeah...the warm-up cocoa...
which brought on
this...
Until he remembered what happens when they come in from outside.
His thoughts were something like this...Oh yeah...the warm-up cocoa...
which brought on
this...
{as he's running away he's saying, and then I really want hot cocoa}
{and that little blip of me at the end is from an old video I posted and am now trying to record over. Please forgive}
{and just pretend mystorage space office is super clean and orderly}
So. We put on pants and then socks and then snow pants and then a coat and then he added a scarf (of mine) and then a hat (of Daddy's) and then two mismatched mittens and then boots and then he went out for no longer than 5 minutes and then he was back at the sliding glass door shouting for cocoa.
And I quote, "I want cocoooaaaa, it's sooo coooold." (Repeat x 5)
The End.
P.S. All credit for that rockin' cool new blog header up there goes to my friend Sarah, who saved me from trying to do things I don't know how to do by doing them for me because she knows how to do them. And another thank you to the lovely Ann Imig, who came up with a tag line that I love. My heart. My gut. My boys. Indeed. And finally, a photo credit is due--Miles (yes, my very own 5 year old), my photog, snapped this Lego man photo on his very own. He's a genius.
{and that little blip of me at the end is from an old video I posted and am now trying to record over. Please forgive}
{and just pretend my
So. We put on pants and then socks and then snow pants and then a coat and then he added a scarf (of mine) and then a hat (of Daddy's) and then two mismatched mittens and then boots and then he went out for no longer than 5 minutes and then he was back at the sliding glass door shouting for cocoa.
And I quote, "I want cocoooaaaa, it's sooo coooold." (Repeat x 5)
The End.
P.S. All credit for that rockin' cool new blog header up there goes to my friend Sarah, who saved me from trying to do things I don't know how to do by doing them for me because she knows how to do them. And another thank you to the lovely Ann Imig, who came up with a tag line that I love. My heart. My gut. My boys. Indeed. And finally, a photo credit is due--Miles (yes, my very own 5 year old), my photog, snapped this Lego man photo on his very own. He's a genius.
1/12/11
a noggin is a tricky thing (an update for you)
On the way home from the hospital yesterday, Asher got the deliriously tired giggles. Things became a bit hysterical because his laugh is contagious and we were all laughing at nothing and something and then nothing again.
It was good.
Asher's MRI looked really good, which (of course) is VERY good news. The issue is most likely that his shunt is working too well. It's tricky to explain but brain valves like Asher's can have high pressure or low pressure. He seems to be having some low pressure issues. So the spinal fluid is draining out too fast, basically, which makes his head hurt and gives him a belly ache (since the fluid drains through tubing to his tummy).
So. There was a change made to what number his shunt is set on (they can do this from the outside, magnetically) (wow). Now we wait to see if he feels better within a week or so. If not, we'll go back to try something else, but we're hoping this will be all he needed.
Phew.
Thank you all so much for your thoughts and prayers. We really do feel them and need them. Thank you.
Now it's time to pretend I'm not an overly exhausted pregnant lady and get something DONE. The papers are piling, the dust bunnies climbing, the inbox is over-flowing and the cupboards are...NOT over-flowing.
Yawn.
You guys are the best...
It was good.
Asher's MRI looked really good, which (of course) is VERY good news. The issue is most likely that his shunt is working too well. It's tricky to explain but brain valves like Asher's can have high pressure or low pressure. He seems to be having some low pressure issues. So the spinal fluid is draining out too fast, basically, which makes his head hurt and gives him a belly ache (since the fluid drains through tubing to his tummy).
So. There was a change made to what number his shunt is set on (they can do this from the outside, magnetically) (wow). Now we wait to see if he feels better within a week or so. If not, we'll go back to try something else, but we're hoping this will be all he needed.
Phew.
Thank you all so much for your thoughts and prayers. We really do feel them and need them. Thank you.
Now it's time to pretend I'm not an overly exhausted pregnant lady and get something DONE. The papers are piling, the dust bunnies climbing, the inbox is over-flowing and the cupboards are...NOT over-flowing.
Yawn.
You guys are the best...
1/11/11
a noggin is a tricky thing
Please bear with me while I pretend I know how to make a blog header and then that I know how to make it fit and then that I know how to make it not blurry. I don't know how to do any of these things, but I was pretending. Now I'm getting help from a friend, so we are "under construction."
~~~~~
I mostly did this header thing because I thought it would be a creative way to distract myself. Because for the past week or so Asher has been complaining of headaches and has some other possible symptoms of a shunt malfunction. We've been communicating with his team at the hospital and watching him closely. We have an appointment for an MRI today, so we'll be traveling a couple of hours and then continuing to hope for the best.
Yesterday when he woke up Asher announced, my brain is making me sick.
Oh my heart.
There are so many variables to consider with a child with hydrocephalus. I mean, it could be that his sinuses are bothering him or that his eyes are giving him trouble. It could be nothing. But then it could be that his shunt is not working right and that would mean that the spinal fluid in his brain is not draining through his ventricles to his spinal cord...so we always choose safe rather than sorry and we get it checked out. Of course, this is never really all that easy.
Please hope with us that this is much more nothing than something.
Asher's MRI is at 2pm (CST). Let's all alsopretend hope that he's going to lie perfectly still for a good ten to fifteen minutes. He's three, he's good at that. Heh.
Thank you, friends.
"Cause that's what prayer do. It's like electricity, it keeps things going." - Aibileen in The Help
~~~~~
I mostly did this header thing because I thought it would be a creative way to distract myself. Because for the past week or so Asher has been complaining of headaches and has some other possible symptoms of a shunt malfunction. We've been communicating with his team at the hospital and watching him closely. We have an appointment for an MRI today, so we'll be traveling a couple of hours and then continuing to hope for the best.
Yesterday when he woke up Asher announced, my brain is making me sick.
Oh my heart.
There are so many variables to consider with a child with hydrocephalus. I mean, it could be that his sinuses are bothering him or that his eyes are giving him trouble. It could be nothing. But then it could be that his shunt is not working right and that would mean that the spinal fluid in his brain is not draining through his ventricles to his spinal cord...so we always choose safe rather than sorry and we get it checked out. Of course, this is never really all that easy.
Please hope with us that this is much more nothing than something.
Asher's MRI is at 2pm (CST). Let's all also
Thank you, friends.
"Cause that's what prayer do. It's like electricity, it keeps things going." - Aibileen in The Help
10/10/10
mystery
Dr. P. has enormous hands. When we met him about two years ago and knew he would be doing Asher's brain shunt surgery, Ryan joked, How is he going to manage surgery on such a small head with those sausage fingers?
I watched those same hands I've come to know (and maybe even love) as they circled Asher's head at his check-up on Thursday. He knows what he's doing. He knows what he's looking for. He runs his pointer finger and thumb along the valve (shunt) on the right side of The Noggin and he pushes a little to feel for something I don't understand. I was right next to this big man and my boy and I was vacantly watching because the fear I have as Asher's mom always rears its feisty head in the children's hospital. I float through it all while we're there, holding more tightly to that small hand and staring in wonder at x-rays and the yellow tape measure always wound and pulled snug around my boy's crown, for the measuring.
Dr. P. is so smart and exceptionally good at his job. We are in really good (big) hands. Our Asher is a patient in a long stream of people knocking down the door to get to Dr. P. We are blessed.
On Thursday, Dr. P. ran his hands softly through Asher's blond hair and I saw his nails, short as short can be, bitten as far as possible, cuticles mutilated at every edge. And I thought, even the brilliant Dr. P. has something in him that needs out. Of course...
Anxiety, sad stories of children lost and grieving parents, never being able to have all the answers, pressure, information, schedules, questions, fear...
This week was long and hard and I found myself grieving, wanting, failing...sitting around with a house that needs so much and kids that need so much and I felt so inadequate. And all I could do was just sit, looking around at all the needs unmet, getting more frustrated that I can't take the edge off anymore. I can't disappear and zone out with glass after glass of wine. The TV doesn't work for me and sometimes books don't either. I'm left with too much thinking.
None of it would work to bring me peace anyway and I know that. I find peace mostly in one place these days--in the company (online or off) of fellow alcoholics.
I emailed Ellie and I said that I miss drinking, in that moment I did anyway, because it seemed the only thing I could do, and she said this sounded like good news because instead of living in fear that I might drink at any moment, I've moved on to grieving. This was a really wise thing for her to say, as usual.
Drinking doesn't feel like an option anymore and that is an ironic sad goodbye. I've moved on to simply knowing alcohol is not what I really want, but sometimes just wishing I could escape somehow, and that's normal. For everyone. But instead of doing that I'm just sitting in it, in the feelings, sometimes that looks like something close to despair.
It hurts. It sometimes feels lonely and so I don't know what I would do without the knowledge of a higher power. Because I'm a bit afraid of church, I talked to a pastor about his new one with a hope-inducing name--Open Door, this week. He said he's never met a person in recovery who didn't know for certain they were not doing sobriety on their own. He said that whatever the person chose to call it, they knew that something spiritual was happening outside and inside of them. He also said that he wished there were meetings for everyone, and that he thinks church should look like those meetings, unconditional and accepting. I liked that.
Then on Saturday morning I sat with fellow alcoholics and three of them got stoned...Let me explain. Three people received stones with 2 years or 3 years or 4 years inscribed on them in beautiful colors. And we celebrated with coffee and good food and we each talked about the journey of those getting stoned. And there was no way around words like redemption and miracle and grace and faith. We were all in that same place with all different backgrounds with religion or no religion and we were all using those same words.
Some of us have nails bitten short and some of us can't keep our legs from bouncing with nervous energy. Some of us feel shy talking in a group and some of us nervously chatter on too long. Most of us smoke cigarettes and many of us drink too much coffee. And all of us know freedom from it all is entirely possible, if only we let go and release ourselves to the journey, expecting only progress rather than perfection.
When we grapple with spiritual things I don't know that it's proof we're looking for, or even the answering of our questions...I think it may be that we're looking to trust ourselves with a mystery, to trust the possibility that there is something greater than us...we who think only about ourselves most of the time. We twitching, nail-chewing, broken and hurting vessels just waiting to be willing. Willing to be filled up with good, if only we'd sincerely take the leap.
I think maybe we don't know if we can surrender to an unknown spirituality that our minds can't grasp and so our hearts stomp their feet and ask questions that can't be answered instead. And then we try to wrap our personal feelings and experiences around that greater thing. I think God is so big and he keeps trying to throw off these strings we tighten around his ways and maybe all he wants of us is a bit of awe that he can do things like end my drinking with a love I couldn't escape.
Maybe it just starts there and then snowballs into this unbelievable miracle and it's mysterious so we pretend it just can't be so. We say coincidence and we say proof and we fight doing anything blindly until we see that we ourselves are the proof. Open vessels just waiting.
~~~~~
I found hope in a room of broken people, drunks and addicts of every kind, and I could not deny the way our souls string together and come alive with recognition and a deeply rooted holiness. We experience freedom and the hairs on our necks rise up with the words of our friends. We are healing together and we are traveling with purpose. God created us this way, so clearly in need, so that we could reflect his face behind those walls and in our worlds. I am floored by that. I am just...amazed. We are able to sit together and live out love. There are few masks, there is acceptance, there are tears and there is genuine laughter. This is church like church may never be...without condition.
There is this palpable spiritual movement in those spaces, one that makes us unable to live in disbelief. I haven't heard anyone put words to it because it's a mystery. We can't wrap it up nicely and we can't describe something our minds don't understand. It is not religion. It just is.
~~~~~
Dr. P. has enormous hands with fingernails bitten down to the quick. I have no choice but to trust him with everything he knows that I do not. There is no possible way I could fix my sunbeam boy with my will or my way or my knowledge. I have to let go and allow him to work even while I bite my nails and bounce my leg and believe in the mystery of his knowledge.
Faith. It goes something like that. Face to the ground. No other option. Knowing my weakness. Letting go. Believing...because the alternative hurts too much to consider. Trusting. Seeing it through. Awe. And then acceptance that the outcome might not always be what I thought I wanted, but it is always what is best for the mystery.
I watched those same hands I've come to know (and maybe even love) as they circled Asher's head at his check-up on Thursday. He knows what he's doing. He knows what he's looking for. He runs his pointer finger and thumb along the valve (shunt) on the right side of The Noggin and he pushes a little to feel for something I don't understand. I was right next to this big man and my boy and I was vacantly watching because the fear I have as Asher's mom always rears its feisty head in the children's hospital. I float through it all while we're there, holding more tightly to that small hand and staring in wonder at x-rays and the yellow tape measure always wound and pulled snug around my boy's crown, for the measuring.
Dr. P. is so smart and exceptionally good at his job. We are in really good (big) hands. Our Asher is a patient in a long stream of people knocking down the door to get to Dr. P. We are blessed.
On Thursday, Dr. P. ran his hands softly through Asher's blond hair and I saw his nails, short as short can be, bitten as far as possible, cuticles mutilated at every edge. And I thought, even the brilliant Dr. P. has something in him that needs out. Of course...
Anxiety, sad stories of children lost and grieving parents, never being able to have all the answers, pressure, information, schedules, questions, fear...
This week was long and hard and I found myself grieving, wanting, failing...sitting around with a house that needs so much and kids that need so much and I felt so inadequate. And all I could do was just sit, looking around at all the needs unmet, getting more frustrated that I can't take the edge off anymore. I can't disappear and zone out with glass after glass of wine. The TV doesn't work for me and sometimes books don't either. I'm left with too much thinking.
None of it would work to bring me peace anyway and I know that. I find peace mostly in one place these days--in the company (online or off) of fellow alcoholics.
I emailed Ellie and I said that I miss drinking, in that moment I did anyway, because it seemed the only thing I could do, and she said this sounded like good news because instead of living in fear that I might drink at any moment, I've moved on to grieving. This was a really wise thing for her to say, as usual.
Drinking doesn't feel like an option anymore and that is an ironic sad goodbye. I've moved on to simply knowing alcohol is not what I really want, but sometimes just wishing I could escape somehow, and that's normal. For everyone. But instead of doing that I'm just sitting in it, in the feelings, sometimes that looks like something close to despair.
It hurts. It sometimes feels lonely and so I don't know what I would do without the knowledge of a higher power. Because I'm a bit afraid of church, I talked to a pastor about his new one with a hope-inducing name--Open Door, this week. He said he's never met a person in recovery who didn't know for certain they were not doing sobriety on their own. He said that whatever the person chose to call it, they knew that something spiritual was happening outside and inside of them. He also said that he wished there were meetings for everyone, and that he thinks church should look like those meetings, unconditional and accepting. I liked that.
Then on Saturday morning I sat with fellow alcoholics and three of them got stoned...Let me explain. Three people received stones with 2 years or 3 years or 4 years inscribed on them in beautiful colors. And we celebrated with coffee and good food and we each talked about the journey of those getting stoned. And there was no way around words like redemption and miracle and grace and faith. We were all in that same place with all different backgrounds with religion or no religion and we were all using those same words.
Some of us have nails bitten short and some of us can't keep our legs from bouncing with nervous energy. Some of us feel shy talking in a group and some of us nervously chatter on too long. Most of us smoke cigarettes and many of us drink too much coffee. And all of us know freedom from it all is entirely possible, if only we let go and release ourselves to the journey, expecting only progress rather than perfection.
When we grapple with spiritual things I don't know that it's proof we're looking for, or even the answering of our questions...I think it may be that we're looking to trust ourselves with a mystery, to trust the possibility that there is something greater than us...we who think only about ourselves most of the time. We twitching, nail-chewing, broken and hurting vessels just waiting to be willing. Willing to be filled up with good, if only we'd sincerely take the leap.
I think maybe we don't know if we can surrender to an unknown spirituality that our minds can't grasp and so our hearts stomp their feet and ask questions that can't be answered instead. And then we try to wrap our personal feelings and experiences around that greater thing. I think God is so big and he keeps trying to throw off these strings we tighten around his ways and maybe all he wants of us is a bit of awe that he can do things like end my drinking with a love I couldn't escape.
Maybe it just starts there and then snowballs into this unbelievable miracle and it's mysterious so we pretend it just can't be so. We say coincidence and we say proof and we fight doing anything blindly until we see that we ourselves are the proof. Open vessels just waiting.
~~~~~
I found hope in a room of broken people, drunks and addicts of every kind, and I could not deny the way our souls string together and come alive with recognition and a deeply rooted holiness. We experience freedom and the hairs on our necks rise up with the words of our friends. We are healing together and we are traveling with purpose. God created us this way, so clearly in need, so that we could reflect his face behind those walls and in our worlds. I am floored by that. I am just...amazed. We are able to sit together and live out love. There are few masks, there is acceptance, there are tears and there is genuine laughter. This is church like church may never be...without condition.
There is this palpable spiritual movement in those spaces, one that makes us unable to live in disbelief. I haven't heard anyone put words to it because it's a mystery. We can't wrap it up nicely and we can't describe something our minds don't understand. It is not religion. It just is.
~~~~~
Dr. P. has enormous hands with fingernails bitten down to the quick. I have no choice but to trust him with everything he knows that I do not. There is no possible way I could fix my sunbeam boy with my will or my way or my knowledge. I have to let go and allow him to work even while I bite my nails and bounce my leg and believe in the mystery of his knowledge.
Faith. It goes something like that. Face to the ground. No other option. Knowing my weakness. Letting go. Believing...because the alternative hurts too much to consider. Trusting. Seeing it through. Awe. And then acceptance that the outcome might not always be what I thought I wanted, but it is always what is best for the mystery.
10/7/10
it's just true.
It feels too flowery to say he's my sunbeam.
But he just is, this boy.
He was very very sad and scared a couple of nights ago.
I took he and his brudder to the firehouse
and there were so many people
in crowds waiting to check out the engines
and lines for the bounce house,
some people sitting and some standing
and in just a flash
he was gone.
We looked up and around
and back and forth
and I felt the panic.
The longest minutes went by
where I thought the thoughts
that kill a mom's insides
and then
there he was.
His face was crumpled
and his tears
were so big
and he thought I left him.
I ran for him
as he held a stranger's hand
and it seemed like a really really
long time
since I'd seen him last.
And it felt too flowery too say it to him
but I said those things you say right then,
I'd never ever leave you
I love you so much
I don't know what I'd do without you
Because it's just true.
WORD (to your Father) (Heh...get it? Instead of word to your mother I used father, since he said that stuff...) (You're welcome.).
Today I'm taking Asher to his check-up with his neurosurgeon, Dr. P.
It's a 2 hour drive both ways and Ryan is out of town for work and it's totally worth it. I think we're going to have a good time together, me and my little sunbeam.
~~~~~
This post is a part of I Should Be Folding Laundry's You Capture. Thank you, Beth.
I wrote something about how I know everything over at Mama Manifesto today. You can check it out if you'd like.
But he just is, this boy.
He was very very sad and scared a couple of nights ago.
I took he and his brudder to the firehouse
and there were so many people
in crowds waiting to check out the engines
and lines for the bounce house,
some people sitting and some standing
and in just a flash
he was gone.
We looked up and around
and back and forth
and I felt the panic.
The longest minutes went by
where I thought the thoughts
that kill a mom's insides
and then
there he was.
His face was crumpled
and his tears
were so big
and he thought I left him.
I ran for him
as he held a stranger's hand
and it seemed like a really really
long time
since I'd seen him last.
And it felt too flowery too say it to him
but I said those things you say right then,
I'd never ever leave you
I love you so much
I don't know what I'd do without you
Because it's just true.
~~~~~
I had been really frustrated with myself for forgetting the speaking gig I'd rushed too (late) that morning. Now I was just weary and my heart hurt for my Asher who got into bed saying he was still scared. It was a long and hard day. This morning my Dad said, "Maybe that happened so you'd know the speaking thing wasn't a big deal. Maybe it was a reminder of what really matters."WORD (to your Father) (Heh...get it? Instead of word to your mother I used father, since he said that stuff...) (You're welcome.).
Today I'm taking Asher to his check-up with his neurosurgeon, Dr. P.
It's a 2 hour drive both ways and Ryan is out of town for work and it's totally worth it. I think we're going to have a good time together, me and my little sunbeam.
~~~~~
This post is a part of I Should Be Folding Laundry's You Capture. Thank you, Beth.
I wrote something about how I know everything over at Mama Manifesto today. You can check it out if you'd like.
7/9/10
on the road again
{originally posted 6/1/09}
Yesterday, at my parent's cabin, Asher woke up at 5:00 a.m. I didn't want to wake up the rest of the house with screeches and screams, so I put Asher in the van and we went for a drive, not really knowing where we were going.
We saw the sun rise, some sheep, some cows, and long stretches of road. It was a beautiful start to the day, even if I wasn't at all happy to roll out of bed before the sun.
We drove to town and picked up a coffee and some diapers. Then with nothing else left to do, we sat in a parking lot. Asher watched Wall-E while I read a book and sipped my mocha. We did that for quite a while, lazy and content, until Asher said, "Mama...beep beep." And I asked, "Does that mean you'd like to start driving again?" He looked right at me and gave me his crooked grin, nodding so obviously that his chin would meet his chest as his little noggin went back and then down, very dramatically. I laughed, and then we were both a little more ready for our own private little adventure than we had been earlier.
Asher sat quietly, taking in the scenery and munching a graham cracker while I sat in awe of the beauty around us, and wondered how the songs shuffling through the IPod could be so perfect for our little journey. And then there was a shift in me and I wept. It was the strangest thing.
I was crying and laughing a little at the same time. Maybe it was the way the light was cutting through the tall pines. Maybe it was the words of the songs. Maybe it was just plain exhaustion. There was something changing in me, I know that for sure.
I thought about how I haven't really spent much time in quiet with Asher, not just the two of us. There's been nothing quiet about his life, nothing quiet about him. And here we were, driving along, and I was struck by the beauty of it, all of it. All of him. The beauty of the time with him on that drive, and of every moment I've ever had with him.
For the first time, I simply let myself see how hard our road has been. I finally sat with it, I looked at it and saw how very long this road has been. I saw the truth of it all and felt the relief of recognizing your own pain, and I cried all over it.
The day before we left, I sat with some lovely ladies who asked a lot of questions about Asher's condition. I haven't done that in quite some time, most people I'm around already know. So as I talked and watched the concern and curiosity around the room, I realized that I've always pushed away the idea that Asher's hydrocephalus was any kind of big deal at all. After all, there are much worse things, right? Why complain? Why dwell? Why make it more of a thing than it is?
But you know what? It has been really hard. Really hard. No, not as hard as a terminal illness or the loss of a child. No, but hard.
When other moms compare their everyday struggles with what's gone on with Asher, and they excuse their own pain by saying, "Oh I'm sorry...this is nothing like what you've gone through," I like to say, "Well, maybe it's not the same, but that doesn't make it easy."
I haven't been giving myself that same grace. It is one thing to be strong, to have a very true sense of peace that carries you on, and quite another to deny yourself the human need to weep, to validate your own struggle, to take a deep breath and let out a, "This is just plain hard."
During Asher's months (and months) of colic, and then his diagnosis and surgery, it's as if I put him in a car and just drove, just kept going, fixing, doing...being Mom. And yesterday, I put him in the van while I grumbled, not wanting to be up so early, not wanting to drive aimlessly. But because of the beauty that was handed to me on that unexpected journey, in the perfect songs swirling around us as the sun lit up the day, something lifted. Something hard turned to something good. So I laughed while I cried because I could see that without the early morning human alarm and the grumbly walk to the car, I would have missed it.
It wasn't until we took a break from the road, took a breath and rested, that we could look at each other and decide to keep going, feeling a renewed hope in the adventures ahead. In much the same way, I have a new perspective because of the road we've been on. One that has helped me to see things in a way I would have never been able to see them without the bumps and sharp curves.
It has been hard.
~~~~~
Today: We're headed to the Big City for an MRI this morning. (just kidding-see below) I'll keep you posted when I can. I have a feeling our little Ash Man is going to be just fine.Update. Again. - The MRI is canceled! I just got off the phone with the nurse practitioner, and because Asher has cleared out (got the poo out of the way of his shunt tubing) and because he says he DOES NOT have a headache today, we're going to simply watch him over the weekend and take it from there. He's acting completely fine and says things like "I not have mine headache." I'm just so glad.
Peace.
7/8/10
You Capture and a Noggin Update
Miles - 4th of July parade
R & S - 4th of July dinner at Nanny and Bapa's
our very own fireworks show
it was obviously quite riveting{These photos are brought to you by You Capture at I Should Be Folding Laundry}
And now for your Asher update:
First of all, thank you all so much for your comments and emails, your thoughts and your prayers. We feel them.
Asher hasn't had much success with that whole clearing out thing, despite our dietal (totally a word) efforts. So we're giving it until the end of the day, hoping for a fireworks-like explosion. *ahem*
Hopefully that will solve the issues with his valve tube, things will start flowing as they should, and his headaches will disappear. If there's no luck with the clearing out, I plan to call the doc in the morning.
The first thing Asher said this morning when he woke up was that when he was sleeping, he had a headache. This is obviously concerning, especially because he's reporting headaches almost every time he's been lying down. laying down? This is a sign of too much pressure on his brain, as you can imagine. Because when he is in a prone position (see how I avoided lay/lie/laying/lying there?) the pressure increases, just like it would if you had water in your ears from swimming or something.
I hope that makes sense. I'm tired. And getting anxious about my boy. I feel...icky.
Thank you for letting me get it out and for caring so much about us. It lifts me. It really does.
First of all, thank you all so much for your comments and emails, your thoughts and your prayers. We feel them.
Asher hasn't had much success with that whole clearing out thing, despite our dietal (totally a word) efforts. So we're giving it until the end of the day, hoping for a fireworks-like explosion. *ahem*
Hopefully that will solve the issues with his valve tube, things will start flowing as they should, and his headaches will disappear. If there's no luck with the clearing out, I plan to call the doc in the morning.
The first thing Asher said this morning when he woke up was that when he was sleeping, he had a headache. This is obviously concerning, especially because he's reporting headaches almost every time he's been lying down. laying down? This is a sign of too much pressure on his brain, as you can imagine. Because when he is in a prone position (see how I avoided lay/lie/laying/lying there?) the pressure increases, just like it would if you had water in your ears from swimming or something.
I hope that makes sense. I'm tired. And getting anxious about my boy. I feel...icky.
Thank you for letting me get it out and for caring so much about us. It lifts me. It really does.
P.S. To be clear, we're not rushing to the hospital because Asher continues to show no other signs of a shunt malfunction. He's in a good mood, playing, eating (sort of), sleeping well, etc. The anxiety comes because the headaches and worsening of them when he sleeps are red flags. I'm so grateful that if this is a malfunction, we're catching it long before he's lethargic, in even more pain, and in more...serious danger. So thankful.
UPDATE: Since writing this post, Asher has pooped. (woot) This is good, of course. We'll see if the pressure is relieved now. I've talked to a neuro nurse from our hospital and she met with a couple of providers of Asher's. They don't like that his head hurts worse when laying down. Lying down? SO. We have an appointment for an MRI tomorrow morning, and then we'll meet with Asher's Nurse Practioner again. It's good to have the appointment on the books, especially if he's still complaining of headaches tomorrow, after having "cleared out," today.
7/6/10
we had quite a long day, friends.
(In case you're new-ish to comin' around this space, Asher (almost 3) has hydrocephalus, a condition in which the spinal fluid produced in his brain basically gets stuck. So. He has a valve in place near his cloggable (totally a word) ventricles, to drain the fluid. The valve is attached to tubing that goes all the way down to his cute little round belly. This is all on the inside.)
For a couple of days Asher has been complaining of headaches. This is new, he's never really been able to articulate his pain or describe it. He's still a bit unclear in his telling of it (when asked where his head hurts, he runs his hand all over and around his noggin), but it helps that he can say things like he did today, when I came to his room for a good morning hello, to raise my mommy red flags,
"Hi Mama. Did you just wake up and have a headache like me?"
He has had no other symptoms, which kind of makes it worse. Cause if he did have other symptoms, we could assume he just has a cold or allergies or something...normal-ish.
So. Because of his hydrocephalus, I called his neurosurgeon's office in St. Paul, which is in a super great children's hospital. We're not taking any chances with this guy, you know?
Anyway. So we (Ryan and Asher and I) drove the two hours to the hospital, where Asher had x-rays, a CTscan on his head and belly, and then we had two meetings with a really smart neurological nurse practitioner.
Long story short, Asher's valve is not quite working right, but it's not working horribly.
This could be either because,
a) the tube that empties the brain fluid into his system (in his stomach area-after traveling down from the valve in his brain) may be getting restricted by...well, poop.
or
b) the shunt (valve) is simply malfunctioning.
We're hoping the answer is a). So what we're going to do is, well...um, clean him out. This will hopefully remove any...restrictions near his tubing.
The CTscan showed that the ventricles in Asher's cute little noggin are a wee bit bigger than his last scan, and that's not good.
So let's go 'round again. These ventricles may be bigger because of the poo or because of another problem/malfunction that we'll have to figure out later...and we won't know until we clean out the poo. phew.
If it isn't cleared up on its own, something else is obviously wrong and that could mean surgical correction, which would really suck.
I'm exhausted. Ryan is exhausted. Asher is exhausted.
Go team.
This could be either because,
a) the tube that empties the brain fluid into his system (in his stomach area-after traveling down from the valve in his brain) may be getting restricted by...well, poop.
or
b) the shunt (valve) is simply malfunctioning.
We're hoping the answer is a). So what we're going to do is, well...um, clean him out. This will hopefully remove any...restrictions near his tubing.
The CTscan showed that the ventricles in Asher's cute little noggin are a wee bit bigger than his last scan, and that's not good.
So let's go 'round again. These ventricles may be bigger because of the poo or because of another problem/malfunction that we'll have to figure out later...and we won't know until we clean out the poo. phew.
If it isn't cleared up on its own, something else is obviously wrong and that could mean surgical correction, which would really suck.
I'm exhausted. Ryan is exhausted. Asher is exhausted.
Go team.
We're back home now, ready for a good night's sleep.
Please hope with me that clearing out the little guy's system will do the trick and get things back to good.
And thank you so much to all of you who sent love across Twitter all through the day. I had a moment in the waiting room to read through your tweets, and they lifted me. Thank you.
Oh, and also. On the way home, Ryan asked me to list all the TV shows I can remember ever being totally into ever, even if I wouldn't like them now, as an adult...or more semi-sane person. I named a bunch of shows including Ed and Friday Night Lights and Monk and Ally McBeal...and then I admitted that in my early teen years I looked forward to one show every week more than any other show in the whole world.
Boy Meets World.
My husband laughed at me. A lot.
I just thought you should know.
(It was a really good show. So there.)
Lastly. Please say some prayers for my boy, if you do that sort of thing. If not, you can still think thoughts like "I hope it's just that Asher's poop was in the way and it will come out and he'll be fine."
I'm worried while I hold on to peace at the same time.
The End.
5/16/10
Okay
He says, wash mine hands, Mama. So I hoist his nearly three year old booty up to my stomach and we lean in over the sink. The water is shivery cold and so we hurry and he starts to force exaggerated shaking and teeth chattering, dramatizing as he has a tendency to do.
I grab the towel from the oven handle and we wipe wipe wipe together until I can't help anymore because he's got both of his little arms wrapped tightly around one of mine, one of his little legs following suit as he lifts it up off the floor to try to add it to the arm hug party. A chubby cheek presses the side of my wrist and he makes sounds that say he's warming up with my arm's willing assistance. Which is good because the other arm is busy reaching for coffee. My heart is filled with the goodness of he and his brother and their Daddy and at the same time, I feel a bit at a loss today, a loss of nothing but an idea, but a small void all the same.
I completely and totally thought I was pregnant this last week. But I wasn't. And that's okay, while it's also a strange nagging not okay. As anymommy (love her) replied (on Twitter), a negative test result is like an empty ice cream container. Yes. Both cause that heart-fall, that sinking moment of a wish stolen. Different of course, but the same.
Baby lust.
I have that. I really wanted ice cream and it was all gone. And I say that's okay because it's not like this last month was the final chance in all of eternity. And I say that's okay because these days, everything really is okay. Even if it's awful or hard, in the end it will be okay. Baby or no baby, disease or no disease, obstacle or no obstacle, pain or no pain...
Knowing that's true makes it okay to lust after a hopeful seed in your heart, even if you aren't sure if you're going to get what you want.
So I can still have faith that we just may get what we're pining after, desiring, while feeling that peace that reminds me that even if we don't, our faith and hope won't die with that dream. That they will stick around because they are in a shivery arm hug and in the greenest grass and the robin's blue eggs and a hearty chuckle and a full container of ice cream.
And after the arm hugging, my boy sat with wooden train tracks, struggling to construct the thing that he wanted most, lines of connection that go round and round. He was frustrated, getting half of them upside-down. I caaan't Mama, he said, heeelp meeee. So I did, connecting the pieces in a way I thought was best, even if it wasn't exactly the shape he had hoped for. It will work. And just as he always does, even when things don't turn out how he planned, he sat back and looked and considered and then chose to squeal Yay! while clapping his chubby little hands together. That's just who is, and I'm going to keep trying to be like him.
This post is a part of Five for Ten at Momalom.
11/11/09
Let's try this again...
Uh huh.
Asher Gets Glasses.
Take two:
Let the bribery begin!
Yes, that's a sucker. One that came with a,
"You can keep having treats like this one
if you don't break your glasses."
Uh huh. That's right. This is Project Bribe To Not Break...
So far. So good.
P.S. Yes, the last glasses (the busted up pair) were entirely different. You are not losing your mind. The ones pictured here are his back-up pair, already in use while we wait for a part from his broken glasses to come from DENMARK. And yes, the broken pair are being covered by a warranty. PHEW. Now let's talk about how cute he is...
Asher Gets Glasses.
Take two:
Let the bribery begin!
Yes, that's a sucker. One that came with a,
"You can keep having treats like this one
if you don't break your glasses."
Uh huh. That's right. This is Project Bribe To Not Break...
So far. So good.
P.S. Yes, the last glasses (the busted up pair) were entirely different. You are not losing your mind. The ones pictured here are his back-up pair, already in use while we wait for a part from his broken glasses to come from DENMARK. And yes, the broken pair are being covered by a warranty. PHEW. Now let's talk about how cute he is...
11/2/09
Go Bananas
Monday~November 2, 2009
Asher was just standing here driving me crazy, the way he was demanding a banana.
He shouts and he screams! I sigh and boil.
Then I turn to look at him and I see how he sticks his tongue all the way out to say nana, and it totally cracks me up.
What Asher gives off, his contagious joy, even trumps sibling rivalry. Most of the time.
It was right around this time last year that we found out he has hydrocephalus. (If you don't know what that is, it's what used to be called "water on the brain," where valves are not doing their job of getting fluid to the spinal cord...in short. Asher had a brain shunt (a valve that works) put in last December.)
From October, when we got the news, to December, when he had surgery, we really had no idea what to expect. I don't know that we even really understood what was happening. It was a blur of appointments with a neurosurgeon pointing at cat scans and saying things like, "Then we'll pass through here, to the center of his brain and tubing will be put in through his neck to his abdominal cavity," and oh my mothering heart was constantly weeping.
Just look at him now.
We were at our city's annual Halloween bash the other night and I thought, what a difference a year can make. There I was, sitting back all relaxed in our cute little Pleasantville-like city hall, all decorated with orange and black. Miles and Asher were going through the spooky tunnel over and over, and it hit me... I was having normal conversations with people, about the weather and pretty much nothing, and that felt good. Because last year at this same time I was a bundle of nerves, fresh off the phone with doctors, hearing this news I didn't want to hear. Back then, I could not stop telling everyone who innocently asked how are you all about my child and his upcoming brain shunt surgery, somehow slipping it into the conversation.
Seriously. Everyone. I suppose this is pretty typical, this need to be heard, for sympathy, for attention in the midst of fear and hurt.
Looking back, I can see the way I would nearly interrupt a person mid-sentence while they tried to talk about the weather. It's actually quite funny to me now...
How are you, Heather?
SHUNT! Er, I mean...fine! Shunt you for asking.
I can vividly remember the responses, some distracted or uncomfortable, and others truly feeling it with me, bringing me to tears with their big hearts in their eyes.
I can look back and laugh at how I would bring it up now because everything is OK. It's really OK. Asher is going to be just fine, even if he's not always. I'm so glad, of course, but I say that with a bit of a heavy heart because I know that there are so many people out there struggling through things that aren't even close to fine.
I think about that a lot. I've always beensomewhat uber-sensitive to what other people are feeling, but it's even more intense now, especially for people who are struggling through medical issues with their children or have lost a child or children. I'm not tooting my own horn here, this is not about me, it's about changes in me that came about because we've gone through something like this. Something that left us waiting through neurosurgery, wanting our baby boy back, and then sitting in pediatric intensive care, watching our child suffer through recovering.
I get something I hadn't really gotten before, and due to some crazy twist of grace, I'm glad to get it.
Asher may drive me bananas with the way he demands nanas, but he is here with me. And the thing is, I'm not saying that all of us who have children that are OK, or at least healthy-ish, should feel guilty about our children's good health, kicking ourselves for ever being grumpy about bananas. I don't think that kind of guilt serves any purpose at all.
But I guess what I am saying is that we should pound the ground with thanks, and then we should listen. Because there are people out there who can't stop themselves from sharing their terrible news, the news that's always there, that horrible thing that sits on everything in their lives, engulfing. These are people who need to be heard and they should be heard and I want to hear them. I want to stand there or sit here and say I know, but I don't know. I get it, almost. I'm just so sorry, friend, because there's nothing else to say and then just listen.
That's largely why we're here, I think. To listen. To just be quiet and listen, not steering away because we have no words, but simply being there.
So let's listen, big hearts in our eyes. Most of the time, that's all a person needs.
Why hello! Are you new here? Did Mama Kat send you? Isn't she the best? (and I'm not just saying that because she chose my Motherhood post, really.) Thank you for taking the time to come by and for "listening" to another post. I appreciate it muchly.
You can find my posts that aren't too shabby on my Hits page. I mean, you know, if you've got all the time in the world or something. Mostly I just want to thank you for coming by. And I did that, so I'll go now...
Asher was just standing here driving me crazy, the way he was demanding a banana.
He shouts and he screams! I sigh and boil.
Then I turn to look at him and I see how he sticks his tongue all the way out to say nana, and it totally cracks me up.
What Asher gives off, his contagious joy, even trumps sibling rivalry. Most of the time.It was right around this time last year that we found out he has hydrocephalus. (If you don't know what that is, it's what used to be called "water on the brain," where valves are not doing their job of getting fluid to the spinal cord...in short. Asher had a brain shunt (a valve that works) put in last December.)
From October, when we got the news, to December, when he had surgery, we really had no idea what to expect. I don't know that we even really understood what was happening. It was a blur of appointments with a neurosurgeon pointing at cat scans and saying things like, "Then we'll pass through here, to the center of his brain and tubing will be put in through his neck to his abdominal cavity," and oh my mothering heart was constantly weeping.
Just look at him now.
We were at our city's annual Halloween bash the other night and I thought, what a difference a year can make. There I was, sitting back all relaxed in our cute little Pleasantville-like city hall, all decorated with orange and black. Miles and Asher were going through the spooky tunnel over and over, and it hit me... I was having normal conversations with people, about the weather and pretty much nothing, and that felt good. Because last year at this same time I was a bundle of nerves, fresh off the phone with doctors, hearing this news I didn't want to hear. Back then, I could not stop telling everyone who innocently asked how are you all about my child and his upcoming brain shunt surgery, somehow slipping it into the conversation.
Seriously. Everyone. I suppose this is pretty typical, this need to be heard, for sympathy, for attention in the midst of fear and hurt.
Looking back, I can see the way I would nearly interrupt a person mid-sentence while they tried to talk about the weather. It's actually quite funny to me now...
How are you, Heather?
SHUNT! Er, I mean...fine! Shunt you for asking.
I can vividly remember the responses, some distracted or uncomfortable, and others truly feeling it with me, bringing me to tears with their big hearts in their eyes.
I can look back and laugh at how I would bring it up now because everything is OK. It's really OK. Asher is going to be just fine, even if he's not always. I'm so glad, of course, but I say that with a bit of a heavy heart because I know that there are so many people out there struggling through things that aren't even close to fine.
I think about that a lot. I've always been
I get something I hadn't really gotten before, and due to some crazy twist of grace, I'm glad to get it.
Asher may drive me bananas with the way he demands nanas, but he is here with me. And the thing is, I'm not saying that all of us who have children that are OK, or at least healthy-ish, should feel guilty about our children's good health, kicking ourselves for ever being grumpy about bananas. I don't think that kind of guilt serves any purpose at all.
But I guess what I am saying is that we should pound the ground with thanks, and then we should listen. Because there are people out there who can't stop themselves from sharing their terrible news, the news that's always there, that horrible thing that sits on everything in their lives, engulfing. These are people who need to be heard and they should be heard and I want to hear them. I want to stand there or sit here and say I know, but I don't know. I get it, almost. I'm just so sorry, friend, because there's nothing else to say and then just listen.
That's largely why we're here, I think. To listen. To just be quiet and listen, not steering away because we have no words, but simply being there.
So let's listen, big hearts in our eyes. Most of the time, that's all a person needs.
~~~~~~~~~~~~~~~
Why hello! Are you new here? Did Mama Kat send you? Isn't she the best? (and I'm not just saying that because she chose my Motherhood post, really.) Thank you for taking the time to come by and for "listening" to another post. I appreciate it muchly.
You can find my posts that aren't too shabby on my Hits page. I mean, you know, if you've got all the time in the world or something. Mostly I just want to thank you for coming by. And I did that, so I'll go now...
10/20/09
We'll see how this goes
Tuesday~October 20th, 2009
It was about this time last year that we found out Asher would need a brain shunt for hydrocephalus. I'll never forget that phone call, when at the beginning, I couldn't process the severity of his condition, what the nurse was saying, and I thought it meant a mother's worst fear could be happening to our family. But it wasn't. It was hard and scary, and of course watching him go through brain surgery at the age of one was no walk in the park for any of us, but it wasn't my worst fear, and I'm thankful for that every day.
Now Asher is Mister Good-To-Go, waking in the morning and taking inventory on his household,
"Bruddow go?"
"Your brother isn't up yet, honey."
"Tia go?"
"The dog is on her bed."
"Oh."
"Daaaddyyyy!!!" He runs at him and throws himself in for a hug.
He's pure unsolicited joy, that Ash Man.
He's joy even though he's had to deal with some kind of medical issue or emergency since the day he was born. Yeah, the day he was born. I'll never forget that either. How he drank and drank my overabundance of milk that comes way too quickly, then spit up and spit up and spit up until he aspirated and ended up in the NICU, tubes being forced in, screaming, me standing to the side, helpless and wishing I could breathe for him still.
It was as if he wanted to climb back in the womb and start over, since the very beginning. He was mad with colic, the kind that lasted nearly a year, and we just couldn't blame him. Every little and not-so-little thing just seemed extra difficult for him. Reflux, a digestive system that just didn't work right, a botched circumcision...you name it.
Everything that could go wrong, seemed to do exactly that.
So when I take Asher to appointments, I'm always a bit prepared for the not-so-good news. Yesterday this meant that I sat with an eye doctor while she tried to help me understand that his eyes don't work very well. She used a lot of big words that I couldn't focus on because my two boys were throwing raisins around the room and grabbing the doctor's um...chest. I took in what I could, wrote down the big words, and came home to call one of my closest friends who happens to be an eye doctor. She spoke English instead of Doctorese and I mostly understood.
In short, Asher needs glasses now so his right eye won't stop working completely. Basically, it's not really doing much, so the risk is that his brain will tell it to stop working. It needs exercise. He needs glasses (which will be the cutest thing I've ever seen in my whole life, I'm pretty sure.) He has some other issues with eyesight, including severe astigmatism and something else I don't really understand yet, to be honest.
And so we'll help. We'll get him his glasses. It could be so much worse. I'm so glad we know so early, just like we knew just early enough about his hydrocephalus, before any permanent damage was done with all that pressure on his brain.
I guess I'll probably never, as his mother, understand why he seems to always get the short end of the stick. It seems like it's just like that for some people, and sometimes it makes me angry and other times just sad. But the thing is, he's the happiest little person you'll ever meet, so mostly I just feel a peace under all the negative emotions that I'm supposed to feel.
Everything big and small that he goes through is shaping him to be the very best version of himself. He's always had an old soul look in his not-so-perfect eyes, andI gotta tell you, I'm looking forward to being a witness to how his wisdom and resilience will play out in his life.
He's absolutely perfect just as he is.
It was about this time last year that we found out Asher would need a brain shunt for hydrocephalus. I'll never forget that phone call, when at the beginning, I couldn't process the severity of his condition, what the nurse was saying, and I thought it meant a mother's worst fear could be happening to our family. But it wasn't. It was hard and scary, and of course watching him go through brain surgery at the age of one was no walk in the park for any of us, but it wasn't my worst fear, and I'm thankful for that every day.
Now Asher is Mister Good-To-Go, waking in the morning and taking inventory on his household,
"Bruddow go?"
"Your brother isn't up yet, honey."
"Tia go?"
"The dog is on her bed."
"Oh."
"Daaaddyyyy!!!" He runs at him and throws himself in for a hug.
He's pure unsolicited joy, that Ash Man.
He's joy even though he's had to deal with some kind of medical issue or emergency since the day he was born. Yeah, the day he was born. I'll never forget that either. How he drank and drank my overabundance of milk that comes way too quickly, then spit up and spit up and spit up until he aspirated and ended up in the NICU, tubes being forced in, screaming, me standing to the side, helpless and wishing I could breathe for him still.
It was as if he wanted to climb back in the womb and start over, since the very beginning. He was mad with colic, the kind that lasted nearly a year, and we just couldn't blame him. Every little and not-so-little thing just seemed extra difficult for him. Reflux, a digestive system that just didn't work right, a botched circumcision...you name it.
Everything that could go wrong, seemed to do exactly that.
So when I take Asher to appointments, I'm always a bit prepared for the not-so-good news. Yesterday this meant that I sat with an eye doctor while she tried to help me understand that his eyes don't work very well. She used a lot of big words that I couldn't focus on because my two boys were throwing raisins around the room and grabbing the doctor's um...chest. I took in what I could, wrote down the big words, and came home to call one of my closest friends who happens to be an eye doctor. She spoke English instead of Doctorese and I mostly understood.
In short, Asher needs glasses now so his right eye won't stop working completely. Basically, it's not really doing much, so the risk is that his brain will tell it to stop working. It needs exercise. He needs glasses (which will be the cutest thing I've ever seen in my whole life, I'm pretty sure.) He has some other issues with eyesight, including severe astigmatism and something else I don't really understand yet, to be honest.
And so we'll help. We'll get him his glasses. It could be so much worse. I'm so glad we know so early, just like we knew just early enough about his hydrocephalus, before any permanent damage was done with all that pressure on his brain.
I guess I'll probably never, as his mother, understand why he seems to always get the short end of the stick. It seems like it's just like that for some people, and sometimes it makes me angry and other times just sad. But the thing is, he's the happiest little person you'll ever meet, so mostly I just feel a peace under all the negative emotions that I'm supposed to feel.
Everything big and small that he goes through is shaping him to be the very best version of himself. He's always had an old soul look in his not-so-perfect eyes, andI gotta tell you, I'm looking forward to being a witness to how his wisdom and resilience will play out in his life.
He's absolutely perfect just as he is.
(As you can see, he sort of likes trying on glasses...we'll see how this goes.)
8/26/09
Opposites Attract
Wednesday~August 26th, 2009
Asher had a very long doctor's appointment today. We saw his regular pediatrician and talked at length about what to bring up at his appointment with his neurosurgeon in a couple of weeks.
We also talked about his eyesight and made an appointment for him to see a pediatric eye doctor in a couple of weeks. There's concern that he's having some vision issues due to the alignment of his eyes, and because he regularly mistakes one object for another. (And because hydrocephalus can cause some issues with eyesight.)
I for one think that Asher would be adorable in glasses...
After the appointment we headed home and while the boys napped, Ryan and I packed and got ready for he and the boys to take a trip up north together. Without me.
(Cue dramatic music.)
They woke up and my three boys piled in the van. I saw them off and then stood in the middle of the street crying like a baby.
(Cue even more dramatic music.)
When Ryan came up with the idea to go visit his Aunt with the boys and "give me a break," I hemmed and hawed and chewed my nails and bit my lip. He looked at me and shook his head, trying not to smile. "Yeah, I know," I said. "I can't help it. I can't decide if this is a good idea."
Then I brought it up on Twitter by saying that I was debating this opportunity for a break, and my wise and lovely friend Kelly came back with, "You must really need a break then."
Smarty pants. Yes, if I'm debating whether or not I can trust someone else-my husband- for a mere couple of days and have a breather...well yes, this means I really do need it. You know, to work on that healthy balance thing by actually experiencing it, spending a little time with just me.
Oh HI you, wanna hang out?
And yet there's still part of me that at this very moment is driving down the freeway in the opposite direction of where I actually am. And that my friends, is uncomfortable.
Ah, motherhood. You and your constant clashing opposite emotions. You exhaust me.
So tonight I think I'll go to bed early with a good book and wake up whenever I feel like it. Then tomorrow I'll actually finish some projects while I miss my boys. I'll spend the day waffling between fending off thoughts of terrible things happening while my boys are not on my watch, and being happy and relieved to have a break. I'll be grinning while I watch television and go to the bathroom all by myself and then I'll get all teary as I wonder what I'm missing with my family.
Yes, all the exhausting opposites. All the time.
This is why a mother never actually rests completely, even if she's resting.
And I would have it no other way.
Asher had a very long doctor's appointment today. We saw his regular pediatrician and talked at length about what to bring up at his appointment with his neurosurgeon in a couple of weeks.
We also talked about his eyesight and made an appointment for him to see a pediatric eye doctor in a couple of weeks. There's concern that he's having some vision issues due to the alignment of his eyes, and because he regularly mistakes one object for another. (And because hydrocephalus can cause some issues with eyesight.)
I for one think that Asher would be adorable in glasses...
After the appointment we headed home and while the boys napped, Ryan and I packed and got ready for he and the boys to take a trip up north together. Without me.
(Cue dramatic music.)
They woke up and my three boys piled in the van. I saw them off and then stood in the middle of the street crying like a baby.
(Cue even more dramatic music.)
When Ryan came up with the idea to go visit his Aunt with the boys and "give me a break," I hemmed and hawed and chewed my nails and bit my lip. He looked at me and shook his head, trying not to smile. "Yeah, I know," I said. "I can't help it. I can't decide if this is a good idea."
Then I brought it up on Twitter by saying that I was debating this opportunity for a break, and my wise and lovely friend Kelly came back with, "You must really need a break then."
Smarty pants. Yes, if I'm debating whether or not I can trust someone else-my husband- for a mere couple of days and have a breather...well yes, this means I really do need it. You know, to work on that healthy balance thing by actually experiencing it, spending a little time with just me.
Oh HI you, wanna hang out?
And yet there's still part of me that at this very moment is driving down the freeway in the opposite direction of where I actually am. And that my friends, is uncomfortable.
Ah, motherhood. You and your constant clashing opposite emotions. You exhaust me.
So tonight I think I'll go to bed early with a good book and wake up whenever I feel like it. Then tomorrow I'll actually finish some projects while I miss my boys. I'll spend the day waffling between fending off thoughts of terrible things happening while my boys are not on my watch, and being happy and relieved to have a break. I'll be grinning while I watch television and go to the bathroom all by myself and then I'll get all teary as I wonder what I'm missing with my family.
Yes, all the exhausting opposites. All the time.
This is why a mother never actually rests completely, even if she's resting.
And I would have it no other way.
8/21/09
Say What You Need To Say
Friday~August 21, 2009
We've been waiting for words. He's been waiting for words. He's still screaming and stomping, frustrated with our not reading his mind. We've been guessing and shrugging and apologizing for not knowing. We've been explaining his non-response to strangers with, "He's not quite into talking yet." We've been waiting with the doctor who said his words aren't enough, we'll see.
The words are still a bit stuck in his throat.
But he's finally trying. A little.
Scuuuse-E, he says as he tries to squeeze by.
Mmm-hummm, he agrees and UH EH, he protests.
And then just like that, he said two things that make the waiting the easiest thing I've ever done.
ASH...ER, he said as he pounded his chest and grinned. ASH...ER, spoken like two words,two perfectly clear little brilliant words.
Then later, as I carried him to bed, nuzzling my nose in his neck.
Honey, I love you, I said.
Wub oooh, he said back.
Asher talks now.
If you're here from David's Post of the Day, thank you so much for taking the time to stop by. If you'd like to stick around and read some previous "hits," you might enjoy Layers, or maybe even my latest post, The Witching Hours. Thank you again for taking the time to hang out here.
~~~~~~~~~~~~
If you're here from David's Post of the Day, thank you so much for taking the time to stop by. If you'd like to stick around and read some previous "hits," you might enjoy Layers, or maybe even my latest post, The Witching Hours. Thank you again for taking the time to hang out here.
8/18/09
The Stages
Tuesday~August 18, 2009
I have to admit something.
I don't really know very much about shunts.
This contraption is IN MY CHILD'S BRAIN, and I don't really know much about it at all.
I know that we have the very best pediatric neurosurgeon, and I know that he puts me at ease every time we see him. I know that the shunt is a valve, opening and closing depending on the amount of fluid in Asher's brain. And I know the shunt can malfunction for a number of reasons, but I don't really know what all of them are.
I've never googled "shunt malfunction."
I was too scared.
I've been pretending that ever since Asher had surgery, he's...well... fixed. Or at least a part of me is pretending that. Of course, when he vomits or seems exceptionally tired I think about a malfunction, but that doesn't happen very often.
For the most part, I try not to think about any of it at all.
I only know the basics, which I shared here. So when I sat across the table from a friend last week (one who knows full well what it's like to have a baby with medical issues) and she asked the very best questions, I couldn't answer most of them. I sat there feeling a bit silly for not knowing the answers. Of course, that wasn't her intention, it just happened and it got me thinking some ugly thoughts at first...
...What kind of mother doesn't know the answer to these questions? Why wouldn't I have educated myself as entirely as humanly possible? What's wrong with me?...
But on the way home and over dinner with another friend the next night (yes, I was very social last week), I realized that I've been going through my own personal "stages" this past year.
I figure every mother handles this sort of thing a different way. I've simply passed through some stages of denial and fear, and that's kept me from needing or wanting to know more. Whatever the reason for it, I know all of this not knowing has served a purpose for me. Maybe it has something to do with my sanity because if you don't know, I'm quite easily overwhelmed. I'm a strange dichotomy, all of this angst and peace at exactly the same time, all the time.
The thing is, I don't want to know that some malfunctions are life-threatening. I don't want to know that sometimes the malfunction won't even show up on a cat scan and that means it could get worse with no one knowing. I don't want to hear that having hydrocephalus is painful every day. I don't want to think about what's taken from Asher's quality of life because of this condition.
This is my boy. I want him to wake up in the morning without a headache. I want him to play sports without being scared that something will go terribly wrong. I want him to sit in class one day, thinking about what his teacher is saying and not about the pressure in his head.
I want him to have a brain that works the way that it's supposed to work, without help from a device.
But maybe that's not what I need. Wanting something that doesn't exist is definitely part of denial. I don't think I need that part of denial anymore.
Because part of sitting with this without thinking about it much, just letting it be, has allowed me to fall in love with Asher just exactly as he is without muddying the waters. He is not medical jargon to me. He's simply my Asher.
So I didn't want to know and maybe I still don't. Yeah, maybe there's a part of me that will always hold hands with denial, and I think that's okay. But now, since I'm ready, my other hand is starting to reach out toward acceptance, and it's good.
I have to admit something.
I don't really know very much about shunts.
This contraption is IN MY CHILD'S BRAIN, and I don't really know much about it at all.
I know that we have the very best pediatric neurosurgeon, and I know that he puts me at ease every time we see him. I know that the shunt is a valve, opening and closing depending on the amount of fluid in Asher's brain. And I know the shunt can malfunction for a number of reasons, but I don't really know what all of them are.
I've never googled "shunt malfunction."
I was too scared.
I've been pretending that ever since Asher had surgery, he's...well... fixed. Or at least a part of me is pretending that. Of course, when he vomits or seems exceptionally tired I think about a malfunction, but that doesn't happen very often.
For the most part, I try not to think about any of it at all.
I only know the basics, which I shared here. So when I sat across the table from a friend last week (one who knows full well what it's like to have a baby with medical issues) and she asked the very best questions, I couldn't answer most of them. I sat there feeling a bit silly for not knowing the answers. Of course, that wasn't her intention, it just happened and it got me thinking some ugly thoughts at first...
...What kind of mother doesn't know the answer to these questions? Why wouldn't I have educated myself as entirely as humanly possible? What's wrong with me?...
But on the way home and over dinner with another friend the next night (yes, I was very social last week), I realized that I've been going through my own personal "stages" this past year.
I figure every mother handles this sort of thing a different way. I've simply passed through some stages of denial and fear, and that's kept me from needing or wanting to know more. Whatever the reason for it, I know all of this not knowing has served a purpose for me. Maybe it has something to do with my sanity because if you don't know, I'm quite easily overwhelmed. I'm a strange dichotomy, all of this angst and peace at exactly the same time, all the time.
The thing is, I don't want to know that some malfunctions are life-threatening. I don't want to know that sometimes the malfunction won't even show up on a cat scan and that means it could get worse with no one knowing. I don't want to hear that having hydrocephalus is painful every day. I don't want to think about what's taken from Asher's quality of life because of this condition.
This is my boy. I want him to wake up in the morning without a headache. I want him to play sports without being scared that something will go terribly wrong. I want him to sit in class one day, thinking about what his teacher is saying and not about the pressure in his head.
I want him to have a brain that works the way that it's supposed to work, without help from a device.
But maybe that's not what I need. Wanting something that doesn't exist is definitely part of denial. I don't think I need that part of denial anymore.
Because part of sitting with this without thinking about it much, just letting it be, has allowed me to fall in love with Asher just exactly as he is without muddying the waters. He is not medical jargon to me. He's simply my Asher.
So I didn't want to know and maybe I still don't. Yeah, maybe there's a part of me that will always hold hands with denial, and I think that's okay. But now, since I'm ready, my other hand is starting to reach out toward acceptance, and it's good.
8/12/09
I want to fix you
Wednesday~August 12, 2009
Most of what I remember from when my boys were babies is a blur with flashes of emotion. I hate forgetting even the things that I try so hard to relish. Some of the things I do remember, I should probably forget, but then again, I don't want to forget the things that hold us tight together for the enduring of them.
With Miles I remember one particular day with crystal clarity. We were taking a nap when I woke up to strange gurgling and choking sounds. He was vomiting in his sleep, eyes slowly pulling themselves open, a look of nothing on his face. I sat up and turned him on his side and more and more the gasping and choking came, covering ourselves and the bed in wet. I picked him up and it just kept happening. I walked to the neighbor's, asking if I was being a paranoid mother or oh my, it won't stop what should I do?
This mother of four said call the doctor, this is just not normal. Look, it doesn't stop. Heather, GO!
And then I called and she said go to the hospital right now get in the car and go because she's a nurse and she could hear his not stopping over the phone.
On the way there, Ryan looked both ways and ran red lights while our baby grew listless, throwing up green bile and smiling at me when I rubbed his cheeks awake through my tears.
I wanted to fix him.
I'll always want both of them to come home so I can try to fix them.
We still don't know why it happened, but it did. He was happy, flushed and giggling within hours, cleaned of whatever it was that ailed him. We were relieved and stunned at the same time.
So much of motherhood is an effort to right the wrongs done to them.
I explain and I console and I try to lift. I'm straining against it, this reality of life.
Our reality includes fearing for Asher much of the time. We watch him more closely, more focused on his health. Which doesn't match up with the way that we now focus on Miles, the healthy one. It's not fair.
Today Asher suddenly threw up, standing there next to me with a splat that hit the kitchen floor. For a second I was brought back in time, when he was a baby, and spit up was to me and him as water is to a fish.
But then it hit me. His shunt. I thought oh wait that could mean something other than the flu there could be a malfunction this isn't good I hate it when I don't know what to do maybe it's just the flu...
Oh yeah, I'll watch and I'll wait and I'll do it closely. I'll call Ryan and then we'll watch and if something seems strange we'll just get in the car, we'll just GO and we'll run red lights if we have to...
I want to fix him.
A few days ago, Miles watched a YouTube video of the Coldplay song "Fix You." He watched it twice, glued to the screen, taking in the music and the words. I stood behind him and cried. I thought about how very little energy there is to focus on fixing him these days. It's been that way for a long time. It's not fair. I say don't bump his head, be careful, don't hurt your brother...
It is yet another thing that reminds me of how very small I am, and how very much faith this life takes. There are times when we have nothing left to do but hope and then hope in the face of odds.
I hope Asher has a flu bug.
I hope Miles knows how exceptionally valuable he really is.
Most of what I remember from when my boys were babies is a blur with flashes of emotion. I hate forgetting even the things that I try so hard to relish. Some of the things I do remember, I should probably forget, but then again, I don't want to forget the things that hold us tight together for the enduring of them.
With Miles I remember one particular day with crystal clarity. We were taking a nap when I woke up to strange gurgling and choking sounds. He was vomiting in his sleep, eyes slowly pulling themselves open, a look of nothing on his face. I sat up and turned him on his side and more and more the gasping and choking came, covering ourselves and the bed in wet. I picked him up and it just kept happening. I walked to the neighbor's, asking if I was being a paranoid mother or oh my, it won't stop what should I do?
This mother of four said call the doctor, this is just not normal. Look, it doesn't stop. Heather, GO!
And then I called and she said go to the hospital right now get in the car and go because she's a nurse and she could hear his not stopping over the phone.
On the way there, Ryan looked both ways and ran red lights while our baby grew listless, throwing up green bile and smiling at me when I rubbed his cheeks awake through my tears.
I wanted to fix him.
I'll always want both of them to come home so I can try to fix them.
We still don't know why it happened, but it did. He was happy, flushed and giggling within hours, cleaned of whatever it was that ailed him. We were relieved and stunned at the same time.
So much of motherhood is an effort to right the wrongs done to them.
I explain and I console and I try to lift. I'm straining against it, this reality of life.
Our reality includes fearing for Asher much of the time. We watch him more closely, more focused on his health. Which doesn't match up with the way that we now focus on Miles, the healthy one. It's not fair.
Today Asher suddenly threw up, standing there next to me with a splat that hit the kitchen floor. For a second I was brought back in time, when he was a baby, and spit up was to me and him as water is to a fish.
But then it hit me. His shunt. I thought oh wait that could mean something other than the flu there could be a malfunction this isn't good I hate it when I don't know what to do maybe it's just the flu...
Oh yeah, I'll watch and I'll wait and I'll do it closely. I'll call Ryan and then we'll watch and if something seems strange we'll just get in the car, we'll just GO and we'll run red lights if we have to...
I want to fix him.
A few days ago, Miles watched a YouTube video of the Coldplay song "Fix You." He watched it twice, glued to the screen, taking in the music and the words. I stood behind him and cried. I thought about how very little energy there is to focus on fixing him these days. It's been that way for a long time. It's not fair. I say don't bump his head, be careful, don't hurt your brother...
It is yet another thing that reminds me of how very small I am, and how very much faith this life takes. There are times when we have nothing left to do but hope and then hope in the face of odds.
I hope Asher has a flu bug.
I hope Miles knows how exceptionally valuable he really is.
Update: Asher seems to be doing fine. He slept well and hasn't gotten sick again. I'm guessing it was just a fluke. Thankfully.
Because of the comments, I wanted to add: I do understand that all mothers go through something similar to this, even if they don't have a child with special needs. Life does ebb and flow and there are adjustments that sometimes take something from one child or another. I do realize that's something kids need to learn. Life isn't fair. At the same time, it's difficult for me to relay the difference between that, the inevitable challenges of life, and having a child with health concerns and how that impacts the family. It's too difficult to even attempt to explain, so today I won't try. I just wanted to say that I do recognize there's no way I can control life and keep it fair for my kids, and I don't actually want to. I just hurt when they hurt, like any other mother.
Because of the comments, I wanted to add: I do understand that all mothers go through something similar to this, even if they don't have a child with special needs. Life does ebb and flow and there are adjustments that sometimes take something from one child or another. I do realize that's something kids need to learn. Life isn't fair. At the same time, it's difficult for me to relay the difference between that, the inevitable challenges of life, and having a child with health concerns and how that impacts the family. It's too difficult to even attempt to explain, so today I won't try. I just wanted to say that I do recognize there's no way I can control life and keep it fair for my kids, and I don't actually want to. I just hurt when they hurt, like any other mother.
7/16/09
Two looks good on you
Thursday~July 16th, 2009
But you know what? You're just so happy and strong, you don't seem to mind a bit. The doctors and nurses love seeing you. They say there's just something special about your happiness. They can't believe how calm and peaceful you seem. They poke and prod and you quietly sit with me. They push on your shunt and feel all around your head and you kick your feet and snuggle me.
You're such a busy little guy, always climbing and exploring. (Hence, the possible broken nose.) You love gum, being outside, mud, music, Wall-E, and most of all, people. You grin and hop and run to visitors. You are joyful, kind, and so good to have around.
Well, aside from that whole broken nose thing.
Happy Birthday, my sweet boy. I love you.
(If you'd like to learn more about Asher's condition, hydrocephalus, you can click on The Noggin under Browse by Category in the sidebar.)
Yesterday we made another trip to the doctor. Boy, you've spent a lot of the last two years in that place. This time, we were checking for a broken nose. You fall so much, child. I'm pretty sure the doctor is starting to wonder about us. So you'll have an x-ray on Monday because it's likely there's a fracture in there. You poor thing. For your birthday? A broken nose?
But you know what? You're just so happy and strong, you don't seem to mind a bit. The doctors and nurses love seeing you. They say there's just something special about your happiness. They can't believe how calm and peaceful you seem. They poke and prod and you quietly sit with me. They push on your shunt and feel all around your head and you kick your feet and snuggle me.
You're such a busy little guy, always climbing and exploring. (Hence, the possible broken nose.) You love gum, being outside, mud, music, Wall-E, and most of all, people. You grin and hop and run to visitors. You are joyful, kind, and so good to have around.
You were born around this time two years ago today. I type that with a lump in my throat that I can't fight because I love you, and I'm so glad we got to keep you. Asher, your life has not been a bowl of cherries. And yet, in many ways you seem undaunted. I think you're probably wiser than I will ever be. From the start, things have just been hard for you. We've felt helpless and scared, and we've wanted health and life free of pain for you. That's not possible, I suppose. But I'm more thankful than words can say today, on your 2nd birthday, that you've finally hit your longest stride of smooth sailing.
Well, aside from that whole broken nose thing.
Happy Birthday, my sweet boy. I love you.
(If you'd like to learn more about Asher's condition, hydrocephalus, you can click on The Noggin under Browse by Category in the sidebar.)
7/1/09
The Noggin toots his own horn (and a giveaway winner!)
Wednesday~July 1st, 2009
Asher is especially fond of a toy trumpet we found at a garage sale. (Yes, I bought a second-hand toy a child puts his or her mouth on and then blows saliva into. Sure, it probably has many foreign germs embedded inside of it, but I bought it anyway, just because Asher liked it so much. Ahem.) Anyway, my favorite parts of the video are when he plays the trumpet through his nose (brilliant), and then studies where to put his fingers very closely (brilliant), and then lastly, how he blows and blows and blows and then answers, "Uh huh!" when asked if he's dizzy. (which is hard to hear, but it's at the very end-the part where he looks a little drunk from all that light-headed tootin' of the horn.)
I can't even really describe what it's like for me to watch Asher enjoy life, his little personality blossoming in ways it just couldn't before. His pain and discomfort were stealing his ability to just have fun before his surgery and recovery. Now look at 'em! Oh how I love this boy...Enjoy!
Asher is especially fond of a toy trumpet we found at a garage sale. (Yes, I bought a second-hand toy a child puts his or her mouth on and then blows saliva into. Sure, it probably has many foreign germs embedded inside of it, but I bought it anyway, just because Asher liked it so much. Ahem.) Anyway, my favorite parts of the video are when he plays the trumpet through his nose (brilliant), and then studies where to put his fingers very closely (brilliant), and then lastly, how he blows and blows and blows and then answers, "Uh huh!" when asked if he's dizzy. (which is hard to hear, but it's at the very end-the part where he looks a little drunk from all that light-headed tootin' of the horn.)
I can't even really describe what it's like for me to watch Asher enjoy life, his little personality blossoming in ways it just couldn't before. His pain and discomfort were stealing his ability to just have fun before his surgery and recovery. Now look at 'em! Oh how I love this boy...Enjoy!
(He rocks.)
Rachel, shoot me your address and I'll mail off your prize!
Josiah won the bottle! :)
Peace out.
And now for the Crocodile Creek water bottle giveaway winner
chosen by random.org
chosen by random.org
RACHEL of IN HIS HANDS!!!
Rachel, shoot me your address and I'll mail off your prize!
Josiah won the bottle! :)
Peace out.
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