What an eventful few days. Friday morning Max slept in pretty late for him. It was almost 11:00 and I finally came into his room to see if he was feeling okay. And found that he was just tired...again...staying up all night will do that to a kid! He only slept from about 9:00am till 11:00am Friday. He was up all night on the hour otherwise.
Once I got him up and in his chair and his medicine in him, he started vomiting. He was still happy and not fussing, just got congested and threw up. Not such a big deal, more of an annoyance that I had to remake his medicine. As I was remaking his medicine, he had a little seizure. BOOOO for seizures! He then got on a roll, and had another 10 within an hour. I called his neurologist on #11. He told us to get out the big guns. Diastat is the drug of choice around here, and we got it in him as soon as I got off the phone. Within minutes he was smooth out!
The seizures stopped, and he slept for another 2 hours. We averted a hospital stay for the first time with breakthrough seizures because of the g-tube. Usually we would have had to go in because after being knocked out, he wouldn't eat, which can cause his metabolic status to go haywire. Instead, we propped him up and fed him while he slept off the meds. Dr. L. had us checking in every hour for the rest of the afternoon, and increased his dose of medicine when it was all said and done.
Saturday he was still a little groggy from the seizures and the medicine, so we took it pretty easy. In the evening, we were planning to get out while Ang and Dan watched Max for us. Max was fussy and wanting to lay in his bed for a bit, so Steve picked him up and took him in there. When he came back he looked a little sick with pain. I asked what was wrong and he said he had hurt his shoulder when picking up Max. He took some aleve and we went ahead out. But by this morning, he was really hurting.
And aside here...Max slept THROUGH THE NIGHT Saturday night!!! He went to sleep at around 11:30, and slept until 5:30. Then got him comfortable to sleep until 9:30! YES!!!
So, back to the story...Steve called the doctor on call and they told him it sounded like a dislocated shoulder, and to go on to the ER to have it looked at so he didn't do any more damage. So off we went, after leaving Max with my sister. We were there 4 hours...saw a nurse for 2 minutes, then x-ray for 5 minutes, then a doctor for maybe 5 minutes total. All to say it was pulled muscles, here's a sling, don't move it for 2 weeks!
So the long and short of it is, we will be using our new lift a lot more...and looking into other ways to move Max around without hurting ourselves. It is really going to take some training!
It's a full week ahead, so I think I'll wrap it up now. Mom and Abbey are coming this weekend...and lots of medical calls and ordering and scheduling going on before they come!
Sunday, August 30, 2009
Thursday, August 27, 2009
Baby monkey...
When we were going through pictures last night, for Abbey's post, we came upon this gem...
It brought tears to my eyes...and makes me smile. What a little baby! It was taken in May, 2004.
It brought tears to my eyes...and makes me smile. What a little baby! It was taken in May, 2004.
Wednesday, August 26, 2009
Happy Birthday Fred!!!
Once upon a time...she was so tiny...
1998...
but she grew...
and with each year became more beautiful...and more grown up...
1999 at Grammy's house in Houston...
March, 2000
July, 2001
November, 2002
November, 2003
July, 2004
October, 2005
November, 2006
July, 2007
June, 2008
June, 2009
Happy Birthday to our one and only, Abigail. 11 years old today!!
1998...
but she grew...
and with each year became more beautiful...and more grown up...
1999 at Grammy's house in Houston...
March, 2000
July, 2001
November, 2002
November, 2003
July, 2004
October, 2005
November, 2006
July, 2007
June, 2008
June, 2009
Happy Birthday to our one and only, Abigail. 11 years old today!!
Tuesday, August 25, 2009
Where everybody knows your name...Mom.
Max had a "routine" MRI and Pet Scan today at The Children's Hospital. Routine for Max, anyway. His neurologist wants to check and see if there are any significant changes to his brain, since his last EEG was different from so many previous ones. He's getting older, and growing, and developing. So naturally - his brain will change, and it's good to have pictures along the way.
We had to get up at crazy o'clock this morning to get ready and get down there by 7:45am for check in. We got in and back to our room, and they went right in to start his IV. Max is a notorious "hard stick". His veins roll around, so as soon as they find one and stick the needle in, it moves and they've lost that opportunity. This morning was no different, and it took 3 nurses to finally get a good on in the side of his foot.
After he was hooked up with the IV, the EEG tech put an EEG on to monitor his brain before and while they injected him with the radioactive isotope that made the picture light up for them to see the parts of the brain that were overactive.
They wheeled him back and got ready to inject him with the propofol, or general anesthesia to make sure he slept and held still for the duration of the tests. He was a Fussy Gus, but it took literally seconds for the medicine to work and he was OUT! We gathered our things and were taken to the waiting room to...wait.
While we were waiting, I got to thinking about being there. This hospital that we rely on so much for the care of our son. This hospital that has saved his life. This hospital that has become a comfort zone. This hospital where we "belong". That last one struck me as strange.
Belonging to a hospital? Feeling comfort there? Those aren't traits one usually thinks of in a place where sick children are. But for us, Children's is a place where we don't feel abnormal. Where the people we encounter actually look at our son, and talk to him, and treat him...and us...like we're normal. Maybe because they've seen it all. Maybe because they love their jobs and love to take care of children. Maybe they pump the happy gas through the halls.
When the tech came out to get Max, she introduced herself first to him, "Hi Mr. Magoo...I'm Becky! Hi Mom and Dad..let's go back and get him started.". We're always called 'Mom and Dad' from the occasional staff members/nurses/doctors we encounter. Except for by his regular doctors...they know us by name...and insist we call them by theirs. It's like we're a big group of friends working together to make him "all better"...whatever that may mean that day.
I never leave there feeling less than, or not the same as anyone else. There is never pity in the voices of the nurses or doctors. They know we don't need it, nor do we want it. There is never discouragement from trying what we think might help him. They know we know our son better than they could. There never ignore the fact that Max is a kid like any other that comes through there, and deserves the respect and admiration any other child would. It's one of the only places we go that I feel like he is truly paid attention to, and valued for who he is, no matter what his capacities in life are. And I so appreciate that.
When they were finished with both the tests, the nurse came out to the waiting room to get us. We went to the room he was in and saw a very sound asleep little guy. Oh if I could just bottle that up and take it home! I bent down to give him a kiss and he stirred awake. In usual post-anesthesia fashion, he threw quite a fit. Kicking and yelling and crying and then falling back into his drug induced sleep. It's always a funny sight to me.
They gave us our discharge papers, and instructions on what to look for throughout the day and night, as a cause for concern. Mostly a blah blah blah...you know what to look for...call us or 911 if you have to.
Then they sent us on our way with a "good bye, have a good day"...and a "Bye Bye Max, I hope you have a good rest in the car buddy!".
We got Max home and in his chair for eating and more sleeping. He's been a little nauseous today, and a little pale. Which was to be expected after the anesthesia. We should know in a couple of days if anything was unusual or alarming on the tests. Like I said in the beginning, just routine, so not expecting much in way of feedback. It's mostly just data.
I guess what this whole post is about, in it's own rambling way, is to say it's so good to have a place like Children's to take care of Max and us when we need them. And even better to not have to stay!
We had to get up at crazy o'clock this morning to get ready and get down there by 7:45am for check in. We got in and back to our room, and they went right in to start his IV. Max is a notorious "hard stick". His veins roll around, so as soon as they find one and stick the needle in, it moves and they've lost that opportunity. This morning was no different, and it took 3 nurses to finally get a good on in the side of his foot.
After he was hooked up with the IV, the EEG tech put an EEG on to monitor his brain before and while they injected him with the radioactive isotope that made the picture light up for them to see the parts of the brain that were overactive.
They wheeled him back and got ready to inject him with the propofol, or general anesthesia to make sure he slept and held still for the duration of the tests. He was a Fussy Gus, but it took literally seconds for the medicine to work and he was OUT! We gathered our things and were taken to the waiting room to...wait.
While we were waiting, I got to thinking about being there. This hospital that we rely on so much for the care of our son. This hospital that has saved his life. This hospital that has become a comfort zone. This hospital where we "belong". That last one struck me as strange.
Belonging to a hospital? Feeling comfort there? Those aren't traits one usually thinks of in a place where sick children are. But for us, Children's is a place where we don't feel abnormal. Where the people we encounter actually look at our son, and talk to him, and treat him...and us...like we're normal. Maybe because they've seen it all. Maybe because they love their jobs and love to take care of children. Maybe they pump the happy gas through the halls.
When the tech came out to get Max, she introduced herself first to him, "Hi Mr. Magoo...I'm Becky! Hi Mom and Dad..let's go back and get him started.". We're always called 'Mom and Dad' from the occasional staff members/nurses/doctors we encounter. Except for by his regular doctors...they know us by name...and insist we call them by theirs. It's like we're a big group of friends working together to make him "all better"...whatever that may mean that day.
I never leave there feeling less than, or not the same as anyone else. There is never pity in the voices of the nurses or doctors. They know we don't need it, nor do we want it. There is never discouragement from trying what we think might help him. They know we know our son better than they could. There never ignore the fact that Max is a kid like any other that comes through there, and deserves the respect and admiration any other child would. It's one of the only places we go that I feel like he is truly paid attention to, and valued for who he is, no matter what his capacities in life are. And I so appreciate that.
When they were finished with both the tests, the nurse came out to the waiting room to get us. We went to the room he was in and saw a very sound asleep little guy. Oh if I could just bottle that up and take it home! I bent down to give him a kiss and he stirred awake. In usual post-anesthesia fashion, he threw quite a fit. Kicking and yelling and crying and then falling back into his drug induced sleep. It's always a funny sight to me.
They gave us our discharge papers, and instructions on what to look for throughout the day and night, as a cause for concern. Mostly a blah blah blah...you know what to look for...call us or 911 if you have to.
Then they sent us on our way with a "good bye, have a good day"...and a "Bye Bye Max, I hope you have a good rest in the car buddy!".
We got Max home and in his chair for eating and more sleeping. He's been a little nauseous today, and a little pale. Which was to be expected after the anesthesia. We should know in a couple of days if anything was unusual or alarming on the tests. Like I said in the beginning, just routine, so not expecting much in way of feedback. It's mostly just data.
I guess what this whole post is about, in it's own rambling way, is to say it's so good to have a place like Children's to take care of Max and us when we need them. And even better to not have to stay!
Saturday, August 22, 2009
I'm a little airplane..nnnyyeeeeeooooww...
We went to the Colorado Sport International Air Show & Rocky Mountain Regional Fly-In today. Yesterday afternoon, we heard a whole lot of rumbling in the sky, and when Steve went out to see what it was, he saw an F-16 flying straight up in the air, then zooming back down.
I looked up the details, and we decided to make a day of it. It was at the small airport by our house...and it was hot as blazes! I brought 6 ice packs for Max. He does not do well in the heat at all...but I knew he would love the sound of the planes.
We got there and set up our little beach tent and got Max surrounded by his ice packs. He still sweat like crazy, even with all the ice packs and cold wash cloths. But he did indeed like the sound of the planes! And his daddy did too!
Here are a few of my favorite pics from today...you can click on any of them to see them all over on flickr.
Here's one hot momma with her hot little guy! Come on cooler weather!
I looked up the details, and we decided to make a day of it. It was at the small airport by our house...and it was hot as blazes! I brought 6 ice packs for Max. He does not do well in the heat at all...but I knew he would love the sound of the planes.
We got there and set up our little beach tent and got Max surrounded by his ice packs. He still sweat like crazy, even with all the ice packs and cold wash cloths. But he did indeed like the sound of the planes! And his daddy did too!
Here are a few of my favorite pics from today...you can click on any of them to see them all over on flickr.
Here's one hot momma with her hot little guy! Come on cooler weather!
Thursday, August 20, 2009
Love/Hate...
I love this time of night. It is currently 10:42 on my clock. The house is so quiet. I can hear the fan running in Max's room, and my keys hitting as I type. And that's it. It's too cold to be outside of the covers, so I'm snuggled up in bed in the pitch dark, all except for the glow of my computer screen.
It's a beautiful time to just unwind...and start to lay down all of the things I need pick back up in the morning. It is a time for me....until...
It is now 10:44 on my clock. I hear Max crying in his room. I know he is fighting the urge to stay asleep, because he was, just two minutes ago asleep. So I wait and listen for a few minutes to see if he stops, or if I must go in there to try to get him back into sleep.
10:45, all quiet again. 10:46...screaming. 10:47...checking in. 10:48...rolled him over and back in my bed.
This is my night. Waiting through these first couple of hours to try to unwind, listen for him, check on him, come back to bed, try to go to sleep, one ear open...one eye open.
I hate nights. I hate to sleep. Because in almost 6 years I haven't slept a comfortable sleep once.
We play this game all night. When we finally wake in the morning, it's like gathering around the water-cooler exchanging wild stories from the night before.
"How many times were you up?"
"I think I finally fell asleep halfway on his bed and halfway on the floor."
"When did you get to sleep...when did you wake up?"
We are living like zombie parents of a newborn...only almost 6 years on. Those first 6 months to a year of a baby are so tiring...they're up all the time. But for most babies, they outgrow it. They get into a routine, and go to bed and stay asleep all night. But as we were reminded earlier this week, Max may never outgrow his inability to sleep well.
We were talking with his neurologist on Monday, and he reminded us, as only he can, that Max's brain is not normal. Very matter of fact, not at all patronizing. Just a reminder...that indeed...Max's brain does not work like a typical kid's. The area that tells him to sleep is malformed. And because of this, he will likely always have sleep issues.
Which means...I will too. I wish I could sleep through the crying. But I can't. Until I am so exhausted I literally can't get out of bed. But that's maybe one night a month. And Steve and I exchange those nights. Tonight he's not feeling great, so I'll be taking the full shift.
And no, that does not mean I will get to nap, or take the day off tomorrow. Because my boy will be happy to stay awake all day too.
I've talked with all of his doctors about his lack of heavy sleep. Because he does sleep...he gets to sleep and then wakes up in a terrible scream. Until he's comforted back to sleep. And that's the dance we do all night. His neurologist does not believe it is seizures, so no increased medication is needed. We've currently been given the okay to give him a higher dose of melatonin a night, and to try that for a month, and then we'll check back in to see if there is something else to try without drugging him.
11:05...I'm tired. Ready to fall into a deep heavy wonderful sleep. I do love this time of night. And maybe in another life-time I'll get to enjoy the restoring act of sleep again.
It's a beautiful time to just unwind...and start to lay down all of the things I need pick back up in the morning. It is a time for me....until...
It is now 10:44 on my clock. I hear Max crying in his room. I know he is fighting the urge to stay asleep, because he was, just two minutes ago asleep. So I wait and listen for a few minutes to see if he stops, or if I must go in there to try to get him back into sleep.
10:45, all quiet again. 10:46...screaming. 10:47...checking in. 10:48...rolled him over and back in my bed.
This is my night. Waiting through these first couple of hours to try to unwind, listen for him, check on him, come back to bed, try to go to sleep, one ear open...one eye open.
I hate nights. I hate to sleep. Because in almost 6 years I haven't slept a comfortable sleep once.
We play this game all night. When we finally wake in the morning, it's like gathering around the water-cooler exchanging wild stories from the night before.
"How many times were you up?"
"I think I finally fell asleep halfway on his bed and halfway on the floor."
"When did you get to sleep...when did you wake up?"
We are living like zombie parents of a newborn...only almost 6 years on. Those first 6 months to a year of a baby are so tiring...they're up all the time. But for most babies, they outgrow it. They get into a routine, and go to bed and stay asleep all night. But as we were reminded earlier this week, Max may never outgrow his inability to sleep well.
We were talking with his neurologist on Monday, and he reminded us, as only he can, that Max's brain is not normal. Very matter of fact, not at all patronizing. Just a reminder...that indeed...Max's brain does not work like a typical kid's. The area that tells him to sleep is malformed. And because of this, he will likely always have sleep issues.
Which means...I will too. I wish I could sleep through the crying. But I can't. Until I am so exhausted I literally can't get out of bed. But that's maybe one night a month. And Steve and I exchange those nights. Tonight he's not feeling great, so I'll be taking the full shift.
And no, that does not mean I will get to nap, or take the day off tomorrow. Because my boy will be happy to stay awake all day too.
I've talked with all of his doctors about his lack of heavy sleep. Because he does sleep...he gets to sleep and then wakes up in a terrible scream. Until he's comforted back to sleep. And that's the dance we do all night. His neurologist does not believe it is seizures, so no increased medication is needed. We've currently been given the okay to give him a higher dose of melatonin a night, and to try that for a month, and then we'll check back in to see if there is something else to try without drugging him.
11:05...I'm tired. Ready to fall into a deep heavy wonderful sleep. I do love this time of night. And maybe in another life-time I'll get to enjoy the restoring act of sleep again.
Wednesday, August 19, 2009
Happy Happy Birthday...
Angelina Bangelina...my first baby sister! Happy Happy Birthday today!!!
(One of my favorite pictures of her on the top of Mt. Evans in Colorado)
(One of my favorite pictures of her on the top of Mt. Evans in Colorado)
Sunday, August 16, 2009
Reform this...
While so many are getting worked up about healthcare reform, I have found myself strangely taking a back-seat to all the hubbub. And tonight, I think I was able to put my finger on why that is.
Dealing with health care is my every day life. I don't have time to change the system (that absolutely stinks by the way)...I am too busy fighting with it day in and day out.
Right now, on my list are the following:
Called yesterday to re-order Max's formula and enteral supplies so we get them before we run out next Tuesday, yes, exactly on Tuesday. They should all arrive Monday.
Still trying to get Max's talker approved. It was ordered last November. The company that was giving us such a hard time with it decided to go ahead and sell to a much bigger company and just drop us into the lap of the new company. Monday morning I am calling to speak with our new representative there and ask where we are in the process. Last I heard, we are going to have to start all over again. Insurance issued a check back in March for their portion of the talker, $4,900. There is a remaining $5,000 that needs to be paid by Medicaid before we will get it.
Talked all last week to our DME guy about Max's stander, ordered in May. It's been denied twice by Medicaid. They don't see why we don't choose a cheaper one. They are appealing again. I've contacted the company who makes the stander to see if they can help, and they will have their funding team look at the letter of medical necessity.
We've been looking at and trying our hardest to figure out just how exactly are we going to be able to afford a vehicle that will work for Max. It is getting extremely difficult for us to lift him into his car seat. At best, we can find a van that would JUST fit us and Max for around $50,000. That wouldn't include extra space for diaper changes, or other passengers. To get those things, we're looking at around $100,000. None of which would be covered by insurance or medicaid.
Max is outgrowing him "kick-around" wheelchair. He has a more structured chair, but doesn't tolerate it much. So we have his jogging wheelchair...which he's up to the top and hanging off the end. With all the other equipment trying to go through Medicaid right now, and the fact that we got the brand new chair that he won't sit in at the beginning of the year, Medicaid won't pay for a new one. I will be contacting a local non-profit to see what they have in the way of chairs that might fit him. Then I will fill out their 20 page application forms to see if we will be approved or denied.
I got the paperwork in the mail today to re-evaluate his status for Medicaid. Yearly they look over everything and determine if he still "needs" assistance. I have to look through all the paperwork and sign it and get it back in within a week so we don't lose the Madicaid waiver.
I have to look for a new OT, since his current one will not be working for the agency that sends her out after Sept. 10th. She was great with Max, and he worked hard with her. But I will need to find someone who is not a contract worker, as I am not in the mood to get used to someone, and Max get used to them only to have them leave in 6 month's time.
Monday will be another phone call to Neurology to check up on Max's lack of sleep. We will likely be coming in for EEG, Video EEG, or an overnight stay for full observation. This could likely mean more medicine (which we pay for out of pocket from a pharmacy in Canada, because it is STILL not FDA approved). Or a whole new medicine that we will have to learn.
I will be contacting our PT about a new therapy suit that will help with Max's body tone. I'm not holding my breath that it would at all be approved, since it hasn't even been a year since we got his last suit...which he has of course outgrown. Seriously...KIDS GROW!!!!!! That's the whole point of all of this therapy and treating for life!
I will be calling the pharmacy to check on a medicine he takes for him metabolic disease to see when exactly it will be in stock. Since Max is the only patient in the entire Walgreen's database that takes it, they have to order from the manufacturer. Which is perfect, since we are completely OUT!
You see, these are just the things at the top of my mind at 12:30 on a Sunday morning. Things that keep me up. My list of health care issues that are faced on a daily and weekly basis around here.
So at the end of my day...the fighters for their side of health care reform, can have their fights. They can yell and picket at the townhall meetings...they can agree completely with a totally new system. Because there are people in this country that just like to argue.
And I will fall back exhausted, without an ounce of fight in me over things that the majority of the public doesn't even understand. Just wishing that some of those people so heated about it all would make it so even one of the things on my list was easier at the end of the day.
Dealing with health care is my every day life. I don't have time to change the system (that absolutely stinks by the way)...I am too busy fighting with it day in and day out.
Right now, on my list are the following:
Called yesterday to re-order Max's formula and enteral supplies so we get them before we run out next Tuesday, yes, exactly on Tuesday. They should all arrive Monday.
Still trying to get Max's talker approved. It was ordered last November. The company that was giving us such a hard time with it decided to go ahead and sell to a much bigger company and just drop us into the lap of the new company. Monday morning I am calling to speak with our new representative there and ask where we are in the process. Last I heard, we are going to have to start all over again. Insurance issued a check back in March for their portion of the talker, $4,900. There is a remaining $5,000 that needs to be paid by Medicaid before we will get it.
Talked all last week to our DME guy about Max's stander, ordered in May. It's been denied twice by Medicaid. They don't see why we don't choose a cheaper one. They are appealing again. I've contacted the company who makes the stander to see if they can help, and they will have their funding team look at the letter of medical necessity.
We've been looking at and trying our hardest to figure out just how exactly are we going to be able to afford a vehicle that will work for Max. It is getting extremely difficult for us to lift him into his car seat. At best, we can find a van that would JUST fit us and Max for around $50,000. That wouldn't include extra space for diaper changes, or other passengers. To get those things, we're looking at around $100,000. None of which would be covered by insurance or medicaid.
Max is outgrowing him "kick-around" wheelchair. He has a more structured chair, but doesn't tolerate it much. So we have his jogging wheelchair...which he's up to the top and hanging off the end. With all the other equipment trying to go through Medicaid right now, and the fact that we got the brand new chair that he won't sit in at the beginning of the year, Medicaid won't pay for a new one. I will be contacting a local non-profit to see what they have in the way of chairs that might fit him. Then I will fill out their 20 page application forms to see if we will be approved or denied.
I got the paperwork in the mail today to re-evaluate his status for Medicaid. Yearly they look over everything and determine if he still "needs" assistance. I have to look through all the paperwork and sign it and get it back in within a week so we don't lose the Madicaid waiver.
I have to look for a new OT, since his current one will not be working for the agency that sends her out after Sept. 10th. She was great with Max, and he worked hard with her. But I will need to find someone who is not a contract worker, as I am not in the mood to get used to someone, and Max get used to them only to have them leave in 6 month's time.
Monday will be another phone call to Neurology to check up on Max's lack of sleep. We will likely be coming in for EEG, Video EEG, or an overnight stay for full observation. This could likely mean more medicine (which we pay for out of pocket from a pharmacy in Canada, because it is STILL not FDA approved). Or a whole new medicine that we will have to learn.
I will be contacting our PT about a new therapy suit that will help with Max's body tone. I'm not holding my breath that it would at all be approved, since it hasn't even been a year since we got his last suit...which he has of course outgrown. Seriously...KIDS GROW!!!!!! That's the whole point of all of this therapy and treating for life!
I will be calling the pharmacy to check on a medicine he takes for him metabolic disease to see when exactly it will be in stock. Since Max is the only patient in the entire Walgreen's database that takes it, they have to order from the manufacturer. Which is perfect, since we are completely OUT!
You see, these are just the things at the top of my mind at 12:30 on a Sunday morning. Things that keep me up. My list of health care issues that are faced on a daily and weekly basis around here.
So at the end of my day...the fighters for their side of health care reform, can have their fights. They can yell and picket at the townhall meetings...they can agree completely with a totally new system. Because there are people in this country that just like to argue.
And I will fall back exhausted, without an ounce of fight in me over things that the majority of the public doesn't even understand. Just wishing that some of those people so heated about it all would make it so even one of the things on my list was easier at the end of the day.
Thursday, August 13, 2009
For the moms...
Saw this today on one of the blogs I follow for parents of Special Needs. I thought it was great for all moms. Then I saw my friend, Jenny posted it too, and wanted to share it here too.
The Invisible Mother
Written by Deborah
Monica, one of the best moms in the world to one of the most beautiful little girls in the world sent me the article below. I loved it and know you will also.
The Invisible Mother ……
It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously, not.
No one can see that I'm on the phone, or cooking, or vacuuming the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The Invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?
Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to
order, 'Can you pick me up at 5:30?'
One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.'
It was a book on the great cathedrals of Europe.
I wasn't exactly sure why she'd given it to me until I read her inscription:
'To Charlotte , with admiration for the greatness of what you are building when no one sees.'
In the days ahead I would read - no, devour - the book. And I would discover what would become for me, 4 life-changing truths, after which I could pattern my work:
1. No one can say who built the great cathedrals - we have no record of their names.
2. These builders gave their whole lives for a work they would never see finished.
3. They made great sacrifices and expected no credit.
4. The passion of their building was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam
that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'
I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no
cupcake you've baked, is too small for me to notice and smile about. You are building a great cathedral, but you can't see right now what it will become.'
At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life.
It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.
The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.
When I really think about it, I don't want my daughter to tell the friend she's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want her to want to come home. And then, if there is anything more to say to her friend, to add, 'You're gonna love it there.'
As mothers, we are building great cathedrals. We cannot see if we're doing it right.
And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.
Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at .Pipecleaner Dreams.
Also, today is Dairy Queen Miracle Treat Day. So go get a blizzard and help out The Children's Hospitals in your area!
The Invisible Mother
Written by Deborah
Monica, one of the best moms in the world to one of the most beautiful little girls in the world sent me the article below. I loved it and know you will also.
The Invisible Mother ……
It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously, not.
No one can see that I'm on the phone, or cooking, or vacuuming the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The Invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?
Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to
order, 'Can you pick me up at 5:30?'
One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.'
It was a book on the great cathedrals of Europe.
I wasn't exactly sure why she'd given it to me until I read her inscription:
'To Charlotte , with admiration for the greatness of what you are building when no one sees.'
In the days ahead I would read - no, devour - the book. And I would discover what would become for me, 4 life-changing truths, after which I could pattern my work:
1. No one can say who built the great cathedrals - we have no record of their names.
2. These builders gave their whole lives for a work they would never see finished.
3. They made great sacrifices and expected no credit.
4. The passion of their building was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam
that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'
I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no
cupcake you've baked, is too small for me to notice and smile about. You are building a great cathedral, but you can't see right now what it will become.'
At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life.
It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.
The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.
When I really think about it, I don't want my daughter to tell the friend she's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want her to want to come home. And then, if there is anything more to say to her friend, to add, 'You're gonna love it there.'
As mothers, we are building great cathedrals. We cannot see if we're doing it right.
And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.
Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at .Pipecleaner Dreams.
Also, today is Dairy Queen Miracle Treat Day. So go get a blizzard and help out The Children's Hospitals in your area!
Wednesday, August 12, 2009
A year on...
Last year on August 12th, our lives changed forever...twice.
At around 2:00am I got a text from my mom, "It's a girl, Adeline May". Around 6:00am we got up to take Max in for his g-tube surgery.
Before we left for the hospital, I snapped a picture of Max's belly. I wanted to get a shot of it before there was a hole there, before there was a piece of plastic sticking out of it, or a scar if it was ever removed.
A year later, I look at it and think, oh my gosh he was skinny. Too skinny. Which is why we got the gtube in the first place. But oh my...so skinny.
And lanky too! Here he is, all 28 pounds of him.
But it's amazing what a year can do. Here he is tonight...45 pounds now.
And still lanky...but chunky too!
We've come a long way in just a short year! He's healthy, and so big and strong. Which makes all of the worry and frustration and guilt I had about the decision to get him the g-tube worth it!
And the other life-changer on August 12th last year...this precious little baby niece. Baby Adeline!
She's changed a lot in the year too.
But one thing has remained...these two are like twins born 5 years apart. They L-O-V-E each other!
I mean love love love love LOVE each other.
I'll leave you with a couple of clips of Max and Addie's interactions.
He's enamored with her, and she dotes on him. She's so careful with him, and he's learning to be careful with her. Luckily they are both very tolerant of each other as they both learn!
Here is one of my favorite interactions I've seen with them, and luckily got a video of it.
At around 2:00am I got a text from my mom, "It's a girl, Adeline May". Around 6:00am we got up to take Max in for his g-tube surgery.
Before we left for the hospital, I snapped a picture of Max's belly. I wanted to get a shot of it before there was a hole there, before there was a piece of plastic sticking out of it, or a scar if it was ever removed.
A year later, I look at it and think, oh my gosh he was skinny. Too skinny. Which is why we got the gtube in the first place. But oh my...so skinny.
And lanky too! Here he is, all 28 pounds of him.
But it's amazing what a year can do. Here he is tonight...45 pounds now.
And still lanky...but chunky too!
We've come a long way in just a short year! He's healthy, and so big and strong. Which makes all of the worry and frustration and guilt I had about the decision to get him the g-tube worth it!
And the other life-changer on August 12th last year...this precious little baby niece. Baby Adeline!
She's changed a lot in the year too.
But one thing has remained...these two are like twins born 5 years apart. They L-O-V-E each other!
I mean love love love love LOVE each other.
I'll leave you with a couple of clips of Max and Addie's interactions.
He's enamored with her, and she dotes on him. She's so careful with him, and he's learning to be careful with her. Luckily they are both very tolerant of each other as they both learn!
Here is one of my favorite interactions I've seen with them, and luckily got a video of it.
Monday, August 10, 2009
Denial...
“Denial ain't just a river in Egypt.”
Mark Twain
When Max was almost one year old, we had a physical therapy appointment that shook me to the core. Steve was living/working in California at the time, and I remember calling bawling my eyes out on the way home.
The therapist had the nerve to tell me that we needed to get Max a wheelchair. A WHEELCHAIR! At that time I guess I was still under the impression that we would just get him to sit up and then stand up and then walk. Why on earth would we need to get him a wheelchair? I didn't want some big clunky metal wheelchair to put my little baby in!
After I came off of my crying fit, I started to realize that I was in a sort of denial about Max's physical abilities. And that was maybe the hardest part of the whole situation. It was likely that Max would need a wheelchair...and if that was the probability...then maybe he would ALWAYS need a wheelchair. That was a hard thing to comprehend.
Max has had several wheelchairs since then. He's getting to the point where he's about outgrown the ones he has, and we'll need to get him another one. And a bigger Max means a bigger wheelchair. And a bigger wheelchair means a bigger car. And maybe, just maybe I won't be able to lift him into that car anymore. Maybe, just maybe I won't be able to lift him at all anymore.
Denial.
It's back. After several years of feeling like a rock-star when it came to being a special mom to a special kid, taking him across the pond and back, moving cross-country and back, traveling here and there, carrying him around at will...I'm finding I can't do those things anymore.
Today I took Max to the mall by myself to meet my sister. As I was putting him in his car seat I thought, #1 I hope I don't drop him!, #2 I hope I don't hurt myself! #3 How am I going to get him out once we get there and back in?!
I've been going along, seeing him grow, knowing he's getting bigger, but still thinking I can tote him around like the little peanut he once was. Denying that in truth, he is much too big for me to be lifting. Or carrying, or holding all day on his attached days.
We went to the doctor last week for an exam and to try to figure out why he's been waking so much in the night, having fitful nights of sleep. We're still working on that issue, but we did go away knowing that he weighs 45 pounds. And is 46 inches tall. I am 5'4" and 130 pounds. Next year will he be 5 feet? Weighing closer to 100 pounds?
I'm sure this issue of thinking life is one thing, and realizing one day it's all together different will always be the case with Max. But for now, we got a new tool to help ease into the transitions of reality.
Last month, I was looking on Craigslist for special needs equipment...you know just to pass the time. I found a Hoyer lift. These machines cost around $2,000 brand new. This one on Craigslist was $100. (Yes only two zeros) It had only been used two times before the previous user passed away. Our DME rep. told us we would need to wait a year before trying to get Max one because of all of the equipment we were needing to get this year, so we went ahead an bought this one we found.
Steve went to pick it up, and we ordered a sling to fit Max to lift him. Last week, we got the sling, and here are the results.
Here he is in his Chill-out Chair. He's not sleeping, the flash just made him close his eyes. I've got the sling under him at this point because I had used the lift previously to put him in the chair to eat, and just left it under him.
I moved the chair within the legs of the lift to get him right under the arms.
Got him all hooked in and ready for take-off.
Here's a short video of him going up...don't mind the Tarzan soundtrack in the background...we were rocking out!
And now he's up, out of his chair, and ready to be moved to the floor for a diaper change, to his bed, or to a bath!
This time, he was being put down for a diaper change after eating. Here's a video showing how slowly and gently and puts him down. And how comfortable he is with it.
It's helping. But I am still finding myself wanting to quickly move him, or carry him, or hold him like I think I can. But with every manual lift I remember, there are tools to help me care for him. I just have to move out of the way of myself and use them. They are just tools...to help in the care for Max. They are not Max. And if I can remember that, I think the denial won't creep up on me so much.
Mark Twain
When Max was almost one year old, we had a physical therapy appointment that shook me to the core. Steve was living/working in California at the time, and I remember calling bawling my eyes out on the way home.
The therapist had the nerve to tell me that we needed to get Max a wheelchair. A WHEELCHAIR! At that time I guess I was still under the impression that we would just get him to sit up and then stand up and then walk. Why on earth would we need to get him a wheelchair? I didn't want some big clunky metal wheelchair to put my little baby in!
After I came off of my crying fit, I started to realize that I was in a sort of denial about Max's physical abilities. And that was maybe the hardest part of the whole situation. It was likely that Max would need a wheelchair...and if that was the probability...then maybe he would ALWAYS need a wheelchair. That was a hard thing to comprehend.
Max has had several wheelchairs since then. He's getting to the point where he's about outgrown the ones he has, and we'll need to get him another one. And a bigger Max means a bigger wheelchair. And a bigger wheelchair means a bigger car. And maybe, just maybe I won't be able to lift him into that car anymore. Maybe, just maybe I won't be able to lift him at all anymore.
Denial.
It's back. After several years of feeling like a rock-star when it came to being a special mom to a special kid, taking him across the pond and back, moving cross-country and back, traveling here and there, carrying him around at will...I'm finding I can't do those things anymore.
Today I took Max to the mall by myself to meet my sister. As I was putting him in his car seat I thought, #1 I hope I don't drop him!, #2 I hope I don't hurt myself! #3 How am I going to get him out once we get there and back in?!
I've been going along, seeing him grow, knowing he's getting bigger, but still thinking I can tote him around like the little peanut he once was. Denying that in truth, he is much too big for me to be lifting. Or carrying, or holding all day on his attached days.
We went to the doctor last week for an exam and to try to figure out why he's been waking so much in the night, having fitful nights of sleep. We're still working on that issue, but we did go away knowing that he weighs 45 pounds. And is 46 inches tall. I am 5'4" and 130 pounds. Next year will he be 5 feet? Weighing closer to 100 pounds?
I'm sure this issue of thinking life is one thing, and realizing one day it's all together different will always be the case with Max. But for now, we got a new tool to help ease into the transitions of reality.
Last month, I was looking on Craigslist for special needs equipment...you know just to pass the time. I found a Hoyer lift. These machines cost around $2,000 brand new. This one on Craigslist was $100. (Yes only two zeros) It had only been used two times before the previous user passed away. Our DME rep. told us we would need to wait a year before trying to get Max one because of all of the equipment we were needing to get this year, so we went ahead an bought this one we found.
Steve went to pick it up, and we ordered a sling to fit Max to lift him. Last week, we got the sling, and here are the results.
Here he is in his Chill-out Chair. He's not sleeping, the flash just made him close his eyes. I've got the sling under him at this point because I had used the lift previously to put him in the chair to eat, and just left it under him.
I moved the chair within the legs of the lift to get him right under the arms.
Got him all hooked in and ready for take-off.
Here's a short video of him going up...don't mind the Tarzan soundtrack in the background...we were rocking out!
And now he's up, out of his chair, and ready to be moved to the floor for a diaper change, to his bed, or to a bath!
This time, he was being put down for a diaper change after eating. Here's a video showing how slowly and gently and puts him down. And how comfortable he is with it.
It's helping. But I am still finding myself wanting to quickly move him, or carry him, or hold him like I think I can. But with every manual lift I remember, there are tools to help me care for him. I just have to move out of the way of myself and use them. They are just tools...to help in the care for Max. They are not Max. And if I can remember that, I think the denial won't creep up on me so much.
Saturday, August 1, 2009
Surprise...
Have you guessed my surprise yet?
STINKY BABY NIECE!!!!!!!!!
She climbs the stairs...
And wants to know why Aunty is following her...
And walks up the stairs...and her mommy...my sister...who has, brought her family home and will be staying with us until they get settled into their own place!!!!
Let the good times roll!
STINKY BABY NIECE!!!!!!!!!
She climbs the stairs...
And wants to know why Aunty is following her...
And walks up the stairs...and her mommy...my sister...who has, brought her family home and will be staying with us until they get settled into their own place!!!!
Let the good times roll!
The short and skinny...
I could make this a long dramatic post about what I've learned and yadda yadda yadda...but the short and skinny of it is...I took my CNA test yesterday and passed the written test, but failed one skill out of five on the skills test. It was a ridiculous mistake, one I absolutely should have caught, but my nerves got the best of me and I read the scale wrong. Instead of seeing the patient weighed 155, I saw 130. It was a split second decision, but once I wrote it down and said I was finished, there was no going back to correct it, and I caught it was wrong immediately!
I finished all 4 of the rest of my skills perfectly, but felt humiliated and embarrassed and totally like I had let myself down. I left the testing room in tears, and knew I had failed it. (You fail even one portion, you fail the whole thing). I had sat there from 7:30 yesterday morning, and was the very last person to test. I was spent, exhausted, and just completely over it. And as soon as she told me I just bawled and bawled. I'd worked so hard to get it right and messed up something so stupid.
I came home and cried more...and kicked myself a few more times. But I know it was just one of those moments in time that happen in life...and surely I'll learn from it...and go back and do it perfectly! I have to send in the fail results and re-test at the earliest date they have. In the mean time, my "trial period" is up with working as Max's CNA. I have to be certified by the state to continue on. So I will be taking a break from that until I'm fully certified. Luckily I only have to do the skills, not the written portion again.
Today, I'm up and doing all the things a mommy does...especially when that mommy has to do things a CNA would do. And that's frustrating to me. Knowing I know it...but I'll drop the CNA status for a while and just be mommy. I prefer that title any day.
I'll keep you all posted about when my next test will be!
Oh...and as for the surprise for today...the stinkiness is
on their way home...and will be staying with us for a while...
Now if that's not something to smile about...I don't know what is!
I finished all 4 of the rest of my skills perfectly, but felt humiliated and embarrassed and totally like I had let myself down. I left the testing room in tears, and knew I had failed it. (You fail even one portion, you fail the whole thing). I had sat there from 7:30 yesterday morning, and was the very last person to test. I was spent, exhausted, and just completely over it. And as soon as she told me I just bawled and bawled. I'd worked so hard to get it right and messed up something so stupid.
I came home and cried more...and kicked myself a few more times. But I know it was just one of those moments in time that happen in life...and surely I'll learn from it...and go back and do it perfectly! I have to send in the fail results and re-test at the earliest date they have. In the mean time, my "trial period" is up with working as Max's CNA. I have to be certified by the state to continue on. So I will be taking a break from that until I'm fully certified. Luckily I only have to do the skills, not the written portion again.
Today, I'm up and doing all the things a mommy does...especially when that mommy has to do things a CNA would do. And that's frustrating to me. Knowing I know it...but I'll drop the CNA status for a while and just be mommy. I prefer that title any day.
I'll keep you all posted about when my next test will be!
Oh...and as for the surprise for today...the stinkiness is
on their way home...and will be staying with us for a while...
Now if that's not something to smile about...I don't know what is!
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