Happy Birthday Beebo!
Wednesday, September 18, 2013
Wednesday, August 14, 2013
If time passes between posts...
It's not because I don't want to post, but I'm busy building cathedrals...
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 if I’m on the phone, or cooking, or sweeping 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, ‘Right around 5:30, please.’
Some days I’m a crystal ball; ‘Where’s my other sock? Where’s my phone?, What’s for dinner?’
I was certain that these were the hands that once held books and the eyes that studied history, music and literature -but now, they had disappeared into the peanut butter, never to be seen again. She’s going, she’s going, and she’s gone!
One night, a group of us were having dinner, celebrating the return of a friend from England . She 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 she 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: ‘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, four 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 story of legend 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. 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, no Cub Scout meeting, no last minute errand is too small for me to notice and smile over. You are building a great cathedral, but you can’t see right now what it will become.
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 son to tell the friend he’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 3 hours and presses all the linens for the table.’ That would mean I’d built a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, he’d say, ‘You’re gonna love it there…’
As mothers, we are building great cathedrals. We cannot be seen 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 mothers.
—Anonymous
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 if I’m on the phone, or cooking, or sweeping 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, ‘Right around 5:30, please.’
Some days I’m a crystal ball; ‘Where’s my other sock? Where’s my phone?, What’s for dinner?’
I was certain that these were the hands that once held books and the eyes that studied history, music and literature -but now, they had disappeared into the peanut butter, never to be seen again. She’s going, she’s going, and she’s gone!
One night, a group of us were having dinner, celebrating the return of a friend from England . She 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 she 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: ‘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, four 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 story of legend 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. 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, no Cub Scout meeting, no last minute errand is too small for me to notice and smile over. You are building a great cathedral, but you can’t see right now what it will become.
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 son to tell the friend he’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 3 hours and presses all the linens for the table.’ That would mean I’d built a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, he’d say, ‘You’re gonna love it there…’
As mothers, we are building great cathedrals. We cannot be seen 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 mothers.
—Anonymous
Friday, July 12, 2013
The end of an adventure
Here's the final, week 8 comparison picture between our broiler birds and our newest laying hens.
Slaughtering took a lot more time than we anticipated (26 birds took about 6 hours), but we finally got a little assembly line system going. We estimate all of the birds gave us anywhere from 5.5-7.5 pounds each. We were even able to give the chicken feet a home (apparently they're a delicacy in China and a co-worker was ecstatic to take them all off our hands... evening preparing them and sending a few back for us to try!). I'm slow cooking up the bones to make chicken stock. The only parts we didn't use were the heads and the feathers, so I'm very happy with that. And, since we know exactly what they ate and how they were raised, I'm going out on a limb to say mine are better than organic+!
This was a pretty cool experience, but was a LOT more work than I anticipated. I think specifically because Mr. was gone for a few weeks and cleaning, feeding, and watering multiple times per day fell solely to me. Will I do it again... hmmm... ask me after I've eaten a few of these and the memories of the poo and flies fades.
Slaughtering took a lot more time than we anticipated (26 birds took about 6 hours), but we finally got a little assembly line system going. We estimate all of the birds gave us anywhere from 5.5-7.5 pounds each. We were even able to give the chicken feet a home (apparently they're a delicacy in China and a co-worker was ecstatic to take them all off our hands... evening preparing them and sending a few back for us to try!). I'm slow cooking up the bones to make chicken stock. The only parts we didn't use were the heads and the feathers, so I'm very happy with that. And, since we know exactly what they ate and how they were raised, I'm going out on a limb to say mine are better than organic+!
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| Before we parted most of them up and froze them. |
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| My poor refrigerator was bursting! |
This was a pretty cool experience, but was a LOT more work than I anticipated. I think specifically because Mr. was gone for a few weeks and cleaning, feeding, and watering multiple times per day fell solely to me. Will I do it again... hmmm... ask me after I've eaten a few of these and the memories of the poo and flies fades.
Friday, June 28, 2013
mmm... chicken.
So, it's been 6 weeks since my graceful fall. I limped along for a few weeks and just this past week am finally NOT limping, bending my knee, and have actually gone up stairs without pain (coming down is still not quite perfect yet!). I did end up getting a CT scan done when the leg got to this point:
It just showed severe soft tissue damage and the treatment was a brace and stay off of it (apparently I have a post in my foot that prevents me from having an MRI done... who knew?!?). Staying off of it... yeah, I'll get right on that.
Meanwhile, my broilers came (along with 3 Plymouth Barred Rock girls to add to my egg layers) and it is truly indescribable how fast they grow, how much they eat, and how much they stink! I have experience with chickens, but these are really franken-chickens... meant to be used solely for their meat. They aren't pumped full of nastiness or any chemicals, just selectively bred to grow big, really fast. And, they are going to be completely organic (because I pretty much know everything they are eating and drinking and doing all day long!), so that's an exciting thought. However, they aren't pretty. They don't have good personalities. They aren't anything like "my girls". It's pretty easy to not get attached to them. We've got 2 weeks left 'til d-day...
Now, excuse me while I go find the perfect wing sauce recipe!
It just showed severe soft tissue damage and the treatment was a brace and stay off of it (apparently I have a post in my foot that prevents me from having an MRI done... who knew?!?). Staying off of it... yeah, I'll get right on that.
Meanwhile, my broilers came (along with 3 Plymouth Barred Rock girls to add to my egg layers) and it is truly indescribable how fast they grow, how much they eat, and how much they stink! I have experience with chickens, but these are really franken-chickens... meant to be used solely for their meat. They aren't pumped full of nastiness or any chemicals, just selectively bred to grow big, really fast. And, they are going to be completely organic (because I pretty much know everything they are eating and drinking and doing all day long!), so that's an exciting thought. However, they aren't pretty. They don't have good personalities. They aren't anything like "my girls". It's pretty easy to not get attached to them. We've got 2 weeks left 'til d-day...
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| 2 weeks old. L: Barred Rock / R: Broiler |
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| 4 weeks old. |
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| 6 weeks old. |
Now, excuse me while I go find the perfect wing sauce recipe!
Thursday, May 23, 2013
Graceful
Believe it or not, I was a dancer. I took 11 years of dance lessons and was in competition Dance Troupe during high school. That does not, however, translate to grace apparently.
In the midst of talking, tossing my son's athletic support to my husband (hey, he was chafing after 4 back to back tournament games in hot weather!), wearing flip flops, and walking up bleachers at a baseball game, I bit it. Not a "oh, whoops, that-was-embarrassing" kind of slip but an "all-of-my-weight-just-landed-on-my-knee-slammed-against-the-bleacher-and-my-leg-looks-and-feels-broken" kind of fall. Yes, this is what my parent's investment in years of dance training landed me over the weekend:
So, of course the doctor wants an MRI of my MCL. I asked her if I could have one more week to see if it gets any better and she begrudgingly obliged. I am holding out hope that it gets better! She put me on an aspirin regimen to keep the blood flowing and keep any clots from forming. In the meantime, I'll just be a little gimpy... but hey, at least the money they spent on braces worked out okay!
In the midst of talking, tossing my son's athletic support to my husband (hey, he was chafing after 4 back to back tournament games in hot weather!), wearing flip flops, and walking up bleachers at a baseball game, I bit it. Not a "oh, whoops, that-was-embarrassing" kind of slip but an "all-of-my-weight-just-landed-on-my-knee-slammed-against-the-bleacher-and-my-leg-looks-and-feels-broken" kind of fall. Yes, this is what my parent's investment in years of dance training landed me over the weekend:
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| Day 1: kind of swollen and sore, but over not too bad |
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| Day 2: uh, oh - not sure my knee is supposed to be that size... and I think it should bend, right? |
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| Day 3: more swelling and the bruising begins... more pain and having trouble with range of motion |
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| And, a lovely shade of purple on my thigh... I blame it on massive amounts of soft tissue located there :) |
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| Day 4: broke down and went to the doctor because of more discoloration/mottling, persistent pain & swelling (albiet better) and blood pooling in my foot/ankle |
So, of course the doctor wants an MRI of my MCL. I asked her if I could have one more week to see if it gets any better and she begrudgingly obliged. I am holding out hope that it gets better! She put me on an aspirin regimen to keep the blood flowing and keep any clots from forming. In the meantime, I'll just be a little gimpy... but hey, at least the money they spent on braces worked out okay!
Wednesday, April 24, 2013
a new challenge... part 2
Let me start "Part 2" by saying that as a follow up to my previous post, I really am in an okay place with this... it just generally sucks. I know that there are other families who go through oh-so-much more. They have far more devastating things with which to deal. So know that I am not complaining, but I am just sharing how I genuinely feel.
The basic growth pattern for a child's face is that the lower jaw grows down and forward, then the upper portion of the skull follows, down and forward. Since Beebo's lower jaw on the left is not growing adequately, the upper portion of his skull cannot grow adequately either (even though it has the ability to do so). So, basically, the entire left side of his face is staying the same size while the right side grows... hence, the more noticeable changes to the structure of his face over the last year or so.
Like I said before, it's hard to predict the future, but a basic plan of action for Beebo is this:
The basic growth pattern for a child's face is that the lower jaw grows down and forward, then the upper portion of the skull follows, down and forward. Since Beebo's lower jaw on the left is not growing adequately, the upper portion of his skull cannot grow adequately either (even though it has the ability to do so). So, basically, the entire left side of his face is staying the same size while the right side grows... hence, the more noticeable changes to the structure of his face over the last year or so.
Like I said before, it's hard to predict the future, but a basic plan of action for Beebo is this:
- This summer, we will remove at least one impacted molar. His "6 year" molar on the lower left has not erupted, because it can't - it's trapped under his "12 year" molar. We need to sacrifice at a minimum the "12 year" molar to see if the "6 year" will come in. We may need to sacrifice both of them, but we won't know until the oral surgeon gets in there.
- Once the molars are out of there, the mandible can fill in with bone and give us a more solid, stable place to affix any type of treatment. We'll wait 6 months for it to fill in completely with bone after the extraction.
- In March, we'll go back to Iowa and get a third Cone Beam CT Scan. This will give the doctor several scans over a 15 month period to assess how much growth is happening on the left side of the face.
- Next summer (2014) at age 9, the plan is to do a rib graft surgery to replace the deformed/missing portion of his condyle and mandible. They will remove either his 5th or 7th rib on the right side, shape it, and secure it onto the mandible. His jaw will be splinted and then wired shut for about 3 weeks. The hope is that the rib will continue to grow, allowing the upper face to grow as well, slowing down or, best case scenario, stopping the rate of deformity.
- Braces will follow, somewhere around age 12.
- IF the graft does not grow significantly or enough, he will be facing another surgery around age 15 - a mandibular distraction. His mandible will be separated into 2 pieces, then a distraction device will be secured to it and the split will be slowly increased over the course of a couple weeks. When it is in the right place, it will be secured and new bone will fill in the gap. This process takes about 3 months.
- IF, when he is finished growing around age 19, he is not happy with his appearance, he can opt for a final orthognathic surgery. This surgery would be pretty much cosmetic in nature and this will be his choice.
Wednesday, April 17, 2013
a new challenge... part 1
This post has been in draft status for a while. I keep coming back to it but have never completed it to share. I don't know why - I was probably digesting. I know I was praying. But I'm also a reader; a study-er. I crave knowledge and I'm sure I was so intent on knowing as much as possible that it encompassed the situation. But now, we've seen 3 doctors since August, most recently yesterday, and people are asking, so I guess it's time.
Well, apparently that crooked smile was indicative of a bigger problem. After being sent from dentist to orthodontist to oral surgeon to a local craniofacial doc to a top craniofacial team out of state, we have a confirmed diagnosis of Hemifacial Microsomia. HFM is a birth defect that occurs during the first 6-8 weeks of pregnancy (interestingly enough, at the same time as inner ear structures form... coincidence for Beebo and Sis? Hostile uterus, party of 1.).
What we know so far about Beebs' HFM:
You probably all know that my Beebo has always had the cutest little crooked smile.
Well, apparently that crooked smile was indicative of a bigger problem. After being sent from dentist to orthodontist to oral surgeon to a local craniofacial doc to a top craniofacial team out of state, we have a confirmed diagnosis of Hemifacial Microsomia. HFM is a birth defect that occurs during the first 6-8 weeks of pregnancy (interestingly enough, at the same time as inner ear structures form... coincidence for Beebo and Sis? Hostile uterus, party of 1.).
With HFM, basically, 1/2 of the face, typically the lower face, is underdeveloped and does not grow normally. It often affects jaws, teeth, cheek tissue, orbital size, ears, and facial nerves. A commonly accepted range of severity regarding the mandible (jaw) is the Pruzansky classification. In this system, Beebo has been diagnosed as a IIB (moderate) severity. He has a full lower mandible, but it is very small and deformed.
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| Pruzansky Classification |
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| Beebo's face |
What we know so far about Beebs' HFM:
- His lower left mandible is not fully developed and is not growing adequately or in proportion to the rest of his face
- His left eye socket is smaller
- His left upper mandible is misshapen
- Some adult teeth are unable to erupt because they are not in the right places and there is not enough bone to support them
- He has less fatty tissue and bone structure in his left cheek
- His left ear is folded
BUT, let's talk about the positives in this, because they are there! His left eye has perfect vision and his left ear is present (many kids are missing an ear) and hears just fine. He has no facial nerve involvement and thus no paralysis. He does not have any involvement of the soft tissue of the mouth, throat, or trachea that impairs his speech, swallowing, or breathing. These are all things that are common issues with his level of severity, so we are grateful. So very grateful!!
As he continues to grow, his appearance will continue to change, as will the functionality of his jaw, his bite, possibly his speech. We have to medically intervene and that's where this momma begins to shudder. I'm trying to see the big picture. I'm trying to feel blessed in my life. I'm trying to cling to those positives listed up there. But, right now, I feel sick. I feel cheated. I feel sad and angry, then little bits of relief that it's not worse. Mostly, I feel like stomping my feet and shaking my fist and shouting "This is NOT fair! Haven't my kids been through enough? Why does my body fail these kids?"
I've been in the midst of these feelings before. They will leave and then out of the blue, they will try to come back. They aren't welcome here. They aren't my friends, but realistically I'll let them in to stay for a while before I kick them out. I know this cycle well.
I'll update on the plan of action in my next post. It's difficult to have anything definitive yet, but we do have a straw man outline of the next few years.
As he continues to grow, his appearance will continue to change, as will the functionality of his jaw, his bite, possibly his speech. We have to medically intervene and that's where this momma begins to shudder. I'm trying to see the big picture. I'm trying to feel blessed in my life. I'm trying to cling to those positives listed up there. But, right now, I feel sick. I feel cheated. I feel sad and angry, then little bits of relief that it's not worse. Mostly, I feel like stomping my feet and shaking my fist and shouting "This is NOT fair! Haven't my kids been through enough? Why does my body fail these kids?"
I've been in the midst of these feelings before. They will leave and then out of the blue, they will try to come back. They aren't welcome here. They aren't my friends, but realistically I'll let them in to stay for a while before I kick them out. I know this cycle well.
I'll update on the plan of action in my next post. It's difficult to have anything definitive yet, but we do have a straw man outline of the next few years.
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