So sometimes Adam and I have these little phrases we get stuck on that we say a lot. I guess they are just like "inside jokes" between friends. And our most recent phrase is "punch you in the face." For Adam--funny guy's guy, athlete, pal, jokester--this is no problem. He says, "If you don't pick that up, I'm gonna punch you in the face" and it seems a little extreme and everybody laughs and he is just silly Adam. But when I say it, people look at me as if I have suddenly gone mad. It is just too far across that line of appropriateness for a "mother" to say I suppose, so now I guess I am doomed to boringness and smiling at my husband while he says all the funny things.
However, there are a few times when the general public might just salute a mother for punching someone in the face. For instance, a few weeks ago, we took Connor to Shriner's Hospital in Lexington. I wanted to find out if there was any additional equipment out there I didn't know about that might help him...maybe some type of wheelchair, or walker, or brace that might be helpful to him. I was thinking, "Hey, this is Shriner's Hospital. They are here specifically to help the "crippled" children. Maybe they know about something I don't." So after waiting for the doctor for 2 1/2 hours we finally see him, and I explain our whole story and what I am looking for and what does he say to me? He says that with these kids with this disease sometimes we need to "adjust our expectations" of what they are going to be able to do.
I almost had to look around to see if he was really talking to me. Was I asking for a miracle cure? Had I not been living with this diagnosis for months now? I was trying to be so practical and realistic about what might help my child, and he had to say something so negative and demeaning. I am sure he thought he was helping me face some reality, but I was so many levels past that is just wasn't even relevant or helpful--so much to the point it was quite rude.
Now you ask, was I mad enough to punch him in the face? Why yes, of course. Would it have been acceptable? If I surveyed the general public, I think even despite my "mom" status, I might have been able in that circumstance to get by with a punch in the face--especially after our long wait that he had put us and everyone else through, along with the fact that I also know I am not the first SMA family he has said that same thing to. And if not a punch, maybe just a smart slap.
But alas, I did not punch, nor did I slap. I just talk quickly with an agitated tone until I calmed down enough to talk evenly and make sense again. However, I do think maybe some people could use a good punch once in awhile--just to knock the sense back into them.
Ding! Round One--Me.
Wednesday, July 16, 2008
Thursday, June 26, 2008
The Secret Blog and a Poop Story for Sheryll
So Sheryll calls me up and tells me to get a blog. That sort of sounds like "get a life", which I really shouldn't be offended by, because there are a lot of way in which I really do need to get a life, and Sheryll is one of those rare friends that I you can talk to after not talking to forever and it is like you've only been apart for minutes. Things just fall back into their comfortable places and you're laughing and smiling in no time. So her "get a blog/life" didn't offend me in the least. And I had to tell her about this--my secret blog. Yes, I know what you're thinking...who on earth has a blog that no one reads? Yup, that's me. And then I had to tell her that well, it is pretty much just a bunch of depressing stuff about my now depressing life. So she gave me a one week deadline to make revisions to make it ok for other people to read, and then I had to send her the link.
So, I thought and thought about what to change, and read it (and cried about it all again), and then I just decided that it may all be depressing, but it is all exactly true, and it is all my life it complete honesty, and I just don't want to change it, and I'm not going to cause she's not the boss of me. :)
However, in order to spice things up a little and in an attempt to make things a little happier for Sheryll, I will now add a story about poop and a fish for Sheryll.
So this week Jenna and I took Connor to the zoo. One of my very least places at the zoo is the penguin room in the "Islands" exhibit. First of all, when you get within like 100 feet of the room you can smell the room because they totally reek. And they put them in this tiny room with rushing water that is really loud, and though they are tiny little birds they can squawk sooo loud. I don't like any bird exhibits in general because as a child at the zoo I had a "bad experience." (My mom made me sit on this bench under a tree to wait for her and a bird in the tree pooped on my face. True story.) So of course Jenna insists on seeing them.
So I slowly push the stroller into the double doors that are the entrance to the penguin room. I am overcome by the rush of stinkiness and when I open my eyes, I see that only one other family is in the room with us, and then there is some zookeeper woman standing inside the exhibit feeding fish to the penguins, making them squawk extra special loud. All the penguins seem to be waddling their way toward her in a creepy sort of way. And there is this weird eerie
lighting in the room that I swear was straight out of an Alfred Hitchcock movie. So Jenna turns to me and says, "It's too bad penguins can't fly." And I look at her and say,"Penguins can't fly?" and right at that moment I guess something ticked them off--maybe we insulted them?--because all the sudden they all took off and started flying out of the exhibit and all around room (which did not have a high ceiling, I might add). So of course my first thought is,"Oh my gosh, me and my baby are gonna get pooped on by a penguin!" So I start screaming and running for the door across the room. We get there and not only is it locked, but it is chained--not joking--padlocked and chained--closed. So, still screaming, I turn the strolling around and go running back for the other door with penguins swooping around my head. And then, just as I get up the the other door, I look up and see this penguin with a big fish in his mouth perched on a rock just above the door. And I look at him and he looks at me and I know he is just waiting to throw that thing at me. And just when I make up my mind that a fish is better that poop and I am ready to make a break through the door, this little girl opens the door and takes a step through. And sure enough, that penguin chucks the fish right down on her.
I escaped with my life, and without any poop on me, Jenna, or Connor, but I am totally never going back there again.
So, I thought and thought about what to change, and read it (and cried about it all again), and then I just decided that it may all be depressing, but it is all exactly true, and it is all my life it complete honesty, and I just don't want to change it, and I'm not going to cause she's not the boss of me. :)
However, in order to spice things up a little and in an attempt to make things a little happier for Sheryll, I will now add a story about poop and a fish for Sheryll.
So this week Jenna and I took Connor to the zoo. One of my very least places at the zoo is the penguin room in the "Islands" exhibit. First of all, when you get within like 100 feet of the room you can smell the room because they totally reek. And they put them in this tiny room with rushing water that is really loud, and though they are tiny little birds they can squawk sooo loud. I don't like any bird exhibits in general because as a child at the zoo I had a "bad experience." (My mom made me sit on this bench under a tree to wait for her and a bird in the tree pooped on my face. True story.) So of course Jenna insists on seeing them.
So I slowly push the stroller into the double doors that are the entrance to the penguin room. I am overcome by the rush of stinkiness and when I open my eyes, I see that only one other family is in the room with us, and then there is some zookeeper woman standing inside the exhibit feeding fish to the penguins, making them squawk extra special loud. All the penguins seem to be waddling their way toward her in a creepy sort of way. And there is this weird eerie
lighting in the room that I swear was straight out of an Alfred Hitchcock movie. So Jenna turns to me and says, "It's too bad penguins can't fly." And I look at her and say,"Penguins can't fly?" and right at that moment I guess something ticked them off--maybe we insulted them?--because all the sudden they all took off and started flying out of the exhibit and all around room (which did not have a high ceiling, I might add). So of course my first thought is,"Oh my gosh, me and my baby are gonna get pooped on by a penguin!" So I start screaming and running for the door across the room. We get there and not only is it locked, but it is chained--not joking--padlocked and chained--closed. So, still screaming, I turn the strolling around and go running back for the other door with penguins swooping around my head. And then, just as I get up the the other door, I look up and see this penguin with a big fish in his mouth perched on a rock just above the door. And I look at him and he looks at me and I know he is just waiting to throw that thing at me. And just when I make up my mind that a fish is better that poop and I am ready to make a break through the door, this little girl opens the door and takes a step through. And sure enough, that penguin chucks the fish right down on her.
I escaped with my life, and without any poop on me, Jenna, or Connor, but I am totally never going back there again.
Friday, May 2, 2008
Night Swimming
Tonight I have some sort of cold, and whether it is the congestion or sore throat--I can't sleep. I'd really like to blame it on that, but I think the real reason is what keeps waking me up around 1:00 am every night...I just can't stop thinking about Connor. I wake up and think "Oh, I need to call this doctor" or " I need to request this paper" or "Should I be investigating that treatment more? Who can I talk to about it??"
I have recently talked to some other parents via chat groups about SMA stuff in general. I think it has been helpful in one important way. It kind of makes what we are going through and feeling seem more "normal." I'm not sure if I am supposed to want to feel that way, but I do. Maybe it is something left over from my teenage years, where we all seek to fit in. Hmmm... I think it probably has more to do with the fact that our whole world has changed.
Speaking of that, I found this incredible poem on a website:
Welcome to Holland
http://www.fsma.org/FSMACommunity/DailyLife/parenting/
I think this helped with the whole "feeling normal" thing as well, because it really described exactly what we have been going through, and it kind of opened my eyes to the fact that lots and lots of people go through this whose children don't even have SMA.
The other reason I am thinking about Connor is because he has this cold, too. Unfortunately, what sticks out in most of what I have read is that children don't die of SMA, they die of some sort of infection they are not able to fight off because their muscles are too weak. I know Connor could be much, much worse than he is now...but still whenever he coughs I could swear my heart freezes mid-beat as I am paralyzed in fear that this is the beginning of the end, until the millisecond passes and my normal thump-thump returns as I tell myself, "It's just one cough...It's just one cough."
We do have one bit of good news. A couple of days ago we put the big braces on Connor--the ones that go from his feet, have the drop-locks at the knees, and wrap around his thighs. With those on, the locks locked, and the walker, we actually saw our baby stand again. Adam and I were both shocked at how tall our little boy was. Who knew? He was so excited to stand up, too. I know he wants to walk so bad.
It makes me mad at myself and everyone else who said before he was diagnosed that maybe he was just "too scared" to walk. I am feeling a lot of guilt these days. I am pretty sure that when he was walking, he fell down a lot more than other kids...but I just didn't know. He is our first, and I just had nothing to compare him to. I think when I finally did compare him to other kids, I was well on my way of realizing there was something wrong...I saw how fast other kids moved--just a simple swipe of the arm, or jumping up to go somewhere else, and I knew my baby had never and could never do that. But at that point it just added to all the other puzzle pieces that would eventually become our SMA.
But, guilt or not, I am starting to recognize some of the lovely parts of Holland, and I think once we get used to the scenery, we're going to like it here.
I have recently talked to some other parents via chat groups about SMA stuff in general. I think it has been helpful in one important way. It kind of makes what we are going through and feeling seem more "normal." I'm not sure if I am supposed to want to feel that way, but I do. Maybe it is something left over from my teenage years, where we all seek to fit in. Hmmm... I think it probably has more to do with the fact that our whole world has changed.
Speaking of that, I found this incredible poem on a website:
Welcome to Holland
http://www.fsma.org/FSMACommunity/DailyLife/parenting/
I think this helped with the whole "feeling normal" thing as well, because it really described exactly what we have been going through, and it kind of opened my eyes to the fact that lots and lots of people go through this whose children don't even have SMA.
The other reason I am thinking about Connor is because he has this cold, too. Unfortunately, what sticks out in most of what I have read is that children don't die of SMA, they die of some sort of infection they are not able to fight off because their muscles are too weak. I know Connor could be much, much worse than he is now...but still whenever he coughs I could swear my heart freezes mid-beat as I am paralyzed in fear that this is the beginning of the end, until the millisecond passes and my normal thump-thump returns as I tell myself, "It's just one cough...It's just one cough."
We do have one bit of good news. A couple of days ago we put the big braces on Connor--the ones that go from his feet, have the drop-locks at the knees, and wrap around his thighs. With those on, the locks locked, and the walker, we actually saw our baby stand again. Adam and I were both shocked at how tall our little boy was. Who knew? He was so excited to stand up, too. I know he wants to walk so bad.
It makes me mad at myself and everyone else who said before he was diagnosed that maybe he was just "too scared" to walk. I am feeling a lot of guilt these days. I am pretty sure that when he was walking, he fell down a lot more than other kids...but I just didn't know. He is our first, and I just had nothing to compare him to. I think when I finally did compare him to other kids, I was well on my way of realizing there was something wrong...I saw how fast other kids moved--just a simple swipe of the arm, or jumping up to go somewhere else, and I knew my baby had never and could never do that. But at that point it just added to all the other puzzle pieces that would eventually become our SMA.
But, guilt or not, I am starting to recognize some of the lovely parts of Holland, and I think once we get used to the scenery, we're going to like it here.
Monday, April 21, 2008
Miniscule Milestone & Optional Baby
Today I hit a big milestone. The physical therapist came this morning, and after she left I didn't cry one tear! Usually, after any kind of therapy or doctor's appointment, I cry for a brief few minutes or a longer period of time, depending on what I was doing. Today, I have pretty much been home all day and not one tear has been shed.
Unfortunately, I cannot guarantee the crying won't happen later. Friday was really hard for some reason. When I finally got a hold of Adam to talk to him about it, he told me to get a movie so I would stop thinking about everything. So I ran out and rented "The Waitress." I don't know if you have seen this movie, but through almost all of it the main character is pregnant. So I'm sitting there watching this movie, trying not to think about anything sad, and I see the main character holding her new baby and start wondering, "Will I ever be pregnant again?" Totally not helpful to the whole try-to-keep-from-being-emotional thing.
I'll explain a little...A week or so ago we went and talked to a geneticist about Connor's disease. I have to admit I was a little bothered...I guess they expected us to be all completely heartbroken and totally uninformed about what was wrong with him. They kept asking us what we wanted to know about the disease, and I am staring at our "genetic counselor" wondering if she really doesn't realize that it took us a month and a half to get in to see her and we haven't just been sitting around the whole time crying about something we didn't understand. She had some info for us--printed sheets from a website I have already thoroughly researched, and a pamphlet from a foundation set up by parents of a little girl who died from SMA. You'd think the pamphlet would be helpful, but nope--it sure wasn't. They were obviously looking to scare people into feeling so horrible about SMA that they would donate, but it wasn't exactly helpful to parents trying to stay positive about the whole thing.
The only good thing I will say that came out of the meeting was info about our options for having another child.
Option 1: Keep Trying Til You Get It Right
This options means we get pregnant and abort babies until we get one that doesn't test positive for having SMA. Really this is out of the question for us.
Option 2: Give It Your Best Shot
We just get pregnant and hope the odds are actually in our favor this time.
Option 3: Read the End of the Book First
Also called PreImplantation Genetic Determination, or PGD. It's pretty much In Vitro Fertilization, but they pick an egg and sperm that won't give the baby SMA. About $15,000 for the IVF, and an extra $5,000 for the egg/sperm determining. And of course our insurance gives us no coverage for IVF. Also, there is only about a 20-30% chance the embryo will implant...so it could be a total waste of money, time, etc.
Option 4: Find a Greener Pasture
Adopt.
Option 5: Phone a Friend
Get a sperm/egg donor, and use only one sperm/egg from us. Ok, so I hope this doesn't offend anyone, but this totally creeped me out. I guess I should be more open to all this, but it is just the idea of the baby being partly one of us and partly some stranger is just really, well, strange. And surely that would involve some IVF.
So what are we supposed to do? The occupational therapist (OT) said something later about maybe getting sperm/egg from a sibling of ours...okay, that was TOTALLY creepy...so the baby would have us as parents but then have a mom/aunt or dad/uncle? How do you explain that to them? I just gave the OT a polite smile and "Hmmm."
Definitely more to think about...seems like we are learning about more every day.
Unfortunately, I cannot guarantee the crying won't happen later. Friday was really hard for some reason. When I finally got a hold of Adam to talk to him about it, he told me to get a movie so I would stop thinking about everything. So I ran out and rented "The Waitress." I don't know if you have seen this movie, but through almost all of it the main character is pregnant. So I'm sitting there watching this movie, trying not to think about anything sad, and I see the main character holding her new baby and start wondering, "Will I ever be pregnant again?" Totally not helpful to the whole try-to-keep-from-being-emotional thing.
I'll explain a little...A week or so ago we went and talked to a geneticist about Connor's disease. I have to admit I was a little bothered...I guess they expected us to be all completely heartbroken and totally uninformed about what was wrong with him. They kept asking us what we wanted to know about the disease, and I am staring at our "genetic counselor" wondering if she really doesn't realize that it took us a month and a half to get in to see her and we haven't just been sitting around the whole time crying about something we didn't understand. She had some info for us--printed sheets from a website I have already thoroughly researched, and a pamphlet from a foundation set up by parents of a little girl who died from SMA. You'd think the pamphlet would be helpful, but nope--it sure wasn't. They were obviously looking to scare people into feeling so horrible about SMA that they would donate, but it wasn't exactly helpful to parents trying to stay positive about the whole thing.
The only good thing I will say that came out of the meeting was info about our options for having another child.
Option 1: Keep Trying Til You Get It Right
This options means we get pregnant and abort babies until we get one that doesn't test positive for having SMA. Really this is out of the question for us.
Option 2: Give It Your Best Shot
We just get pregnant and hope the odds are actually in our favor this time.
Option 3: Read the End of the Book First
Also called PreImplantation Genetic Determination, or PGD. It's pretty much In Vitro Fertilization, but they pick an egg and sperm that won't give the baby SMA. About $15,000 for the IVF, and an extra $5,000 for the egg/sperm determining. And of course our insurance gives us no coverage for IVF. Also, there is only about a 20-30% chance the embryo will implant...so it could be a total waste of money, time, etc.
Option 4: Find a Greener Pasture
Adopt.
Option 5: Phone a Friend
Get a sperm/egg donor, and use only one sperm/egg from us. Ok, so I hope this doesn't offend anyone, but this totally creeped me out. I guess I should be more open to all this, but it is just the idea of the baby being partly one of us and partly some stranger is just really, well, strange. And surely that would involve some IVF.
So what are we supposed to do? The occupational therapist (OT) said something later about maybe getting sperm/egg from a sibling of ours...okay, that was TOTALLY creepy...so the baby would have us as parents but then have a mom/aunt or dad/uncle? How do you explain that to them? I just gave the OT a polite smile and "Hmmm."
Definitely more to think about...seems like we are learning about more every day.
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