Having a special needs child makes even the most mundane conversations a little bit more complicated.
I go out and about with Andi Jane and Oliver a lot. We really don’t do well stuck at home all day long. So while we are out and about I run into other moms and I am a talker. I tend to chat it up with a new mom every time I step out of the house. I enjoy meeting other people and feel like I am making up for all those years of being a bit nerdy and stuck in a friend rut with the same friends forever (whom all I still love J).
But it is never uncomplicated. I will start talking about their kids and they’ll ask about mine. They ask if they are my only two and then things get complicated. I can either be very evasive which I tend to do, but for some reasons the questions never stop at just how old is your oldest. Then they have to ask how helpful she is with her younger siblings. Or about how I like 2nd grade homework. Or my child goes to that school, who’s your daughter’s teacher? I don’t like to play poor me and tell strangers all about Lily. Honestly I kind of like it when the conversation stops at telling them her age and name. In their mind I have a 2nd grader named Lily whom they assume plays sports and brings home homework. I shouldn’t even have to explain that I am not ashamed of Lily. Not one bit. But sometimes pretending to be “normal” is so much easier. Whenever I have to say, well she’s in special ed. She’s special needs. She’s in a wheelchair. Then the conversation makes a u turn. I get pity sometimes. Sometimes I get unnecessary kudos. The mom starts to feel like we are on different playing fields and we aren’t. The mom isn’t doing anything wrong, it is just a reaction that happens and it changes me in their eyes.
I appear to become super mom and I am so far from it.
Mothering Lily is so easy. I love her so I do what I need to do. Any other mom would do the same. Hell a lot of them would do it a whole lot better than me.
Sometimes I wonder what kind of mom would I have been if Lily were a sport playing, home work doing 2nd grader, but really I don’t think I would be that different. Maybe I am kidding myself. Maybe I am not. It’s something I will never know. I know Lily made me grow up quickly and that is something that may have not had happened, but I think my genuine character is still here, always has been. I think I have become an updated version of me. Like a Kim 5.0.
This new version likes making new friends and meeting new people. So I guess even if it does cause conversations to get more complicated than I’d like when talking to strangers, I just have to deal. Besides maybe I just need to take that kudos and say thanks.
I mean, why not.
Showing posts with label Lily. Show all posts
Showing posts with label Lily. Show all posts
Sunday, September 06, 2009
Thursday, November 20, 2008
Wash that world right off my shoulders
Lily's pediatrician called to say that we are not carriers of this mutation Lily has! The mutation is on her CDKL5 and we will get a full report in a week or so. I am hoping more info on Lily will be on that report. But for now we are breathing a huge sigh of relief.
I also decided with this news to go ahead with a VBAC (I am doing my best to eliminate the word "try" from my vocab)! My OB is on board and I am so excited at trying this thing all natural. The best thing is they can't induce me, which I don't want to be, but the bad side is if I am a week over and don't go into labor naturally I have to have a c-section. So in about 10 weeks or so I think I will be having a lot of sex (sorry maw), drinking castor oil, rubbing some prime eve oil (or whatever that is called), eating spicy foods and doing a lot of mall walking! And asking you all to send me open up that cervix vibes!
I have never gone into labor naturally (and this is only my 3rd!) and I am excited at the thought! I just really hope I can do it and avoid a c-section.
So that is our news, although I may seem to have some mutations I actually don't. And neither does my husband, which I had my money on. YAY!
I also decided with this news to go ahead with a VBAC (I am doing my best to eliminate the word "try" from my vocab)! My OB is on board and I am so excited at trying this thing all natural. The best thing is they can't induce me, which I don't want to be, but the bad side is if I am a week over and don't go into labor naturally I have to have a c-section. So in about 10 weeks or so I think I will be having a lot of sex (sorry maw), drinking castor oil, rubbing some prime eve oil (or whatever that is called), eating spicy foods and doing a lot of mall walking! And asking you all to send me open up that cervix vibes!
I have never gone into labor naturally (and this is only my 3rd!) and I am excited at the thought! I just really hope I can do it and avoid a c-section.
So that is our news, although I may seem to have some mutations I actually don't. And neither does my husband, which I had my money on. YAY!
Tuesday, October 28, 2008
From Lily's blog (cut and paste)
This is too important to not share on both blogs.... it is very long...
Wow! I got a life changing phone call yesterday. Let me start from the top. About 2 ½ years ago I found out about a test that tests the gene CDKL5 which if that has a mutation it is linked to atypical Rett’s syndrome. We have thought Lily has atypical Rett’s for a long time now. Mother of Rett’s girls think Lily has Rett’s. This mutation is linked with not only atypical Rett’s, but also infantile spasms and an early onset of seizures. Ding ding right? Plus looking at the characteristics of this mutation you’d say that is Lily. I was super excited when I found the information on this and called Lily’s neuro asking him to run this test. I am sure this is on Lily’s site, but I have no time to look for it. Well he basically said we aren’t looking for a diagnosis right now, we are trying to control seizures and we’ll look back into it later. I smiled and said ok, fine. I made an appointment with Lily’s personal, totally interested in my children, Pediatrician and showed him what I found and asked, ok maybe a little begging, if he would rx the script for this test and he said “sure.” Well after two months I was called with the report that there was no mutation on the CDKL5 and again we were at another dead end.
I hadn’t thought anything about this until I got an email asking if Lily had been tested for this just two weeks ago and that had me looking into her records and I found that test that said negative. I still thought though that Lily seems to have this disorder and I called the geneticist that we hadn’t seen in years to have her take another look at Lily and maybe run that test again, we can’t get in until Dec.16th. Then Friday of last week after work I got home and saw a message and it is from the girl’s pediatrician. He says he wants to talk to us about Lil and of course it is 5:30pm when I get that message. I had to sit on needles until 9am Monday to call and see what the heck he wanted. Lily hasn’t been in to see him in quite some time and I just couldn’t imagine what he wanted. So I call at 9am and 9:15am my phone rings. Wow this must be important! Dr. says remember when we ran that test two years ago checking CDKL5? I said “of course” he says “well the University of Chicago re-ran a test on Lily (with that old sample) and it came up positive, not for CDKL5, but for some unknown gene that has yet to be named.” I was in shock. A positive test result? A POSITIVE test result????? “So if it wasn’t positive for the CDKL5, what was it positive for? I don’t get it” and he explained to me that there isn’t a name yet, it is all very new and he described it to me in very simple language. He said imagine they were looking on Val Vista and Lindsey (two parallel road here in town) and they didn’t find anything, then later they went looking and found it on Gilbert rd (another parallel road next to the others in town). I’m still confused, but a positive result means a million things to me. It has been 6 years and 1 month we have been looking for answers, 6 years and 1 month of blood work, 3 spinal taps, 2 muscle biopsies, 1 skin biopsy, 3 different neuros, geneticists, developmental specialists, metabolic specialist and what?! A test I insisted on having ran by Lily’s regular Pediatrician is what is finally leading us to an answer?! Holy freaking crap! I can’t count the nights that I thought, was it Lily’s childbirth experience? Did I take too hot of baths while pregnant? Did I take antibiotics during a bad time? Was it my thyroid meds that caused this? I have thought of everything that I could have done to cause this to her and now I found out, it wasn’t anything I did. Can you imagine the relief that comes with that? I can’t explain it.
Granted they haven’t even named the gene yet, and Lily just so happens to be the first test to test positive, but we are on our way. We will know what this is and we will know fairly soon. We may have to be the pilgrims of this whole thing and that is ok. We can handle it!
But this isn’t without stress and well stress. Pediatrician told me on the phone that our next plan of action is to send them Lily’s blood again, they want to test DNA and RNA on her and they want to check Andrew and myself. Hence where the stress comes in, they want to see if Lily didn’t get this mutation from us. This stems off the X chromosome (?) (I am in way over my head here with all this, I barely could figure out what eye color our imaginary child would have in science with my blue eyed partner, by the way I am blue eyed as well) and so we need to see if first this is from us and if it isn’t from us then I guess they will see how this mutation came of in Lily. I think most of you are following me here. I am 6 months pregnant. I have to sit and wait to see if Andrew and I have any deformities that can cause this to happen to our children. We have been told by specialist by specialist the thought of something as rare as Lily happening again is next to none. And even though I have asked about genetic counseling time and time again we have been told with out Lily having a diagnosis they’d be going in blindly and have no idea what to test for. Fast forward. 6 years later. My blood and Andrew’s blood is on a first class flight to Chicago and we have to sit on nails while we wait for the results. I don’t even know how long tests like this should take. 2 weeks? 4? I know it took 2 months to hear back from the negative results we got 2 years ago. I don’t have 2 months. Well I do, but my heart doesn’t. And if Andrew and I do have some whatever I obviously know if doesn’t mean it will happen again for sure to our baby boy since Andi is as healthy as a horse, but then again if we do what are the odds of two healthy if we have something funky? Sigh.
The best case scenario is we have no mutations and it is all Lily, but then I feel bad that Lily has to be alone in this. I don’t want to wish that upon her, but I just don’t know how I would handle another seizing baby. Seriously.
I do know that God has his hands ALL over this. It is really hard to not believe in such a thing. I mean this is just all falling into place so amazingly. I just have to pray that the best outcome will happen and I ask the same from all of you. Lily is our special girl and we adore our special little one in a billion child, we just want her to be our only special blessing.
I may be a little consumed with this until we get an answer so who knows what I will write about in the meantime.
Prayers please! All the time! Thanks!
Wow! I got a life changing phone call yesterday. Let me start from the top. About 2 ½ years ago I found out about a test that tests the gene CDKL5 which if that has a mutation it is linked to atypical Rett’s syndrome. We have thought Lily has atypical Rett’s for a long time now. Mother of Rett’s girls think Lily has Rett’s. This mutation is linked with not only atypical Rett’s, but also infantile spasms and an early onset of seizures. Ding ding right? Plus looking at the characteristics of this mutation you’d say that is Lily. I was super excited when I found the information on this and called Lily’s neuro asking him to run this test. I am sure this is on Lily’s site, but I have no time to look for it. Well he basically said we aren’t looking for a diagnosis right now, we are trying to control seizures and we’ll look back into it later. I smiled and said ok, fine. I made an appointment with Lily’s personal, totally interested in my children, Pediatrician and showed him what I found and asked, ok maybe a little begging, if he would rx the script for this test and he said “sure.” Well after two months I was called with the report that there was no mutation on the CDKL5 and again we were at another dead end.
I hadn’t thought anything about this until I got an email asking if Lily had been tested for this just two weeks ago and that had me looking into her records and I found that test that said negative. I still thought though that Lily seems to have this disorder and I called the geneticist that we hadn’t seen in years to have her take another look at Lily and maybe run that test again, we can’t get in until Dec.16th. Then Friday of last week after work I got home and saw a message and it is from the girl’s pediatrician. He says he wants to talk to us about Lil and of course it is 5:30pm when I get that message. I had to sit on needles until 9am Monday to call and see what the heck he wanted. Lily hasn’t been in to see him in quite some time and I just couldn’t imagine what he wanted. So I call at 9am and 9:15am my phone rings. Wow this must be important! Dr. says remember when we ran that test two years ago checking CDKL5? I said “of course” he says “well the University of Chicago re-ran a test on Lily (with that old sample) and it came up positive, not for CDKL5, but for some unknown gene that has yet to be named.” I was in shock. A positive test result? A POSITIVE test result????? “So if it wasn’t positive for the CDKL5, what was it positive for? I don’t get it” and he explained to me that there isn’t a name yet, it is all very new and he described it to me in very simple language. He said imagine they were looking on Val Vista and Lindsey (two parallel road here in town) and they didn’t find anything, then later they went looking and found it on Gilbert rd (another parallel road next to the others in town). I’m still confused, but a positive result means a million things to me. It has been 6 years and 1 month we have been looking for answers, 6 years and 1 month of blood work, 3 spinal taps, 2 muscle biopsies, 1 skin biopsy, 3 different neuros, geneticists, developmental specialists, metabolic specialist and what?! A test I insisted on having ran by Lily’s regular Pediatrician is what is finally leading us to an answer?! Holy freaking crap! I can’t count the nights that I thought, was it Lily’s childbirth experience? Did I take too hot of baths while pregnant? Did I take antibiotics during a bad time? Was it my thyroid meds that caused this? I have thought of everything that I could have done to cause this to her and now I found out, it wasn’t anything I did. Can you imagine the relief that comes with that? I can’t explain it.
Granted they haven’t even named the gene yet, and Lily just so happens to be the first test to test positive, but we are on our way. We will know what this is and we will know fairly soon. We may have to be the pilgrims of this whole thing and that is ok. We can handle it!
But this isn’t without stress and well stress. Pediatrician told me on the phone that our next plan of action is to send them Lily’s blood again, they want to test DNA and RNA on her and they want to check Andrew and myself. Hence where the stress comes in, they want to see if Lily didn’t get this mutation from us. This stems off the X chromosome (?) (I am in way over my head here with all this, I barely could figure out what eye color our imaginary child would have in science with my blue eyed partner, by the way I am blue eyed as well) and so we need to see if first this is from us and if it isn’t from us then I guess they will see how this mutation came of in Lily. I think most of you are following me here. I am 6 months pregnant. I have to sit and wait to see if Andrew and I have any deformities that can cause this to happen to our children. We have been told by specialist by specialist the thought of something as rare as Lily happening again is next to none. And even though I have asked about genetic counseling time and time again we have been told with out Lily having a diagnosis they’d be going in blindly and have no idea what to test for. Fast forward. 6 years later. My blood and Andrew’s blood is on a first class flight to Chicago and we have to sit on nails while we wait for the results. I don’t even know how long tests like this should take. 2 weeks? 4? I know it took 2 months to hear back from the negative results we got 2 years ago. I don’t have 2 months. Well I do, but my heart doesn’t. And if Andrew and I do have some whatever I obviously know if doesn’t mean it will happen again for sure to our baby boy since Andi is as healthy as a horse, but then again if we do what are the odds of two healthy if we have something funky? Sigh.
The best case scenario is we have no mutations and it is all Lily, but then I feel bad that Lily has to be alone in this. I don’t want to wish that upon her, but I just don’t know how I would handle another seizing baby. Seriously.
I do know that God has his hands ALL over this. It is really hard to not believe in such a thing. I mean this is just all falling into place so amazingly. I just have to pray that the best outcome will happen and I ask the same from all of you. Lily is our special girl and we adore our special little one in a billion child, we just want her to be our only special blessing.
I may be a little consumed with this until we get an answer so who knows what I will write about in the meantime.
Prayers please! All the time! Thanks!
Thursday, May 01, 2008
MIA for good reason
So Lily bug has the stomach flu bug. I am pretty sure I am not alone when saying that has to be the worst thing a child can get. Add a kid still in diapers and unable and unknowing to vomit in the toilet and it makes it twice as fun. Not to mention all the anti epileptic meds she isn't getting. Sigh. Today though is a much better day.
I kept her home with her having a fever still and not eating well yet. But it is funny, I am feeling rather caged in. I work three days a week. That leaves me four other days in the week that I do not work and I am with the kiddos. Yet we never stay home. Ever. Lily goes to school Thursday mornings and Andi and I am out the door. Usually shopping, or the park. Or shopping. Or shopping. Then we lunch. Yes she is my shopping and lunch date. Have a problem with that?
And the weekends forgetaboutit. Unless we have company coming to town that we have to clean up for, we are out and about all weekend long. Staying home is rarely an option and it is an option that has me crawling in my skin. At least if it were in the 100's we'd go summing, but at a measly upper 80's you won't catch me in the pool unless I am floating face down. I am born and raised Arizona, it is how I am. I am just not a home body. I don't like to be a home body until about 6pm at night. I am a morning person and like to wake up and go. Maybe this stems from childhood and Saturdays we could not do ANYTHING until we had our chores done. Maybe I am rebelling.
Anyway, all I came on to say was to tell you about Andi last night and look what a mess I made. Again, I must plan better.
So last night we got Pei Wei. It was good. Andi is the pickiest kid around and I wonder how she survives. Anyway, the pickiest kid alive ate tons of edamame and hot and sour soup. I guess all along the mac and cheese and hot dogs were just not right for her palate.
Gonna loose again in bunco tonight. Sweet.
I kept her home with her having a fever still and not eating well yet. But it is funny, I am feeling rather caged in. I work three days a week. That leaves me four other days in the week that I do not work and I am with the kiddos. Yet we never stay home. Ever. Lily goes to school Thursday mornings and Andi and I am out the door. Usually shopping, or the park. Or shopping. Or shopping. Then we lunch. Yes she is my shopping and lunch date. Have a problem with that?
And the weekends forgetaboutit. Unless we have company coming to town that we have to clean up for, we are out and about all weekend long. Staying home is rarely an option and it is an option that has me crawling in my skin. At least if it were in the 100's we'd go summing, but at a measly upper 80's you won't catch me in the pool unless I am floating face down. I am born and raised Arizona, it is how I am. I am just not a home body. I don't like to be a home body until about 6pm at night. I am a morning person and like to wake up and go. Maybe this stems from childhood and Saturdays we could not do ANYTHING until we had our chores done. Maybe I am rebelling.
Anyway, all I came on to say was to tell you about Andi last night and look what a mess I made. Again, I must plan better.
So last night we got Pei Wei. It was good. Andi is the pickiest kid around and I wonder how she survives. Anyway, the pickiest kid alive ate tons of edamame and hot and sour soup. I guess all along the mac and cheese and hot dogs were just not right for her palate.
Gonna loose again in bunco tonight. Sweet.
Wednesday, March 19, 2008
Spring Break? For Who?
So with this whole Spring "Break" I am wondering who gets one? Lily is on a modified year round schedule meaning 9 weeks on 2 weeks off. Then 6 weeks off for summer.
Granted yes, not having to find help the entire summer is wonderful, but these breaks are tough.
Don't mind me, usually breaks aren't that bad, but Andi has been sick, sick, sick. And due to the break I scheduled all Lily's appointments while she was on break, so we are just over loaded.
I don't know how I would have managed with out MIL here for a long weekend so I am grateful that Andi has been able to stay home and rest while Lily and I have been running. Today Lily's nurse will be here for 8 hours and I will finally go to work. But Andi, although on the mend still has a 100 degree fever and I can't send her to daycare. Ped will want a chest x-ray since she has had a fever almost a week now, but I know she is getting better and does not have pneumonia.
I have to take her to work with me. Sigh. Work with Andi is a oxy-moron.
Yesterday Lily and I were at the hospital for over 6 hours for this damn study. She had to fast and have her blood drawn and an ECG at 10:30am. It was ten to 11am by the time that was done. Then [insert background] MOM! I JUST THREWED UP AGAIN, clean that up, back to finish my story... where was I, oh yeah..... after that first blood draw and ECG we had an hour to kill. It was beautiful and Lily was starving [insert background] MOM! I NEED YOUR HELP! I NEED YOU TO COME HERE. Ok where was I..... oh yeah we are outside and I am feeding Lily some applesauce and a banana while giving her her morning meds I was not allowed to give her until after that 1st blood draw. That hour goes fairly quick and we are back up there for more blood and another ECG. Can I just say I have the most awesome, patient little girl on the planet. Lily is just reason alone to live, she is my hero. Hungry, poked and with stickies all over here, she just chilled, whined a little, but she too appreciated the 70 degree sunshine. After the 2nd blood draw and ECG we were sent on our way for a 2 hour break and we went to the dreaded cafeteria. Have you pushed a wheelchair, stroller, whatever in a crowded, small cafeteria while trying to manage a tray, trying not to go over $4 which is all the cash you have on you? Not easy right? I got away with a soup, salad and tea. $5! Take debit? Yes. Thank God. Sigh. I brought Lily's lunch, FYI. She was not ignored. We ate, I was cool. Not all bummed like last time. I was a little stressed because Andrew called to say Andi was lethargic and had a 103 fever. I thought we'd end up in the hospital with her after I left this one with Lily [insert back ground] MOM! I NEED YOUR HELP, cough, cough, cough MOM!
Ok... eating in the crowded cafeteria. After my huge lunch [insert eye roll] we go outside and try to relax. In walks two little girls, I'd say maybe 6 and 7, maybe 8. And the younger one was staring. Hard. At Lily. Not looking politely which happens all the time and I expect it. This girl almost tripped while walking and staring. Totally rude. Just sickening. I looked at her first and gave her a fake smile, trying to get her to look away. But she persisted. I ignored her and she finally sat down with her family who thought staring is appropriate.
OMG I have been trying to write this for over an hour and Andi is just totally bugging. She is screaming. Sigh. Now she is on my lap. This is why I blog at work and at nap time.
Ok so annoying girl is eating lunch with her family and then proceeds to FEED PIGEONS! I am like a few feet away from them and what happens when you feed a pigeon or two? Oh about a thousand come down asking for some food to. Have I ever mentioned my dislike for pigeons, peacocks, pelicans, hell anything with wings that flies. It is a strange fear that take over my whole body. I am sitting there acting like it is cool, STARING hard at the nasty flying rats to see which way they are coming. She feeds them so more, dad says no and she throws more chips down. Then some one steps hard and they fly up, right over my head. In a crowd of strangers I scream, my heart is pounding and duck. Ok smile, laugh it off. I'm cool. Then she throws more damn chips down and they all come back. I am pissed by then and get up and fast and loud, give that little girl a look that will haunt her dreams every night and I pushed Lily away.
We go out front and chill for an hour and wait. She gets her blood drawn and one more ECG. We finally get home. Andi is the best I had seen her all week and I breathe a sigh of relief.
Then I watch a wasted two hours of American Idol. What is wrong with those people? Then off to bed.
Sigh. Sorry this sucked so much.
I pray my next post will be from a quiet place. Padded walls would be acceptable.
Granted yes, not having to find help the entire summer is wonderful, but these breaks are tough.
Don't mind me, usually breaks aren't that bad, but Andi has been sick, sick, sick. And due to the break I scheduled all Lily's appointments while she was on break, so we are just over loaded.
I don't know how I would have managed with out MIL here for a long weekend so I am grateful that Andi has been able to stay home and rest while Lily and I have been running. Today Lily's nurse will be here for 8 hours and I will finally go to work. But Andi, although on the mend still has a 100 degree fever and I can't send her to daycare. Ped will want a chest x-ray since she has had a fever almost a week now, but I know she is getting better and does not have pneumonia.
I have to take her to work with me. Sigh. Work with Andi is a oxy-moron.
Yesterday Lily and I were at the hospital for over 6 hours for this damn study. She had to fast and have her blood drawn and an ECG at 10:30am. It was ten to 11am by the time that was done. Then [insert background] MOM! I JUST THREWED UP AGAIN, clean that up, back to finish my story... where was I, oh yeah..... after that first blood draw and ECG we had an hour to kill. It was beautiful and Lily was starving [insert background] MOM! I NEED YOUR HELP! I NEED YOU TO COME HERE. Ok where was I..... oh yeah we are outside and I am feeding Lily some applesauce and a banana while giving her her morning meds I was not allowed to give her until after that 1st blood draw. That hour goes fairly quick and we are back up there for more blood and another ECG. Can I just say I have the most awesome, patient little girl on the planet. Lily is just reason alone to live, she is my hero. Hungry, poked and with stickies all over here, she just chilled, whined a little, but she too appreciated the 70 degree sunshine. After the 2nd blood draw and ECG we were sent on our way for a 2 hour break and we went to the dreaded cafeteria. Have you pushed a wheelchair, stroller, whatever in a crowded, small cafeteria while trying to manage a tray, trying not to go over $4 which is all the cash you have on you? Not easy right? I got away with a soup, salad and tea. $5! Take debit? Yes. Thank God. Sigh. I brought Lily's lunch, FYI. She was not ignored. We ate, I was cool. Not all bummed like last time. I was a little stressed because Andrew called to say Andi was lethargic and had a 103 fever. I thought we'd end up in the hospital with her after I left this one with Lily [insert back ground] MOM! I NEED YOUR HELP, cough, cough, cough MOM!
Ok... eating in the crowded cafeteria. After my huge lunch [insert eye roll] we go outside and try to relax. In walks two little girls, I'd say maybe 6 and 7, maybe 8. And the younger one was staring. Hard. At Lily. Not looking politely which happens all the time and I expect it. This girl almost tripped while walking and staring. Totally rude. Just sickening. I looked at her first and gave her a fake smile, trying to get her to look away. But she persisted. I ignored her and she finally sat down with her family who thought staring is appropriate.
OMG I have been trying to write this for over an hour and Andi is just totally bugging. She is screaming. Sigh. Now she is on my lap. This is why I blog at work and at nap time.
Ok so annoying girl is eating lunch with her family and then proceeds to FEED PIGEONS! I am like a few feet away from them and what happens when you feed a pigeon or two? Oh about a thousand come down asking for some food to. Have I ever mentioned my dislike for pigeons, peacocks, pelicans, hell anything with wings that flies. It is a strange fear that take over my whole body. I am sitting there acting like it is cool, STARING hard at the nasty flying rats to see which way they are coming. She feeds them so more, dad says no and she throws more chips down. Then some one steps hard and they fly up, right over my head. In a crowd of strangers I scream, my heart is pounding and duck. Ok smile, laugh it off. I'm cool. Then she throws more damn chips down and they all come back. I am pissed by then and get up and fast and loud, give that little girl a look that will haunt her dreams every night and I pushed Lily away.
We go out front and chill for an hour and wait. She gets her blood drawn and one more ECG. We finally get home. Andi is the best I had seen her all week and I breathe a sigh of relief.
Then I watch a wasted two hours of American Idol. What is wrong with those people? Then off to bed.
Sigh. Sorry this sucked so much.
I pray my next post will be from a quiet place. Padded walls would be acceptable.
Wednesday, March 05, 2008
What did you say Dr?
So in true fashion to this lovely study Lily is on, we are at the Neuro's office weekly. The past two weeks were pretty quick in and out apt.'s, but yesterday was another long one.
Monday night she sat on the potty for 2 hours, yes two hours, from 6-8pm and we finally got the pee. She had to fast for blood work this time around and was a little crabby and we had to see the neuro this apt.
So we are finally in the room with the study nurse, the neuro, Lily and Andi. It is 2 pm, Lily is hungry, Andi is tired. Lily is in her chair just tooting like I have never heard before. Just farting away, over and over and over. Neuro is trying to explain to me Lily's most recent EEG that I was having questions about and I am turning red with all of Lily's gas. Andi then asks me in the middle of my discussion to blow my nose in a tissue. I quietly do as I continue my discussion with the neuro. He is explaining to me about the lines in the EEG what is normal what is not and Andi screams BLOW YOUR NOSE! I politely told her to step away and pretended to blow one more time. I continue to talk while Lily is still farting. Seriously I have never heard a human fart that much. Andi is still unsatisfied with my nose blowing abilities and at the top of her lungs screams BLOW YOUR NOSE LIKE THIS and she blows her nose loud and hard. I tell her to step away NOW or we will have serious issues. She is pouting, Lily is farting and Neuro is still talking.
I somehow still managed to somewhat follow what he said, something about waves and flats and Lily has lots of seizures and her EEG is abnormal. He left and I could swear I saw his head spinning. I also think he muttered in his polite (and sexy) British accent.... I'm never having any bloody children.
Monday night she sat on the potty for 2 hours, yes two hours, from 6-8pm and we finally got the pee. She had to fast for blood work this time around and was a little crabby and we had to see the neuro this apt.
So we are finally in the room with the study nurse, the neuro, Lily and Andi. It is 2 pm, Lily is hungry, Andi is tired. Lily is in her chair just tooting like I have never heard before. Just farting away, over and over and over. Neuro is trying to explain to me Lily's most recent EEG that I was having questions about and I am turning red with all of Lily's gas. Andi then asks me in the middle of my discussion to blow my nose in a tissue. I quietly do as I continue my discussion with the neuro. He is explaining to me about the lines in the EEG what is normal what is not and Andi screams BLOW YOUR NOSE! I politely told her to step away and pretended to blow one more time. I continue to talk while Lily is still farting. Seriously I have never heard a human fart that much. Andi is still unsatisfied with my nose blowing abilities and at the top of her lungs screams BLOW YOUR NOSE LIKE THIS and she blows her nose loud and hard. I tell her to step away NOW or we will have serious issues. She is pouting, Lily is farting and Neuro is still talking.
I somehow still managed to somewhat follow what he said, something about waves and flats and Lily has lots of seizures and her EEG is abnormal. He left and I could swear I saw his head spinning. I also think he muttered in his polite (and sexy) British accent.... I'm never having any bloody children.
Friday, February 15, 2008
First off I want to say thanks for your kind words. It was nice to read them after I had a bad day. Having a blog it is nice to get things off your chest, but then people read those things you say and it leaves you feeling vulnerable. Embarrassed almost. Just wide open.
It is nice to know that the people reading care. No judging, caring. Maybe you all were just blowing smoke up my ass, but let's be honest we all could use a little smoke up our ass from time to time. It makes you feel better.
So thanks.
V-Day was good. Let me go back to V-Day eve and say I got the pee! I sat Lily's little tall naked butt on the potty training potty in the living room, I had couch pillows surrounding her and I sat down next to her as I filled out the kids valentines for their class mates (when will they do their own???!!), I was giving her a twix bar and milk and she said thank you by peeing. I was elated!
So V-Day, we woke up. I gave Andrew his card and his chocolate $1.99 fish that says "you're a keeper" and he gave me a card and Battle of the Sexes game to play this weekend when we go out of town. That was cute and thoughtful. Andrew got the girls cards and gifts and it was a nice morning.
I decided since Andi wanted to go to her school's party (we usually stay home on Thursdays) I had a morning to kill and since Kibberts has been asking me to come "observe" her work, I went to Jr. High yesterday. Kibberts teaches English and although I have big aspirations to write a book one day, I really don't even know what a pronoun is. I know I don't, I found out of my Nintendo DS Are you Smarter than a 5th Grader? Apparently not. So anyway, I thought I would quietly sit and "observe" but noooo... she tells her class that I am smarter than her and to ask me questions. Most of the kids ignored me, but when she was busy with another student and a kid had a question, she had the nerve to say ask Mrs. N. I am sure I went bright red, my hands were sweating and I said, "What?" He asks me a simple enough question, but almost too simple to where you are thinking, maybe I am wrong. I went with my first instinct and whispered to her, if he gets that wrong, please don't blame him.
So that was fun. I know I would be the worst teacher in the world, but watching her I was impressed. I was impressed my favorite drinking buddy, the girl I call whenever anything happens and she is there, my girl, she is well... an adult. A true freaking adult. Like a teacher. She is called Mrs. and all the kids love her and she is good at what she does. I just had to salute to her even more than I have already been doing. And it is amazing how she can manage to go a whole hour without one f*bomb, that might have been what impressed me the most! You rock!
So after that I ran to Phoenix to drop off the golden pee and met up with Andrew for our V-Day lunch. It was poke you in the eye fabulous.
Then I went shopping for a bit since I was where I am not usually (well alone and able to shop that is) and then got Andi and went home.
I made homemade spaghetti which was good, I had all the ingredients and it was going perfectly until I read the last line. Simmer for 3 hours. Oops. It was still good after a 30 minute simmer.
My parents called and wanted to bring the girls a little something, I told them I had some dinner for them and they got it simmered a lot longer and I am sure it was even better. They came, they ate and when they left my dad "forgot" a $50 on the counter. Sigh... I called him, "you forgot something", "what" he asks, "$50 bucks" I reply. "Oh I did.... you said you wanted to get your toes done" he says. "Oh dad...." I have a rocking dad. He really does rock.
Alright I am off for my follow up on this IUD and I am having him rip the damn thing out and throw it on the freeway. I cannot handle the periods I have on this thing. I bleed like I'm wounded and I am either about to jump off a bridge, or throw someone off one. Not cool. Not cool at all.
Wednesday, February 13, 2008
Where do I begin?
May I start with a loud, large sigh? SIIIIGGGGHHHHHHH........ I am tired. I am butt ass tired. Is that an expression? I am tired physically, emotionally and what other way can you be tired? Spiritually? Ok, add that too.
I really don't know what is wrong with me, I am so down. I swear I am manic. Just Sunday I was jumping up and down singing with the Grammy's and yesterday I was in the bathroom at the hospital choking back tears. Just take off my panties and call me Brittany.
Maybe I am tired because getting up with the puppy nightly is weighing in on me. Maybe it is because Andi didn't nap and she slept from 5:45pm to 4:45am and I was up with her. Maybe it is because I gave up Coke for lent, no not that coke.... the kind you snort. Maybe it is because this damn IUD is making me hemorrhage monthly and I am anemic. Maybe it is because I am having a pity party for myself.
Maybe, Maybe, Maybe.
I needed a urine sample for Lily yesterday before we went to our appointment at the hospital to start this study; finally, I mean really start it with the meds.
You get a urine sample from a 5 year old, 47 lb kid who wears diapers. I couldn't get one at home. She peed all over and around the bag they gave me. I sat her on the little potty an hour the night before and an hour the morning of our appointment. She would not go on it. I got up to grab something and she had a drop seizure and fell off the toilet, she was so sad. I was sad. I put her back on the potty and prayed, "God please, just please let her pee, just a little, please” but no pee. We were running late, so I figured just go and hope they can get it. They wouldn't. I had to. She had to have her blood drawn, an ECG and they told me to sit with her on the potty for 20 minutes and we did. I ran the water; I stroked her hair trying to relax her. I told her repeatedly to go potty. She had no idea what I was saying. I was once again praying, "Please God, just a little pee, PLEASE!" Never any pee. She pees the minute I put her diaper on and I start to cry. I wipe my eyes come out and shake my head. Nope. No pee. Another ECG and they give us 2 hours to get lunch and get pee and take it to the lab. I get another bag and try to put it on right. Putting my 47 lb, 47" daughter on a diaper changer for infants. Then we go sit in the cafeteria. I try to get a tray of food and push her in a busy cafeteria. Not easy. We sit down. I feed her.
I watch an older woman walking with a cane while trying to push her adult mentally and physically challenged son in his wheelchair and I felt a sinking feeling in my stomach. Am I looking at my future? Next I look over at a couple of women huddled together crying, and I quickly look away as I think, I know what they are feeling. I was overwhelmed with sadness. I started having flashbacks of sitting in that cafeteria 3 years ago. I was pregnant and just handed my 2 year old over to let them cut her brain in half. I sat there toying with my food, staring at my food, swallowing the lump in my throat, because I don't cry in public. That date comes and goes and I ignore it. It was one of those days in your life that if you try hard enough you can almost wish it away. Almost. But yesterday sitting there spoon feeding Lily in that very cafeteria in the hospital I handed her over not knowing if I would ever see her alive again, it came back. I washed my thoughts away, fed her quickly and we went outside. We went outside and I pretended the people in scrubs sitting outside eating were Meredith, Izzy and George. I pretended what their conversations were because if I listened to my thoughts I would have broken down. We go to the bathroom and guess who peed, not in the bag? Lily. I know it isn't her fault, but c'mon, seriously? Still no pee sample. So I gave up. I told the lady that I will just bring it in on Thursday. I don't know how I will get it, but I will figure it out. It isn't a skip away either, so this was overly frustrating. I think I just have too much on my plate and it overwhelms me at times. I usually skate though our busy days, but yesterday I was overwhelmed. Probably because I was tired, probably because I was feeling sorry for myself, probably because sometimes life sucks. Most moms of 5 year olds can get a urine sample. Most parents of 5 year olds don't have kids in diapers. I know some do. I know I am not the only person dealing with these struggles, but sometimes I can't be tough. Some days I want to scream. Some days I just want to lock the door and cry in the bathroom at a hospital.
But today is a new day.
Unfortunately I am still crabby. Just ask Andrew who called and asked what I wanted for Valentines Day. I ripped him a new one because I already told him not to waste money, we don't have it right now to waste on chocolate and flowers. I said I told you I want to get some lunch and a card! Oops, I know he meant well, but don't ask me what I want for Valentines Day, if you want to get me something just do it, it isn't my damn birthday, I don't have a valentines day wish list.... please.
Oops. Well tomorrow is a new day.
*Side note*
I have been bugging my bff (snicker) "Kibberts" to make her own blog. She is an English teacher, she is an amazing writer, with an even more amazing story to tell and she finally picked her lazy ass up and did it. You have to check it out, she is fabulous!! I am so excited to share her with you all, but you can't have her. She is my bff.
I really don't know what is wrong with me, I am so down. I swear I am manic. Just Sunday I was jumping up and down singing with the Grammy's and yesterday I was in the bathroom at the hospital choking back tears. Just take off my panties and call me Brittany.
Maybe I am tired because getting up with the puppy nightly is weighing in on me. Maybe it is because Andi didn't nap and she slept from 5:45pm to 4:45am and I was up with her. Maybe it is because I gave up Coke for lent, no not that coke.... the kind you snort. Maybe it is because this damn IUD is making me hemorrhage monthly and I am anemic. Maybe it is because I am having a pity party for myself.
Maybe, Maybe, Maybe.
I needed a urine sample for Lily yesterday before we went to our appointment at the hospital to start this study; finally, I mean really start it with the meds.
You get a urine sample from a 5 year old, 47 lb kid who wears diapers. I couldn't get one at home. She peed all over and around the bag they gave me. I sat her on the little potty an hour the night before and an hour the morning of our appointment. She would not go on it. I got up to grab something and she had a drop seizure and fell off the toilet, she was so sad. I was sad. I put her back on the potty and prayed, "God please, just please let her pee, just a little, please” but no pee. We were running late, so I figured just go and hope they can get it. They wouldn't. I had to. She had to have her blood drawn, an ECG and they told me to sit with her on the potty for 20 minutes and we did. I ran the water; I stroked her hair trying to relax her. I told her repeatedly to go potty. She had no idea what I was saying. I was once again praying, "Please God, just a little pee, PLEASE!" Never any pee. She pees the minute I put her diaper on and I start to cry. I wipe my eyes come out and shake my head. Nope. No pee. Another ECG and they give us 2 hours to get lunch and get pee and take it to the lab. I get another bag and try to put it on right. Putting my 47 lb, 47" daughter on a diaper changer for infants. Then we go sit in the cafeteria. I try to get a tray of food and push her in a busy cafeteria. Not easy. We sit down. I feed her.
I watch an older woman walking with a cane while trying to push her adult mentally and physically challenged son in his wheelchair and I felt a sinking feeling in my stomach. Am I looking at my future? Next I look over at a couple of women huddled together crying, and I quickly look away as I think, I know what they are feeling. I was overwhelmed with sadness. I started having flashbacks of sitting in that cafeteria 3 years ago. I was pregnant and just handed my 2 year old over to let them cut her brain in half. I sat there toying with my food, staring at my food, swallowing the lump in my throat, because I don't cry in public. That date comes and goes and I ignore it. It was one of those days in your life that if you try hard enough you can almost wish it away. Almost. But yesterday sitting there spoon feeding Lily in that very cafeteria in the hospital I handed her over not knowing if I would ever see her alive again, it came back. I washed my thoughts away, fed her quickly and we went outside. We went outside and I pretended the people in scrubs sitting outside eating were Meredith, Izzy and George. I pretended what their conversations were because if I listened to my thoughts I would have broken down. We go to the bathroom and guess who peed, not in the bag? Lily. I know it isn't her fault, but c'mon, seriously? Still no pee sample. So I gave up. I told the lady that I will just bring it in on Thursday. I don't know how I will get it, but I will figure it out. It isn't a skip away either, so this was overly frustrating. I think I just have too much on my plate and it overwhelms me at times. I usually skate though our busy days, but yesterday I was overwhelmed. Probably because I was tired, probably because I was feeling sorry for myself, probably because sometimes life sucks. Most moms of 5 year olds can get a urine sample. Most parents of 5 year olds don't have kids in diapers. I know some do. I know I am not the only person dealing with these struggles, but sometimes I can't be tough. Some days I want to scream. Some days I just want to lock the door and cry in the bathroom at a hospital.
But today is a new day.
Unfortunately I am still crabby. Just ask Andrew who called and asked what I wanted for Valentines Day. I ripped him a new one because I already told him not to waste money, we don't have it right now to waste on chocolate and flowers. I said I told you I want to get some lunch and a card! Oops, I know he meant well, but don't ask me what I want for Valentines Day, if you want to get me something just do it, it isn't my damn birthday, I don't have a valentines day wish list.... please.
Oops. Well tomorrow is a new day.
*Side note*
I have been bugging my bff (snicker) "Kibberts" to make her own blog. She is an English teacher, she is an amazing writer, with an even more amazing story to tell and she finally picked her lazy ass up and did it. You have to check it out, she is fabulous!! I am so excited to share her with you all, but you can't have her. She is my bff.
Thursday, February 07, 2008
Hippotherapy
I know it sounds like something that has to do with hippos or water, but it is actually horse therapy. Lily started it yesterday and the kid was in HEAVEN! It was the most amazing thing! She was laughing, her posture was incredible, she was just so happy! Look at her!
It takes several people to get this thing going so I want to say thanks to the 3 M's who made this possible. And of course thanks Ruby for being so patient with Lily. We will be doing this every Wed. night, weather permitting.
It takes several people to get this thing going so I want to say thanks to the 3 M's who made this possible. And of course thanks Ruby for being so patient with Lily. We will be doing this every Wed. night, weather permitting.
Tuesday, February 05, 2008
Kim's Feeling Randy!!
So after a fun filled Saturday, we went to Salt Lake City Sunday afternoon.
Our flight was on time. Lily was happy. Things were great. Our Phx airport looked like Vegas or LA. So many pretty people, I felt like a sloth. I guess it was the pretty people who were invited to the events, but didn't get THE ticket so they went home on Sunday.
I still swear I saw Joel Madden, but Andrew says I did not.
We show up in SLC to a winter wonderland. The snow was falling, yet it wasn't as cold as Kentucky. It was nice actually. The mountains were gorgeous and Andrew wished we had stayed an extra day to get some snowboarding in.... then we got to learn the politics of Utah and wanted to go right back home.
We rolled up into our hotel at half time. I am not a huge football fan. I like football, but I hate watching it on tv. There are too many commercial breaks. But Super Bowl I like. I like the game and the commercials. I especially like the last quarter of the game. So it is half time, of Super Bowl playing in MY home state. I want to watch the game; Andrew wants to watch the game. We want to see the game. We'd like a beer as well as we watch the game. Is that so wrong? Isn't every other person in the United States of America doing just that? Beer and the game? Well apparently NOT in Utah. Our hotel was empty. Totally deserted! We are starving, we had peanuts in our belly. We go to the restaurant and ask if they have a TV. Nope. Ok let's go to the lounge. Sorry you can't come in here with your daughter? We can't sit at a table, order food and watch the game on your TV? Nope we couldn't. Feeling bad for the laws of their state, Utah ain't messing around with the whole "it takes a village" thing; they offer us the key to the top floors concierge suite were they had a couple crackers, some cheese that had been out since the game started and some Pepsi products.
Ok back to our room. Order room service pay $75 (!) for a grilled cheese, mac and cheese and fettuccini and 4 beers. Finally watched the 4th qtr in our room, and what a 4th qtr that was! It was awesome! Go Giants! I had tears in my eyes watching Peyton clapping for his brother. That was just so sweet! I know I am so full of estrogen.
So finally off to bed after House. Lily was on the pull out sofa and we were in the king bed. Lily was having one of those nights where she'd fall asleep and then wake up screaming. It happened three times so after the third screaming fit, I debated over it and gave it half a klonopin. Bad idea!
Come morning I fed her and bathed her half asleep. We got to the hospital and she was still asleep. We'd wake her and she'd be pissed. She didn't do much for the Dr. but it was a good apt. anyway. We just needed to get "in" with Shriner's and now we are. The Dr. was awesome and the whole place was very nice. She got some x-rays and they showed some curvature on her spine, but she thinks it will improve in therapy and no need for a brace yet. Her hips look great. We got hooked up with a place here to get her new AFO's and SMO's which is totally exciting, knowing here in AZ they'd rather eat off their own arms then give us some new anything. Then they also decided that they would get her a new chair, but that will have to be a one week process and we have to do it once again in SLC. The land of the beautiful, but ultra conservative (is anyone else running in these elections besides Mitt Romney? You'd never know if all you watched was local Utah news) (sorry not judging).
But getting a chair that we actually need, instead of what our state will allow here is worth it.
Getting back the airport was super fun! Listening to Andrew scream at the poor GPS girl is always a hoot. And it was super fun when we got an earlier flight, pre boarded for it and they put Lily's wheelchair in under the plane. We sat down and then the captain came on to tell us and the handful of others who came in from Denver that we had to sit there for 2 hours, b/c AZ was raining and full of "rich people with private jets that took priority", words of the Southwest Pilot, not mine. I didn't see him, but I can pretty much guarantee there was a birdie flashed or at least an eye roll with that statement. We were stuck on a plane that was not moving for 2 hours. Did I mention how crabby Lily was from the previous night’s klonopin dose? I ran off the plane at that news and left Andrew with Lily and snuck on a flight to LA and that is where I am writing from today. Well I did get me a Starbucks. Did I mention my inability to find one in that morning? Then I sat and held my crabby, then sleepy 46 lb daughter for the next 3 hours. What fun. Oh I did get to help the captain with an answer on his crossword puzzle. Super duper! At least I downloaded all the Samantha Who episodes on my Itouch and watched almost all of them. What a great show! I can't wait to see it when it starts back up. When these writers get off their asses and stop complaining. Do they think they are that important to leave so many other people jobless? I bet you I could find 100 new writers who would kill for an opportunity to write for a TV show and they would be just as good and promise not to go all union on us.
OOOHHHHH Kim is in for it today aren't I? First Utah, then Mitt and now Union.......
Our flight was on time. Lily was happy. Things were great. Our Phx airport looked like Vegas or LA. So many pretty people, I felt like a sloth. I guess it was the pretty people who were invited to the events, but didn't get THE ticket so they went home on Sunday.
I still swear I saw Joel Madden, but Andrew says I did not.
We show up in SLC to a winter wonderland. The snow was falling, yet it wasn't as cold as Kentucky. It was nice actually. The mountains were gorgeous and Andrew wished we had stayed an extra day to get some snowboarding in.... then we got to learn the politics of Utah and wanted to go right back home.
We rolled up into our hotel at half time. I am not a huge football fan. I like football, but I hate watching it on tv. There are too many commercial breaks. But Super Bowl I like. I like the game and the commercials. I especially like the last quarter of the game. So it is half time, of Super Bowl playing in MY home state. I want to watch the game; Andrew wants to watch the game. We want to see the game. We'd like a beer as well as we watch the game. Is that so wrong? Isn't every other person in the United States of America doing just that? Beer and the game? Well apparently NOT in Utah. Our hotel was empty. Totally deserted! We are starving, we had peanuts in our belly. We go to the restaurant and ask if they have a TV. Nope. Ok let's go to the lounge. Sorry you can't come in here with your daughter? We can't sit at a table, order food and watch the game on your TV? Nope we couldn't. Feeling bad for the laws of their state, Utah ain't messing around with the whole "it takes a village" thing; they offer us the key to the top floors concierge suite were they had a couple crackers, some cheese that had been out since the game started and some Pepsi products.
Ok back to our room. Order room service pay $75 (!) for a grilled cheese, mac and cheese and fettuccini and 4 beers. Finally watched the 4th qtr in our room, and what a 4th qtr that was! It was awesome! Go Giants! I had tears in my eyes watching Peyton clapping for his brother. That was just so sweet! I know I am so full of estrogen.
So finally off to bed after House. Lily was on the pull out sofa and we were in the king bed. Lily was having one of those nights where she'd fall asleep and then wake up screaming. It happened three times so after the third screaming fit, I debated over it and gave it half a klonopin. Bad idea!
Come morning I fed her and bathed her half asleep. We got to the hospital and she was still asleep. We'd wake her and she'd be pissed. She didn't do much for the Dr. but it was a good apt. anyway. We just needed to get "in" with Shriner's and now we are. The Dr. was awesome and the whole place was very nice. She got some x-rays and they showed some curvature on her spine, but she thinks it will improve in therapy and no need for a brace yet. Her hips look great. We got hooked up with a place here to get her new AFO's and SMO's which is totally exciting, knowing here in AZ they'd rather eat off their own arms then give us some new anything. Then they also decided that they would get her a new chair, but that will have to be a one week process and we have to do it once again in SLC. The land of the beautiful, but ultra conservative (is anyone else running in these elections besides Mitt Romney? You'd never know if all you watched was local Utah news) (sorry not judging).
But getting a chair that we actually need, instead of what our state will allow here is worth it.
Getting back the airport was super fun! Listening to Andrew scream at the poor GPS girl is always a hoot. And it was super fun when we got an earlier flight, pre boarded for it and they put Lily's wheelchair in under the plane. We sat down and then the captain came on to tell us and the handful of others who came in from Denver that we had to sit there for 2 hours, b/c AZ was raining and full of "rich people with private jets that took priority", words of the Southwest Pilot, not mine. I didn't see him, but I can pretty much guarantee there was a birdie flashed or at least an eye roll with that statement. We were stuck on a plane that was not moving for 2 hours. Did I mention how crabby Lily was from the previous night’s klonopin dose? I ran off the plane at that news and left Andrew with Lily and snuck on a flight to LA and that is where I am writing from today. Well I did get me a Starbucks. Did I mention my inability to find one in that morning? Then I sat and held my crabby, then sleepy 46 lb daughter for the next 3 hours. What fun. Oh I did get to help the captain with an answer on his crossword puzzle. Super duper! At least I downloaded all the Samantha Who episodes on my Itouch and watched almost all of them. What a great show! I can't wait to see it when it starts back up. When these writers get off their asses and stop complaining. Do they think they are that important to leave so many other people jobless? I bet you I could find 100 new writers who would kill for an opportunity to write for a TV show and they would be just as good and promise not to go all union on us.
OOOHHHHH Kim is in for it today aren't I? First Utah, then Mitt and now Union.......
Wednesday, January 23, 2008
7 Weird Things About Me
Kelly over at Missing J.T. Snow has tagged me with a me me. I am thinking weird and unique go hand in hand right? Here you go.
#1. I live in Arizona. OK, not so weird for some 6 million of us... but for those of you not 6 million people, Arizona is a pretty unique place to be living. I will explain. Every time I go somewhere in the months of November thru February, sometimes March even, I feel like I am a blessed being. I feel almost how a celebrity must feel as looking upon the "regular folk". I see people shoveling snow. Being stuck in their home for days upon end. I see people's faces freeze in one position. I see how plans are put on hold for a few months. I look at them and say, oh you poor things. That must be so awful. But do I really care? Not really. I know that in a couple days I will be back in 60 degree sunshine. HA!
But with every good thing, you must have a bad and living here happens to be pretty unique come June-September as well. It ain't pretty and living here at that time is almost like a torture plan. Our plans go on hold, like going to the park. Going for a walk. Going to take out the trash.
Being pregnant with a due date of late August was almost like a prisoner who even with a great escape plan you'd have to do it with an added 50 lbs and feet twice the normal size. It isn't pretty.
But we can swim in May (April for non locals), we are only a 5 hour drive from San Diego beaches or Mexico's if you'd rather, and if we do need to see snow, it is a couple hours drive north. We also have 6 professional sports teams. Have I mentioned how beautiful it is?
Maybe I am just weird to have such a love affair with my state. I love Arizona and I would never live anywhere else.
#2. I have a 36" inseam. Tall jeans don't fit. I need extra long. I was beyond ecstatic when I went to The Buckle and the gal helping me said, sorry we only have a 29 XXLong and I said, "You Do?!" I bought them on the spot! So that has to be pretty unique right? A 36" inseam?
#3. I guess being a professional model for 10 years might be a little unique. Not too many people get to do that. Maybe even weirder is that I have a condition where I stand too long I pass out. Isn't it a model's job to stand still? I can't tell you how many times I have passed out while in the middle of shooting.
I once passed out at an opening for a Dana Buchman store, where Dana herself was at. I was standing on a tree stump about 2 feet off the ground and about 12" across, in stilettos. I looked over at the model next to me and I said "I am not feeling well", next thing I know I am on the floor then rushed back into the dressing room and I hear them say, "Dana didn't see anything right?" I was groggy, but thinking, um hello???? I just fell off a tree in stilettos, can I have a coke???
That was just one time, then there were the concrete stairs in NYC, my male counterpart just stood there, didn't even try to catch me.
Oh then on tape somewhere (thank God this was pre youtube) there is me fainting on camera at a Sak's. We were filming for a local show here in AZ and I was in heavy winter wear, I was with several other models, the lights were bright and I got that tunnel vision and ringing in my ears, next thing I knew I took a few steps and face planted on the ground.
These are times I actually fainted, there are countless times I caught myself and had to take a break. A little embarrassing, to say the least.
#4. This is pretty weird. I have had this red thing on the bridge of my nose since I can remember. No Dr. can dx it, no laser can fix it. Actually laser treatments have only pissed it off. A facialist once told me it really hurts my looks. But to me it is just something planted on my face that I am used to and just cover up daily with make up. Although, it really doesn't cover completely, I embrace it.
Here it is in all it's glory (the camera phone is being generous)
#5. I have a daughter that is totally rare and unique. I guess it is pretty different to have a daughter in a wheelchair. Might be even more weird is my best friend's husband has been affected by a brain injury as well. We are quite the pair pushing our loved ones around in wheelchairs. And maybe even topping that off with a brother in a wheelchair. Wheelchairs just follow me around I guess.
#6. I pick my lip. It is a horrible and gross nervous habit. It is beyond a little pick now and then. It is a full fledged problem that needs an intervention.
#7. I can walk with my legs over my shoulders. It is very odd and hard to explain. I used to do it all the time as a kid and recently found out, I can still do it.
And while that was fun I just wanted to add:
Heath Ledger :(
#1. I live in Arizona. OK, not so weird for some 6 million of us... but for those of you not 6 million people, Arizona is a pretty unique place to be living. I will explain. Every time I go somewhere in the months of November thru February, sometimes March even, I feel like I am a blessed being. I feel almost how a celebrity must feel as looking upon the "regular folk". I see people shoveling snow. Being stuck in their home for days upon end. I see people's faces freeze in one position. I see how plans are put on hold for a few months. I look at them and say, oh you poor things. That must be so awful. But do I really care? Not really. I know that in a couple days I will be back in 60 degree sunshine. HA!
But with every good thing, you must have a bad and living here happens to be pretty unique come June-September as well. It ain't pretty and living here at that time is almost like a torture plan. Our plans go on hold, like going to the park. Going for a walk. Going to take out the trash.
Being pregnant with a due date of late August was almost like a prisoner who even with a great escape plan you'd have to do it with an added 50 lbs and feet twice the normal size. It isn't pretty.
But we can swim in May (April for non locals), we are only a 5 hour drive from San Diego beaches or Mexico's if you'd rather, and if we do need to see snow, it is a couple hours drive north. We also have 6 professional sports teams. Have I mentioned how beautiful it is?
Maybe I am just weird to have such a love affair with my state. I love Arizona and I would never live anywhere else.
#2. I have a 36" inseam. Tall jeans don't fit. I need extra long. I was beyond ecstatic when I went to The Buckle and the gal helping me said, sorry we only have a 29 XXLong and I said, "You Do?!" I bought them on the spot! So that has to be pretty unique right? A 36" inseam?
#3. I guess being a professional model for 10 years might be a little unique. Not too many people get to do that. Maybe even weirder is that I have a condition where I stand too long I pass out. Isn't it a model's job to stand still? I can't tell you how many times I have passed out while in the middle of shooting.
I once passed out at an opening for a Dana Buchman store, where Dana herself was at. I was standing on a tree stump about 2 feet off the ground and about 12" across, in stilettos. I looked over at the model next to me and I said "I am not feeling well", next thing I know I am on the floor then rushed back into the dressing room and I hear them say, "Dana didn't see anything right?" I was groggy, but thinking, um hello???? I just fell off a tree in stilettos, can I have a coke???
That was just one time, then there were the concrete stairs in NYC, my male counterpart just stood there, didn't even try to catch me.
Oh then on tape somewhere (thank God this was pre youtube) there is me fainting on camera at a Sak's. We were filming for a local show here in AZ and I was in heavy winter wear, I was with several other models, the lights were bright and I got that tunnel vision and ringing in my ears, next thing I knew I took a few steps and face planted on the ground.
These are times I actually fainted, there are countless times I caught myself and had to take a break. A little embarrassing, to say the least.
#4. This is pretty weird. I have had this red thing on the bridge of my nose since I can remember. No Dr. can dx it, no laser can fix it. Actually laser treatments have only pissed it off. A facialist once told me it really hurts my looks. But to me it is just something planted on my face that I am used to and just cover up daily with make up. Although, it really doesn't cover completely, I embrace it.
Here it is in all it's glory (the camera phone is being generous)
#5. I have a daughter that is totally rare and unique. I guess it is pretty different to have a daughter in a wheelchair. Might be even more weird is my best friend's husband has been affected by a brain injury as well. We are quite the pair pushing our loved ones around in wheelchairs. And maybe even topping that off with a brother in a wheelchair. Wheelchairs just follow me around I guess.
#6. I pick my lip. It is a horrible and gross nervous habit. It is beyond a little pick now and then. It is a full fledged problem that needs an intervention.
#7. I can walk with my legs over my shoulders. It is very odd and hard to explain. I used to do it all the time as a kid and recently found out, I can still do it.
And while that was fun I just wanted to add:
Heath Ledger :(
Wednesday, September 26, 2007
Me, me, me!
So in the temple of Kim, all is well, I guess. I have a follow up appointment to go over my blood work next week, but she sees nothing wrong with me and I am feeling quite hypocondriatic (is that a word, I know spell check doesn't like it). She said if the dizziness does not go away I will need to see a neurologist. I do not need to see a neurologist. I am sure I will be fine.
I forgot to talk about the field trip I went on last week. It was really fun! Really, it was. I went to Lily bugs school on Friday and we walked over to another child's home. We made muffins and Lily's teacher was adamant that every child helped. They had to match each picture with the picture on the talker, for example they had to match the picture of flour with the picture of flour on the talker and help hand over hand with measuring and pouring it in the bowl. It took a long time and the eggs were a bit messy, but it was really fun getting to know all the other kids. It was fun helping Lily bake. She seemed to enjoy it, she especially enjoyed Ms. Amy popping her chocolate chips! This is Lily.... "Oh I can't chew that piece of broccoli Mom, gag, gag".... "oh well this chocolate chip is much easier to chew Mom". Well Lily doesn't really talk, but I know her. She is a drama queen... where that comes from, I do not know. And that is what is going on in her mind.
Anyway, after we made our yummy pumpkin chocolate chip muffins we sat and played with the dogs while the teachers cleaned the kitchen. Then once the place was nice and clean we walked to the park and had a picnic. It was really nice, the weather was nice until the walk back it started getting warm. Lily cried the whole way back and I think she was hot and wanted out of her chair. Right when we got back she got to lie down on the bean bag chair and she was happier than a clam. It really was a fun time.
The kids in her class are all so sweet. And so dang cute! I just loved getting to know them all better. One poor guy was having seizure after seizure and it just broke my heart. He was having ones just like Lily used to and I caught myself getting choked up b/c I know what the stress of those is like on the parents and it is so hard! Not to mention hard on him! It is just so frustrating and unfair. I really hate seizures. I hate them! It wasn't my child, but I hurt for him. He wanted to be a part of the baking and he couldn't. He was too tired. I was so impressed with the teachers aides. I am so glad I got to see how they handle those situations b/c we could have years like that again. We can't take a seizure free day for granted. They treated him with true love and compassion. I could feel their hearts sad for him and they were there for him. I was so relieved to know, if God forbid that is how some days will be for Lily, she is safe and will be comforted.
What amazing hearts these people have. What a job they do. I wanted to stay and work with them. Maybe one day when Andrew makes enough, I can do something like that. Be an aide. Make a difference in these kids lives. They might not think of it that way, but that is what they are doing.
I am so thankful we are in the school we are in. I pray things stay like this for the entire stay at this school. Which will be many years!
I forgot to talk about the field trip I went on last week. It was really fun! Really, it was. I went to Lily bugs school on Friday and we walked over to another child's home. We made muffins and Lily's teacher was adamant that every child helped. They had to match each picture with the picture on the talker, for example they had to match the picture of flour with the picture of flour on the talker and help hand over hand with measuring and pouring it in the bowl. It took a long time and the eggs were a bit messy, but it was really fun getting to know all the other kids. It was fun helping Lily bake. She seemed to enjoy it, she especially enjoyed Ms. Amy popping her chocolate chips! This is Lily.... "Oh I can't chew that piece of broccoli Mom, gag, gag".... "oh well this chocolate chip is much easier to chew Mom". Well Lily doesn't really talk, but I know her. She is a drama queen... where that comes from, I do not know. And that is what is going on in her mind.
Anyway, after we made our yummy pumpkin chocolate chip muffins we sat and played with the dogs while the teachers cleaned the kitchen. Then once the place was nice and clean we walked to the park and had a picnic. It was really nice, the weather was nice until the walk back it started getting warm. Lily cried the whole way back and I think she was hot and wanted out of her chair. Right when we got back she got to lie down on the bean bag chair and she was happier than a clam. It really was a fun time.
The kids in her class are all so sweet. And so dang cute! I just loved getting to know them all better. One poor guy was having seizure after seizure and it just broke my heart. He was having ones just like Lily used to and I caught myself getting choked up b/c I know what the stress of those is like on the parents and it is so hard! Not to mention hard on him! It is just so frustrating and unfair. I really hate seizures. I hate them! It wasn't my child, but I hurt for him. He wanted to be a part of the baking and he couldn't. He was too tired. I was so impressed with the teachers aides. I am so glad I got to see how they handle those situations b/c we could have years like that again. We can't take a seizure free day for granted. They treated him with true love and compassion. I could feel their hearts sad for him and they were there for him. I was so relieved to know, if God forbid that is how some days will be for Lily, she is safe and will be comforted.
What amazing hearts these people have. What a job they do. I wanted to stay and work with them. Maybe one day when Andrew makes enough, I can do something like that. Be an aide. Make a difference in these kids lives. They might not think of it that way, but that is what they are doing.
I am so thankful we are in the school we are in. I pray things stay like this for the entire stay at this school. Which will be many years!
Monday, December 18, 2006
Sending Holiday Cheer
Ok so I know you all think I am just saying this b/c I am co owner of a small retail business but seriously I hate the mall! Seriously!
Since the mall is open at 9am right now since tis the season, I got to shop from 9am to 10:15am kidless, because Lily is in OT and ST and Andi went to daycare, at the mall in Mesa called Fiesta Mall. It is nothing too impressive and not where I go when I choose my location but I was there, it was there I knew I could knock several gifts. Well I had never been so annoyed and frustrated in just one hour, ever! This does not happen when I go to Chandler Fashion Center but man at the mall "the white people used to go to" sure has a lot of annoying kiosiks!
I wasn't in the mall 1 minute before some guy yells to me to come over, I ignore and keep on walking. Then I buy a gift at Bath and Body Works and the cashier has to tell me about the lip gloss for $5 and the robe I can get for $20 with a $25 purchase. "No thanks."
So as I walk out of there I have another lady come over to me and ask if she can "show me something" I say "no".
I head on my mission, I only have an hour. I get a few more gifts with out a hassle and pass yet another person who wants to "show me something for your hair?" and I finally growl, "I am in a hurry!" then I say rather loudly, "maaan!" I was so annoyed.
Reading that back doesn't sound as bad but you have to admit over selling is just wrong. If I order a medium it is to save on calories, not money. If I bring my items to the register, I am finished shopping. Please people, just take it as it is.
Happy Holidays!
My last posting as a young hip mom of 27........
Since the mall is open at 9am right now since tis the season, I got to shop from 9am to 10:15am kidless, because Lily is in OT and ST and Andi went to daycare, at the mall in Mesa called Fiesta Mall. It is nothing too impressive and not where I go when I choose my location but I was there, it was there I knew I could knock several gifts. Well I had never been so annoyed and frustrated in just one hour, ever! This does not happen when I go to Chandler Fashion Center but man at the mall "the white people used to go to" sure has a lot of annoying kiosiks!
I wasn't in the mall 1 minute before some guy yells to me to come over, I ignore and keep on walking. Then I buy a gift at Bath and Body Works and the cashier has to tell me about the lip gloss for $5 and the robe I can get for $20 with a $25 purchase. "No thanks."
So as I walk out of there I have another lady come over to me and ask if she can "show me something" I say "no".
I head on my mission, I only have an hour. I get a few more gifts with out a hassle and pass yet another person who wants to "show me something for your hair?" and I finally growl, "I am in a hurry!" then I say rather loudly, "maaan!" I was so annoyed.
Reading that back doesn't sound as bad but you have to admit over selling is just wrong. If I order a medium it is to save on calories, not money. If I bring my items to the register, I am finished shopping. Please people, just take it as it is.
Happy Holidays!
My last posting as a young hip mom of 27........
Wednesday, December 13, 2006
Did I really just do that???
My little Andi is ELMO obsessed, like seriously, we have to watch Elmo's World in the car everywhere we go and she screams her head off when Mr. Noodle comes on the screen and I have to fast forward to Elmo again. This new T.M.X. Elmo is the gift I would love to get for the girls this year b/c of Andi's obsession and b/c he can be hooked up to a switch and all Lily has to do is hit the switch and he will do whatever it is that he does. So I started my search since Walmart is selling 4,000 of them at noon (est) every day til Friday the 15th so I tried yesterday and today but for some reason I am just not clever enough to pull it off so I said fine I am going to Ebay and paid $66 for one. Not too bad for Ebay but the seller charged $16 for s&h! $16! I am an ebayer, I know how much it is to ship things, and I am pretty sure there won't be a rush on this delivery. Oh well, I am sure Andi will play with it for about 10 minutes and I can really hook any toy up for Lily therefore proving that I am a sucker.
Wednesday, December 06, 2006
Mary did you know.....
I know it has been awhile since my last blog so I will once say it again, I suck at blogging.
I don't know if it is the impending arrival of AF, or all the Christmas music or what it is but I seem to be crying at the drop of a hat these days. Every morning on not my favorite radio station they answer Christmas wishes and I spend the morning bawling as I drive to work, then I say "stupid" every time I wipe a tear.
Last night while driving home from a very lovely "mom's night out" with the mom's from Lily's school who all have a special needs child, and I was listening to Delilah, and of course I started to cry. I was thinking about, not even listening to "Mary did you know".
Now let me back up and tell you all how much I adore Christmas. Always have, always will. I have always felt extra special b/c my birthday is less than a week away from Christmas and I have felt that this is *my* holiday. I love buying gifts, I love finding the perfect gift and watching the person you searched for open it and actually smile. I love receiving gifts as well, I love Christmas music, I love the cool weather (note NOT cold weather, I love an AZ Christmas). I love the lights, I still remember every Christmas Eve we would drive home from my aunt’s house and my dad would take the long route home stopping to look at lights. This was way before the waving Santa’s and head moving reindeers. I still take a detour at night just to see the lights.
I have always been this way but I am just giving some background so you understand my love for all things Christmas but this was before Lily. The first Christmas with Lily was in 2002. Lily was 4 months old, she had been in and out of the hospital her short life, I had just lost my Grandma, and she was still having out of control seizures. We had no idea what to do or expect for her future. We were scared and unsure. I am not saying her changed my disposition on Christmas, I still decorated the house, had a big tree and loved sitting with her and watch her look at the lights, it was the only thing I would see her actually look at. But one night I was holding her and the song "Mary did you know" came on and although I have always loved that song, I never really listened to that song like I did that night. I heard the words and I just started bawling. I felt exactly what they were saying. The song is so powerful if you give it your attention. "Mary did you know that your baby boy has walked where angels trod?" "The child that you delivered will soon deliver you" I mean, WOW, powerful words. I sat there and held Lily, the child that I was so unsure of, the child I had no idea of her future and I thought "Kim, do you know what a blessing you have in your arms?"
Mary had no idea what would happen when she got pregnant, she had no idea what to expect from this child, she didn't know the hurt she will face 30 years down the road. She just knew she loved her child and she would hold him, love him and raise him to the best of her abilities. She had no idea those tiny fingers and toes would heal the sick and fix the broken.
I had no idea that Lily's tiny fingers and toes would touch people all across the world. I just knew that no matter what happens I had to hold her, lover her and raise her to the best of my abilities.
**Mary did you know, that your baby boy would one day walk on water? Mary did you know, that your baby boy would save our sons and daughters?
Did you know, that your baby boy has come to make you new? This Child that you delivered, will soon deliver you!
Mary did you know, that your baby boy will give sight to the blind man? Mary did you know, that your baby boy would calm a storm with His hand?
Did you know, that your baby boy has walked where angels trod and when you kiss your little baby, you've kissed the face of God? Oh, Mary did you know?
Mary did you know?
The blind will see, the deaf will hear, The dead will live again, The lame will leap, the dumb will speak praises of the Lamb?
Mary did you know, that your baby boy is Lord of all creation? Mary did you know, that your baby boy will one day rule the nations?
Did you know, that your baby boy was Heaven's perfect Lamb? And this sleeping Child you're holding is the Great I AM**
I don't know if it is the impending arrival of AF, or all the Christmas music or what it is but I seem to be crying at the drop of a hat these days. Every morning on not my favorite radio station they answer Christmas wishes and I spend the morning bawling as I drive to work, then I say "stupid" every time I wipe a tear.
Last night while driving home from a very lovely "mom's night out" with the mom's from Lily's school who all have a special needs child, and I was listening to Delilah, and of course I started to cry. I was thinking about, not even listening to "Mary did you know".
Now let me back up and tell you all how much I adore Christmas. Always have, always will. I have always felt extra special b/c my birthday is less than a week away from Christmas and I have felt that this is *my* holiday. I love buying gifts, I love finding the perfect gift and watching the person you searched for open it and actually smile. I love receiving gifts as well, I love Christmas music, I love the cool weather (note NOT cold weather, I love an AZ Christmas). I love the lights, I still remember every Christmas Eve we would drive home from my aunt’s house and my dad would take the long route home stopping to look at lights. This was way before the waving Santa’s and head moving reindeers. I still take a detour at night just to see the lights.
I have always been this way but I am just giving some background so you understand my love for all things Christmas but this was before Lily. The first Christmas with Lily was in 2002. Lily was 4 months old, she had been in and out of the hospital her short life, I had just lost my Grandma, and she was still having out of control seizures. We had no idea what to do or expect for her future. We were scared and unsure. I am not saying her changed my disposition on Christmas, I still decorated the house, had a big tree and loved sitting with her and watch her look at the lights, it was the only thing I would see her actually look at. But one night I was holding her and the song "Mary did you know" came on and although I have always loved that song, I never really listened to that song like I did that night. I heard the words and I just started bawling. I felt exactly what they were saying. The song is so powerful if you give it your attention. "Mary did you know that your baby boy has walked where angels trod?" "The child that you delivered will soon deliver you" I mean, WOW, powerful words. I sat there and held Lily, the child that I was so unsure of, the child I had no idea of her future and I thought "Kim, do you know what a blessing you have in your arms?"
Mary had no idea what would happen when she got pregnant, she had no idea what to expect from this child, she didn't know the hurt she will face 30 years down the road. She just knew she loved her child and she would hold him, love him and raise him to the best of her abilities. She had no idea those tiny fingers and toes would heal the sick and fix the broken.
I had no idea that Lily's tiny fingers and toes would touch people all across the world. I just knew that no matter what happens I had to hold her, lover her and raise her to the best of my abilities.
**Mary did you know, that your baby boy would one day walk on water? Mary did you know, that your baby boy would save our sons and daughters?
Did you know, that your baby boy has come to make you new? This Child that you delivered, will soon deliver you!
Mary did you know, that your baby boy will give sight to the blind man? Mary did you know, that your baby boy would calm a storm with His hand?
Did you know, that your baby boy has walked where angels trod and when you kiss your little baby, you've kissed the face of God? Oh, Mary did you know?
Mary did you know?
The blind will see, the deaf will hear, The dead will live again, The lame will leap, the dumb will speak praises of the Lamb?
Mary did you know, that your baby boy is Lord of all creation? Mary did you know, that your baby boy will one day rule the nations?
Did you know, that your baby boy was Heaven's perfect Lamb? And this sleeping Child you're holding is the Great I AM**
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