Well, C is at school for her last day of classes before spring break. Because her school is year-round, her spring break is three weeks. Which means, for the next three weeks, I can't go to the gym, I can't go grocery shopping without C, and getting work (real work or school work) completed will be more difficult. Yeah, I can't say I'm looking forward to this...
Of course, the positive side to spring break is that I'll have three weeks to play with my little girl. I wish it were in the cards for us to go somewhere and do something new and/or fun, like go to San Francisco and take her to the zoo, but we're just not in a position right now to take any vacations. Besides, I'm treading water with work and school as it is, and I can't afford to be away from my computer or without a steady routine that provides time to devote to work every day.
The Girl Scouts have been out in full force. Fortunately for me, I don't carry cash, so I haven't had the option of buying cookies, even if I wanted to. For a girl with my lack of will power when it comes to sweets, that's a real blessing. ;) Of course, having been a girl scout and District Top Seller for multiple years growing up, I want to support them and help them meet their cookie-selling goals... But not at the risk of my health. So, really, it's best that I'm unable to buy cookies. I think. I hope. Or maybe I'll run out and hit an ATM. ;)
After more than two months, we finally were able to sleep in our bedroom last night. There are a couple of very minor touch-ups that have to be done with wall texture, paint, and adjusting the latch on our door (it no longer catches), but we have a bed back in there, there are no more holes or exposed flooring, and we have full access to the master bedroom and bathroom again. I cannot begin to tell you what a relief that is.
My desktop is currently in a state of disrepair. We were gifted a lovely new desk for me to use, but in moving the computer around, something apparently shook loose. The power supply is dead, and there's a chance the motherboard may be bad, too. We've got an RMA in process on the power supply, so when they finally process and ship that, we'll be able to ascertain whether that's the only problem. If there's something else going on, it may be a while before I have my desktop back. I'm currently using Hubby's old laptop to get my work done, but I don't have access to my photography stuff, my school files, or even my time sheet for the first half of the month. I'm just keeping my fingers crossed that I have a working desktop again soon. This poor little lappy can barely even handle running WoW.
Life is going well. I go see the oral surgeon this afternoon about getting jaw surgery for my TMJ, the prospect of which excites me a great deal. I am SO over my jaw popping and aching all the time! I've got a handful of new friendship prospects from my online search, and I may even meet someone this weekend for a mini-hike and drinks. I'm loving having red/auburn hair now instead of the blonde; I feel SO much more like myself! Overall, no real complaints. As I said, life is going well.
Thursday, March 22, 2012
Wednesday, March 14, 2012
Not Quite Right
Well, it's been about a week since I switched to the lower dose of meds, if my daily pill sorter can be trusted. So far, things are... not quite right.
Today, I feel like my skin is crawling, and I kinda want to just rip it off. I keep thinking about taking a shower, as if that might help. I'll probably give it a try, because, while it may be a stretch, it may have a placebo effect. At the gym today, I got dizzy (par for the course) and had to sit down on the gym floor for over 5 minutes (NOT normal) until my head got right. Even then, I felt nauseated and achy and all around WRONG. I felt like the only thing in the world I could do was crawl into bed and sleep it off.
I was really moody the first few days. Poor Hubby had to deal with quite a few temper flare-ups, mostly from my inability to take a joke. It's hard to be carefree and happy when your body feels terrible.
It's difficult to explain, but when your meds aren't right or you're adjusting to a new dose, there's this sort of disconnect between your head and the rest of your body, and things don't feel right in either place. In your head, there's a sensation of being detached from your thoughts, almost as if they're coming from an outside source. I'm not hearing voices or anything that extreme, but I feel like thoughts are handed to me instead of created within my own brain. On top of that, my body feels vaguely like I've got the flu, and my skin feels like it's been glued on top of my body. I feel like I could peel it off.
Emotionally, I'm doing alright. My moods have leveled back out again, although I'm experiencing some increased rates of anxiety (the reason my dose was up so high in the first place), and it can get a little emotional when you feel like your body's just OFF. So I cry a little. No big sobfests, but tears of frustration that I have to feel lousy and there's nothing I can do except wait for my body to adjust to the new levels of medication in my system.
In other news, I've set out on a mission to make some new, local friends. There's a website that's intended to be used as a dating site but has an option to select for just friends, too. I've met some really cool people on there in the past, so I started up a profile again and have started putting out feelers. I actually had plans to meet this really cool chick for drinks this evening, but something came up and she asked to postpone. Maybe she found my blog and realized I'm secretly crazy and got scared away. ;) In any event, I've met a couple of interesting people, mostly local. I'm having to be careful because there are far more guys on there than girls, and the hubby's not too interested in me making new guy friends, so I'm trying to be polite but distant with the men while sorting through the women and looking for those who have shared interests and/or interesting hobbies. I have GOT to get a social life! Our last local friends moved (ironically to the city where my parents live, so at least I'll still be seeing them a few times a year) on Saturday, and we didn't see THEM nearly often enough... I need to befriend someone who has a social circle so I can branch out and have people to see movies with, to go to dinner with, to go see local bands with, and maybe someone who doesn't work in the mornings who would like to get brunch once in a while while C is in school. My social life has been on the back burner for years now, and I think it's contributed a great deal to the troubles I've had. I can't keep waiting for my girlfriends in OK to suddenly decide they want to move to Reno or for us to get magically summoned back by some unforeseen job offer in Norman. We've settled in here; we bought a house here; I'm starting a career here... It's time to make it official and MAKE SOME FRIENDS HERE.
Today, I feel like my skin is crawling, and I kinda want to just rip it off. I keep thinking about taking a shower, as if that might help. I'll probably give it a try, because, while it may be a stretch, it may have a placebo effect. At the gym today, I got dizzy (par for the course) and had to sit down on the gym floor for over 5 minutes (NOT normal) until my head got right. Even then, I felt nauseated and achy and all around WRONG. I felt like the only thing in the world I could do was crawl into bed and sleep it off.
I was really moody the first few days. Poor Hubby had to deal with quite a few temper flare-ups, mostly from my inability to take a joke. It's hard to be carefree and happy when your body feels terrible.
It's difficult to explain, but when your meds aren't right or you're adjusting to a new dose, there's this sort of disconnect between your head and the rest of your body, and things don't feel right in either place. In your head, there's a sensation of being detached from your thoughts, almost as if they're coming from an outside source. I'm not hearing voices or anything that extreme, but I feel like thoughts are handed to me instead of created within my own brain. On top of that, my body feels vaguely like I've got the flu, and my skin feels like it's been glued on top of my body. I feel like I could peel it off.
Emotionally, I'm doing alright. My moods have leveled back out again, although I'm experiencing some increased rates of anxiety (the reason my dose was up so high in the first place), and it can get a little emotional when you feel like your body's just OFF. So I cry a little. No big sobfests, but tears of frustration that I have to feel lousy and there's nothing I can do except wait for my body to adjust to the new levels of medication in my system.
In other news, I've set out on a mission to make some new, local friends. There's a website that's intended to be used as a dating site but has an option to select for just friends, too. I've met some really cool people on there in the past, so I started up a profile again and have started putting out feelers. I actually had plans to meet this really cool chick for drinks this evening, but something came up and she asked to postpone. Maybe she found my blog and realized I'm secretly crazy and got scared away. ;) In any event, I've met a couple of interesting people, mostly local. I'm having to be careful because there are far more guys on there than girls, and the hubby's not too interested in me making new guy friends, so I'm trying to be polite but distant with the men while sorting through the women and looking for those who have shared interests and/or interesting hobbies. I have GOT to get a social life! Our last local friends moved (ironically to the city where my parents live, so at least I'll still be seeing them a few times a year) on Saturday, and we didn't see THEM nearly often enough... I need to befriend someone who has a social circle so I can branch out and have people to see movies with, to go to dinner with, to go see local bands with, and maybe someone who doesn't work in the mornings who would like to get brunch once in a while while C is in school. My social life has been on the back burner for years now, and I think it's contributed a great deal to the troubles I've had. I can't keep waiting for my girlfriends in OK to suddenly decide they want to move to Reno or for us to get magically summoned back by some unforeseen job offer in Norman. We've settled in here; we bought a house here; I'm starting a career here... It's time to make it official and MAKE SOME FRIENDS HERE.
Monday, March 12, 2012
How We Met
When I was 14, I was an unhappy, introverted, nerdy little girl who had no real friends and was convinced she was happier that way. Then I took the SATs as part of Duke TIP, and I scored really well, so I was invited to all these summer academic programs. My parents decided it would be best if I went to one, that maybe I'd find a sense of belonging among other academically-minded kids my age. I fought tooth and nail, but at least they let me pick the course, so I picked a Shakespeare class and went to Natchitoches, Louisiana for 3 weeks of studies.
I had the time of my life! I met some of the greatest people who have ever entered my life, and I developed a shy girl's from-a-great-distance crush on the most popular boy at nerd camp.
The next summer, I couldn't WAIT to go back. I was incredibly excited because this summer, they were offering a course in Musical Theatre, which sounded like a blast. I nervously prepared my audition tape, was thrilled when I was accepted into the class, and showed up for my first day of class. We watched Into The Woods, then began preparations for auditions for roles. I was ecstatic when I was cast as The Baker's Wife, the role I wanted, and wasn't exactly upset when my secret crush, who was also in the class, was cast to play my husband, The Baker.
And so, at 15, a professor for a summer course married me to the cutest, most brilliant, most amazing man in the world. A few years later, when I was moving into my dorm for my freshman year of college, my husband, who just happened to be one of my RAs, showed up and helped me move my stuff. He had seen my name on his list of residents and rushed over.
For years, we were just friends. One of us was always in a relationship when the other was single. Suddenly, in 2006, I found myself single while he was, so I invited him out for a night of dancing with my friends. That night, I proposed to him. He didn't exactly give me the answer I was hoping for (his exact words were, "I'd rather date you first"), but it was good enough. We were engaged within days and married in no time at all.
Growing up, he was the guy to whom I compared every other guy. "He's cute, but not as smart as..." "He's smart, but not as kind as..." "He's kind, but not as cute as..." Seriously, this man was my ideal man, and I always knew it on some level. He was the first man (at 15) that I ever told I loved, and I guess I just never stopped. It took us 8 years to get together, but we managed to find our way into each other's lives for good.
I married the man of my dreams, my first love, the man who played my husband in the very first musical I was in. Every day, I am grateful that my parents forced me to spend that first summer at nerd camp, that I went back, that we were cast as husband and wife, and that we later cast ourselves as husband and wife. Sometimes, life really is like a musical, complete with happily ever afters.
I had the time of my life! I met some of the greatest people who have ever entered my life, and I developed a shy girl's from-a-great-distance crush on the most popular boy at nerd camp.
The next summer, I couldn't WAIT to go back. I was incredibly excited because this summer, they were offering a course in Musical Theatre, which sounded like a blast. I nervously prepared my audition tape, was thrilled when I was accepted into the class, and showed up for my first day of class. We watched Into The Woods, then began preparations for auditions for roles. I was ecstatic when I was cast as The Baker's Wife, the role I wanted, and wasn't exactly upset when my secret crush, who was also in the class, was cast to play my husband, The Baker.
And so, at 15, a professor for a summer course married me to the cutest, most brilliant, most amazing man in the world. A few years later, when I was moving into my dorm for my freshman year of college, my husband, who just happened to be one of my RAs, showed up and helped me move my stuff. He had seen my name on his list of residents and rushed over.
For years, we were just friends. One of us was always in a relationship when the other was single. Suddenly, in 2006, I found myself single while he was, so I invited him out for a night of dancing with my friends. That night, I proposed to him. He didn't exactly give me the answer I was hoping for (his exact words were, "I'd rather date you first"), but it was good enough. We were engaged within days and married in no time at all.
Growing up, he was the guy to whom I compared every other guy. "He's cute, but not as smart as..." "He's smart, but not as kind as..." "He's kind, but not as cute as..." Seriously, this man was my ideal man, and I always knew it on some level. He was the first man (at 15) that I ever told I loved, and I guess I just never stopped. It took us 8 years to get together, but we managed to find our way into each other's lives for good.
I married the man of my dreams, my first love, the man who played my husband in the very first musical I was in. Every day, I am grateful that my parents forced me to spend that first summer at nerd camp, that I went back, that we were cast as husband and wife, and that we later cast ourselves as husband and wife. Sometimes, life really is like a musical, complete with happily ever afters.
Thursday, March 8, 2012
Side Effects and Withdrawals
Over the past several months, my medications have kept my moods stable. I have felt myself collected, on firm and steady ground, without any major mood swings or breakthrough episodes of mania or depression. Things have been good. However, a disturbing side effect began to rear its head some months ago, and, recently, it has become so severe that I've had to adjust the dosage of my meds. That side effect? Narcolepsy.
Okay, maybe I'm exaggerating a little. I don't know the clinical diagnostic criteria for narcolepsy, nor have I been diagnosed as having such. All I know is, I'll be fine, and then I can't keep my eyes open. Like, literally CANNOT keep them open. It doesn't matter if I'm standing, sitting, working, relaxing, carrying C, or even DRIVING (this is what gets so scary). I have become addicted to caffeine again in my attempts to overcome the overwhelming fatigue that hits suddenly and quickly makes me comatose. Even large doses of caffeine only dull the effects. I have fallen asleep in classes, and I have fallen asleep numerous times behind the wheel before I could get safely pulled over.
So, in an effort to protect not only myself but all the other good people who might be on the roads I drive, we have decreased the dosage of my primary mood stabilizer, Geodon. It's been about three days since I started the new dose, and last night, it hit me HARD. I take my pills at bedtime so any drowsiness will be put to good use as I settle in for the night, but at medication time, I started getting sweaty and shaky. My heart was racing, I couldn't catch my breath, and my thoughts went into a tailspin. I swear, I was hearing myself think at a hundred words a second, and none of it was in English. (I'm not claiming it was in any real language, mind you--I don't think I secretly know any other languages, nor do I believe it was any form of speaking in tongues, but the words that I was thinking--VERY LOUDLY--were definitely NOT English words.) My stomach ached, and I was on the verge of tears. I felt like I was dying. Every instinct in my body was screaming at me to go take another Geodon to increase the amount in my system, to combat the withdrawals. Of course, while trying to decrease a dose, taking extra medication doesn't do any good. Besides, there was no way to take a pill and get anything other than MORE than my previous dose, and who knows what effect that might have? For about an hour, while I waited for the evening's pills to kick in, I sat in bed and wished that I would die. Then, as suddenly as it started, the symptoms vanished, and I was able to enjoy a little television with the hubby before I rolled over to go to sleep.
We're not sure how effective this lower dose will be at controlling my moods. We're also not entirely sure that decreasing the dose will stop the frightening narcolepsy-like side effects. If the lower dose doesn't work, for whatever reason, I will have to change medications and begin again the arduous task of finding the right dose of the right medication. That means months of trial and error, of feeling like I'm walking a tightrope over a pit of bleak insanity, of struggling just to get through my day-to-day tasks. It's not something I want to go through again. Ever. It's a miserable process, to be sure. I'm hoping that, after these first few weeks of adjusting to the new dose, I'll be able to control my moods without falling asleep at inopportune times, and the withdrawal symptoms will cease. In the mean time, I am fortunate to have a strong and understanding husband to support me, to hold me, and to reassure me that these feelings will pass, and I'm not going to die.
To anyone who thinks that living with bipolar disorder is easy, let me assure you, it is not. Then again, living without bipolar disorder probably isn't so easy, either. We're all in this together.
Edit: It's only fair of me to point out the one positive side effect of this change in my medication: My appetite has decreased remarkably. I'm forgetting to eat, which means I'm not overeating for a change, which is always a good thing. We'll see how long THAT lasts, though. ;)
Okay, maybe I'm exaggerating a little. I don't know the clinical diagnostic criteria for narcolepsy, nor have I been diagnosed as having such. All I know is, I'll be fine, and then I can't keep my eyes open. Like, literally CANNOT keep them open. It doesn't matter if I'm standing, sitting, working, relaxing, carrying C, or even DRIVING (this is what gets so scary). I have become addicted to caffeine again in my attempts to overcome the overwhelming fatigue that hits suddenly and quickly makes me comatose. Even large doses of caffeine only dull the effects. I have fallen asleep in classes, and I have fallen asleep numerous times behind the wheel before I could get safely pulled over.
So, in an effort to protect not only myself but all the other good people who might be on the roads I drive, we have decreased the dosage of my primary mood stabilizer, Geodon. It's been about three days since I started the new dose, and last night, it hit me HARD. I take my pills at bedtime so any drowsiness will be put to good use as I settle in for the night, but at medication time, I started getting sweaty and shaky. My heart was racing, I couldn't catch my breath, and my thoughts went into a tailspin. I swear, I was hearing myself think at a hundred words a second, and none of it was in English. (I'm not claiming it was in any real language, mind you--I don't think I secretly know any other languages, nor do I believe it was any form of speaking in tongues, but the words that I was thinking--VERY LOUDLY--were definitely NOT English words.) My stomach ached, and I was on the verge of tears. I felt like I was dying. Every instinct in my body was screaming at me to go take another Geodon to increase the amount in my system, to combat the withdrawals. Of course, while trying to decrease a dose, taking extra medication doesn't do any good. Besides, there was no way to take a pill and get anything other than MORE than my previous dose, and who knows what effect that might have? For about an hour, while I waited for the evening's pills to kick in, I sat in bed and wished that I would die. Then, as suddenly as it started, the symptoms vanished, and I was able to enjoy a little television with the hubby before I rolled over to go to sleep.
We're not sure how effective this lower dose will be at controlling my moods. We're also not entirely sure that decreasing the dose will stop the frightening narcolepsy-like side effects. If the lower dose doesn't work, for whatever reason, I will have to change medications and begin again the arduous task of finding the right dose of the right medication. That means months of trial and error, of feeling like I'm walking a tightrope over a pit of bleak insanity, of struggling just to get through my day-to-day tasks. It's not something I want to go through again. Ever. It's a miserable process, to be sure. I'm hoping that, after these first few weeks of adjusting to the new dose, I'll be able to control my moods without falling asleep at inopportune times, and the withdrawal symptoms will cease. In the mean time, I am fortunate to have a strong and understanding husband to support me, to hold me, and to reassure me that these feelings will pass, and I'm not going to die.
To anyone who thinks that living with bipolar disorder is easy, let me assure you, it is not. Then again, living without bipolar disorder probably isn't so easy, either. We're all in this together.
Edit: It's only fair of me to point out the one positive side effect of this change in my medication: My appetite has decreased remarkably. I'm forgetting to eat, which means I'm not overeating for a change, which is always a good thing. We'll see how long THAT lasts, though. ;)
Monday, March 5, 2012
Open "Letters"
Dear Insurance Company: I realize you paid for 120mg rx last week, but now I need 80mg. I can't use my old pills to take my new dose. Sorry, it's just not possible. So yeah, you really ARE gonna have to pay for this medication again. I can't help it that my brain requires a different dose and couldn't wait a month to tell me so. So sorry... Except I'm not, because we give you all our money so we can have the pleasure of you constantly denying us coverage and benefits. So screw you. Love, WK
Dear Pharmacy: I appreciate your concern over the cost of my prescription. Yes, $100 *IS* a lot of money for one month's worth of pills. No, I can't go without, so FILL THE PRESCRIPTION I DROPPED OFF INSTEAD OF JUST SETTING IT ASIDE AND TRYING TO TALK ME OUT OF IT. These are psychiatric drugs; you should know better than to play around with those. Love, WK
Dear World: Yes, I know C's wheelchair is really just too adorable for words. No, that's not the reason we went out and got a $3,500 piece of medical equipment. Surprisingly, our daughter looking "cute" isn't worth anywhere near that much money. She's just gonna have to rely on her natural good looks. So yeah, that wheelchair you smile at because it's just so petite and cute? It's NECESSARY. Meaning you have to accommodate it like a real wheelchair, because, oh yeah, it's a REAL WHEELCHAIR. Also, the handicapped placard? They didn't give her that for being cute, either, so quit looking at me like I'm cheating the system when I park my car in a handicapped spot so I can put my daughter in her wheelchair. Love, WK
Dear Me: Stop letting every little, tiny, unimportant little thing get to you. The world really isn't out to get you, and those dirty looks come from people who are too stupid to know what they're glaring at. Concentrate on your husband, your daughter, your amazing parents and brothers and sister-in-law, your academic aspirations, your health, and embracing life. Learn to let the little stuff go. Love, WK
Dear Pharmacy: I appreciate your concern over the cost of my prescription. Yes, $100 *IS* a lot of money for one month's worth of pills. No, I can't go without, so FILL THE PRESCRIPTION I DROPPED OFF INSTEAD OF JUST SETTING IT ASIDE AND TRYING TO TALK ME OUT OF IT. These are psychiatric drugs; you should know better than to play around with those. Love, WK
Dear World: Yes, I know C's wheelchair is really just too adorable for words. No, that's not the reason we went out and got a $3,500 piece of medical equipment. Surprisingly, our daughter looking "cute" isn't worth anywhere near that much money. She's just gonna have to rely on her natural good looks. So yeah, that wheelchair you smile at because it's just so petite and cute? It's NECESSARY. Meaning you have to accommodate it like a real wheelchair, because, oh yeah, it's a REAL WHEELCHAIR. Also, the handicapped placard? They didn't give her that for being cute, either, so quit looking at me like I'm cheating the system when I park my car in a handicapped spot so I can put my daughter in her wheelchair. Love, WK
Dear Me: Stop letting every little, tiny, unimportant little thing get to you. The world really isn't out to get you, and those dirty looks come from people who are too stupid to know what they're glaring at. Concentrate on your husband, your daughter, your amazing parents and brothers and sister-in-law, your academic aspirations, your health, and embracing life. Learn to let the little stuff go. Love, WK
Recognition
Last week, I went to the doctor. Nothing big, just a re-evaluation of my bipolar medication, because my mood stabilizer seems to have had the unexpected side effect of narcolepsy, and I can't afford to keep falling asleep behind the wheel. I wasn't able to get a morning appointment, which meant I had to drag poor C up to Reno with me to wait around in a psychiatric office for an hour.
She kept herself busy in the waiting room by throwing her ball around and chasing it, only to throw it again. After a while, she got bored of that game, and she started to notice the other people in the room.... And their smart phones. THAT got her attention! So then, instead of waiting, I was chasing her down and grabbing her as she tried to steal phone after phone, purse after purse... I was relieved when we got called back to see the doc.
By the time the appointment was over, C was completely stir-crazy, so while I was juggling my copay and scheduling the next follow-up, I put her on the floor, praying she'd stay by me. Of course, that was a ridiculous notion, and the very first thing she did was walk up to the nearest couple, lean in real close, and start pointing at their phone. Fortunately, they were a very nice couple who assured me she wasn't bothering them and that I could leave her there until I finished my business. As I scooped her up to walk out the door, the woman smiled at me and said, "We'll take her!" I laughed and said, "Well, she's quite the handful." Then the woman shocked me. "Our niece has special needs, and she's just so full of love. That's the great thing about these kids; they're full of love and all they want from you is love."
This was the first time a stranger had commented on C's disabilities, aside from noticing her when she was in her wheelchair. This was the first time someone identified her developmental and cognitive disabilities that wasn't a doctor or a teacher, already familiar with her case. Someone recognized her for who she is.
I really thought I'd be devastated when that day came. I thought I'd run home and mourn the loss of the life I had dreamed for my baby, the anonymity she no longer had, the distinction of being "different" that would now follow her around for the rest of her life. Up until now, people had just assumed she was younger than she is and attributed her behavior to her age. Now, they see it. They get it. The jig's up.
Oddly, instead of being heartbroken, I found myself a little bit... relieved. It's hard to explain, but it was like this weight off my shoulders, this sense that I didn't have to protect her image so much anymore, and this relief that I didn't have to explain away her behavior. That she could be who she is, and I wouldn't have to apologize for it. People would see her and understand. At last.
In the grand scheme of things, it was one tiny moment on one insignificant day... But, for me, it was life-changing. It marked the beginning of a new chapter of life, in which we don't try to hide or mask her disabilities anymore, we don't apologize for them or for her behavior, and we can finally fully accept who she is, because the world sees it now, and the world GETS it. My child has special needs; my child has multiple disabilities; my child is an amazing person who overcomes a lot every day. I will never apologize for that again.
She kept herself busy in the waiting room by throwing her ball around and chasing it, only to throw it again. After a while, she got bored of that game, and she started to notice the other people in the room.... And their smart phones. THAT got her attention! So then, instead of waiting, I was chasing her down and grabbing her as she tried to steal phone after phone, purse after purse... I was relieved when we got called back to see the doc.
By the time the appointment was over, C was completely stir-crazy, so while I was juggling my copay and scheduling the next follow-up, I put her on the floor, praying she'd stay by me. Of course, that was a ridiculous notion, and the very first thing she did was walk up to the nearest couple, lean in real close, and start pointing at their phone. Fortunately, they were a very nice couple who assured me she wasn't bothering them and that I could leave her there until I finished my business. As I scooped her up to walk out the door, the woman smiled at me and said, "We'll take her!" I laughed and said, "Well, she's quite the handful." Then the woman shocked me. "Our niece has special needs, and she's just so full of love. That's the great thing about these kids; they're full of love and all they want from you is love."
This was the first time a stranger had commented on C's disabilities, aside from noticing her when she was in her wheelchair. This was the first time someone identified her developmental and cognitive disabilities that wasn't a doctor or a teacher, already familiar with her case. Someone recognized her for who she is.
I really thought I'd be devastated when that day came. I thought I'd run home and mourn the loss of the life I had dreamed for my baby, the anonymity she no longer had, the distinction of being "different" that would now follow her around for the rest of her life. Up until now, people had just assumed she was younger than she is and attributed her behavior to her age. Now, they see it. They get it. The jig's up.
Oddly, instead of being heartbroken, I found myself a little bit... relieved. It's hard to explain, but it was like this weight off my shoulders, this sense that I didn't have to protect her image so much anymore, and this relief that I didn't have to explain away her behavior. That she could be who she is, and I wouldn't have to apologize for it. People would see her and understand. At last.
In the grand scheme of things, it was one tiny moment on one insignificant day... But, for me, it was life-changing. It marked the beginning of a new chapter of life, in which we don't try to hide or mask her disabilities anymore, we don't apologize for them or for her behavior, and we can finally fully accept who she is, because the world sees it now, and the world GETS it. My child has special needs; my child has multiple disabilities; my child is an amazing person who overcomes a lot every day. I will never apologize for that again.
Saturday, March 3, 2012
Rebecca
On this day in 2008, my first niece, Rebecca Lynn, was born.
Eighty days later, before I could hold her hand, she was gone.
It should be noted that her passing was not a surprise. In fact, the real surprise was that she had made it home from the hospital, much less through her first day. She was born with severe abnormalities due to a chromosomal anomaly that made life impossible for her frail body. Her death was a thing of mercy. Nevertheless, it was beyond painful for those of us who loved her.
This is where I point out that the same chromosomal anomaly that made life impossible for my darling Rebecca is the chromosomal anomaly that makes my beloved C the special angel that she is. Yes, the two girls, born just over a month apart, (the two girls I had imagined would grow up together, thick as thieves, favorite cousins), had the same unbalanced translocation. On paper, they look identical. And yet, my daughter lived, and my brother's daughter did not.
When Rebecca passed, C had not yet been diagnosed with any medical conditions. We hadn't even begun to suspect them yet. We certainly didn't know about her chromosomes, as the geneticists had all been crystal clear when they said there was ZERO CHANCE I could be a carrier for the anomaly that affected my brother's children. I remember at her funeral, all I could do was hold her hand and stare into her beautiful little face. A face that shouldn't have been beautiful because of the cleft lip and flattened nose, but that was somehow the most angelic face I had ever seen. I ached for not having been able to fly out to Texas to hold her before she passed. I wept for the loss of the best friend my daughter was never going to know. I hurt for my brother because I had my daughter in my arms, and he had his daughter in a casket.
Earlier today, I was planning what I was going to blog about tonight. My childhood alter-ego, the first time a stranger recognized C's disabilities (Wednesday), my long day of class... And then, on my way home from a night out with friends, I checked my email and saw the birthday email my mom sends out for every member of our very large extended family. A birthday note in remembrance of Rebecca. My Rebecca. My brother's Rebecca. The Rebecca who forever changed my life without breathing a single breath in my presence.
My heart still breaks.
Eighty days later, before I could hold her hand, she was gone.
It should be noted that her passing was not a surprise. In fact, the real surprise was that she had made it home from the hospital, much less through her first day. She was born with severe abnormalities due to a chromosomal anomaly that made life impossible for her frail body. Her death was a thing of mercy. Nevertheless, it was beyond painful for those of us who loved her.
This is where I point out that the same chromosomal anomaly that made life impossible for my darling Rebecca is the chromosomal anomaly that makes my beloved C the special angel that she is. Yes, the two girls, born just over a month apart, (the two girls I had imagined would grow up together, thick as thieves, favorite cousins), had the same unbalanced translocation. On paper, they look identical. And yet, my daughter lived, and my brother's daughter did not.
When Rebecca passed, C had not yet been diagnosed with any medical conditions. We hadn't even begun to suspect them yet. We certainly didn't know about her chromosomes, as the geneticists had all been crystal clear when they said there was ZERO CHANCE I could be a carrier for the anomaly that affected my brother's children. I remember at her funeral, all I could do was hold her hand and stare into her beautiful little face. A face that shouldn't have been beautiful because of the cleft lip and flattened nose, but that was somehow the most angelic face I had ever seen. I ached for not having been able to fly out to Texas to hold her before she passed. I wept for the loss of the best friend my daughter was never going to know. I hurt for my brother because I had my daughter in my arms, and he had his daughter in a casket.
Earlier today, I was planning what I was going to blog about tonight. My childhood alter-ego, the first time a stranger recognized C's disabilities (Wednesday), my long day of class... And then, on my way home from a night out with friends, I checked my email and saw the birthday email my mom sends out for every member of our very large extended family. A birthday note in remembrance of Rebecca. My Rebecca. My brother's Rebecca. The Rebecca who forever changed my life without breathing a single breath in my presence.
My heart still breaks.
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