Ugh. I don't know what to do anymore. I don't even have time to blog. This is where I put my heart's thoughts and it's so distressed right now I don't know if I want to feel for fear of letting lose a demon. I'm getting kicked all over the place right now regarding Scarlett's care. You can join my Facebook page under Scarlett's Syndrome for more information about our battles. That's the space reserved for my head and day to day stuff. I try to keep my head and heart separate. It's the only way to function.
My head is pounding and my heart is racing. I can't understand why this drama keeps happening! Why am I getting support only to have it taken away? And the reason? Because Scarlett is under 19 years old. Yeah, that's right. I wonder how the good ol' people who drafted the Home Support Guide for Children feel about that? They are, after all, the Canadian Healthcare Association so I'm assuming that they know their sh*t. Hey, they wrote the book on it haha!
I am floored. This is wrong. Home Support came to me and now they are telling me I can't have them. Whaaaa?!?!?! All I want is a few hours each day so I can get groceries or spend time with my kids or take a shower or make blended food. It's not like I'm going out with the girls drinking. I get nervous taking my migraine meds because they make me woozy and I can't afford to be off key at any moment with Scarlett.
I need this! Last time I checked, I still lived in Canada. When did a mother have to BEG continuously for help concerning her daughter's care? If I have a break down or my sleep deprivation causes a terrible accident, not only will I be hospitalized but so will my daughter. At a huge expense to my fellow taxpayers. I'm trying to be preventative and maintain and all I'm hearing is no. If I didn't need this I wouldn't be fighting for it. Do I like having excess people in my home? Squashing those magic times or taking peeks into our emotional events? No. Would you? But it's the lesser of the two evils. Privacy equals isolation for Scarlett and myself and a complete breakdown. Personnel in my home take away my private moments but at least it creates stability where there needs to be.
What to do to keep this going? Suggestions? Anyone want to do this for me because I have other things to do like love my kids and keep them going.
Wednesday, March 28, 2012
Thursday, March 15, 2012
I Was Meant for Her
I've always been headstrong. I'm loud, self-righteous, straightforward, and overly analytical. I tell it like it is, even when it's not what you want to hear. I'm pretty strict with my kids (well, what strict is nowadays), I don't like whiners, and will stand up for myself and others no matter the consequences. I've been successful at whatever job I've chose but never quite found my own niche...until Scarlett.
Some of these attributes aren't pretty and I know it. However, they have suited me quite well in this new lifestyle. I won't back down any longer with doctors who want to play it safe or look at me like I'm crazy when I tell them how to do their job. I have learned that the right thing to do isn't comfortable or easy but well worth it. I have even less desire to be around people who can't be happy with the blessings in their lives which, not only do they take for granted, but see things so bleakly.
I was one of those people too. Upon Scarlett's E-vac to BCCH, where I finally received the news I felt in my heart, I took fifteen minutes, went outside and cried for her, and for me. But crying doesn't solve anything and makes your mascara run so I shook it off and chose to be there for my daughter. Yes, chose because there is a choice. I chose to love her come hell or high water. I chose to learn everything about her and how to care for her so I could do it myself. I chose her over the easy road. I chose her over everything else. I chose her.
Now, I don't believe in God or a higher power per say. I mean really, how do I know which one is the right one and there are far too many things that I'd rather believe in that a god who may or may not be real. That being said, I truly believe that I was meant for Scarlett. Yeah, yeah, cart before the horse? Well maybe. With all of my aforementioned attributes how can I not be meant for her? Now, I am comfortable with me. I can be at peace with all my personality traits that I used to see as negative because they are positively the reason why I can do this without looking back, without fear or worry of what comes next if I make a wrong move. And yeah, I do make mistakes. A lot. But don't tell my husband because it took a long time to get him to believe I'm always right!
I still have those moments where I want to break down and cry. But I don't. I have to suck it up or life will spiral out of control and oooooooh, I love control haha. I don't have those "why me?" moments, I know why and I am so thankful that I am Scarlett's mom.
Some of these attributes aren't pretty and I know it. However, they have suited me quite well in this new lifestyle. I won't back down any longer with doctors who want to play it safe or look at me like I'm crazy when I tell them how to do their job. I have learned that the right thing to do isn't comfortable or easy but well worth it. I have even less desire to be around people who can't be happy with the blessings in their lives which, not only do they take for granted, but see things so bleakly.
I was one of those people too. Upon Scarlett's E-vac to BCCH, where I finally received the news I felt in my heart, I took fifteen minutes, went outside and cried for her, and for me. But crying doesn't solve anything and makes your mascara run so I shook it off and chose to be there for my daughter. Yes, chose because there is a choice. I chose to love her come hell or high water. I chose to learn everything about her and how to care for her so I could do it myself. I chose her over the easy road. I chose her over everything else. I chose her.
Now, I don't believe in God or a higher power per say. I mean really, how do I know which one is the right one and there are far too many things that I'd rather believe in that a god who may or may not be real. That being said, I truly believe that I was meant for Scarlett. Yeah, yeah, cart before the horse? Well maybe. With all of my aforementioned attributes how can I not be meant for her? Now, I am comfortable with me. I can be at peace with all my personality traits that I used to see as negative because they are positively the reason why I can do this without looking back, without fear or worry of what comes next if I make a wrong move. And yeah, I do make mistakes. A lot. But don't tell my husband because it took a long time to get him to believe I'm always right!
I still have those moments where I want to break down and cry. But I don't. I have to suck it up or life will spiral out of control and oooooooh, I love control haha. I don't have those "why me?" moments, I know why and I am so thankful that I am Scarlett's mom.
Sunday, March 11, 2012
Understanding
I have been reading posts by other special needs parents and thought I'd write this one with the theme I've been reading. Special need parents have their own set of stresses on top of daily life, fractured relationships, drowning in responsibilities, sorrow and joy. We struggle with the most ordinary things and blossom under the most intense scrutiny.
When you have a special needs child in your life you learn quickly to adapt or you will lose everything. We have to be on top of everything (everything!). The last poop, the last cough, the last seizure, the homework for your "normal" children, dividing up our time as best as we can so all children get a piece of you while you fit in a shower every other day, laundry, and the endless appointments and calls being thrown at you.
I feel like I can never do enough for my three kids. The boys understand that their needs will always come second to Scarlett's because her needs are greater (with the exception of nose bleeds and broken bones). I don't get to do what I would like with them. I don't have the time or the energy. I want them to feel special too and I don't want them ever resenting Scarlett for "taking them away from me". It's quite a dance everyday.
And my husband? Who's he? We rarely spend time together and when we actually get a moment to be in the same room at the same time, we're playing speed catch up on our lives while juggling Scarlett. We have offers for babysitting so we can go out and spend some time alone but, damn, we're too tired for that. And every time we're away we're hoping that we come back and everyone's happy, the sitter still has her hair, and everyone is still alive.
We have the most rigid and yet flexible routine. Scarlett must be fed every 4 hours during the day which means I have a 3.5 hour window from one feeding to the next. I make her tube food and that takes time. I have to plan my shopping trips around what is on sale and what is the best for her because Scarlett gets only the best of food and that gets pricey. We have to clean her bag and tubes for the next use and hold her during her feedings. That means that I cannot do anything for a half hour. I sit. I play. I sing songs and lull her to sleep if she needs it. My sons know I'm busy (and have figured out that I WILL reprimand them if they act out during this time, oh yeah, they've learned not to think I'm going to allow misbehavior just because I can't move at the moment). I also have to allow for doctor appointments or emergency bum wipes during the feeding times, which bump all of her feeds back (which messes with her night drug doses). I cannot just get up and go anymore. There's the wheelchair, the feed pump & bags & syringe, there's the naps (even if they are brief), the boys' schedules, my need for a freaking shower.....and of course phone calls from everybody "important" which I've been waiting for and can't just call them back.
Scarlett is unique. We have no one to compare her with. She wasn't supposed to live to see her first birthday and every day we don't know if she'll be her by night fall. She's a paradox of life and death. Do I plan for the future? How far ahead?
I already lost the daughter I thought I gave birth to. The sweet girl I have now is not the child I thought I'd have. The picture of her in my head, running on sunny grass through a sprinkler, laughing with her brothers will never happen. Helping her get her driver license and shopping together just aren't going to happen. She will never marry. She has taught me so many things that I never would have learned if she wasn't disabled. There are so many more joys in our day over the little things she can do because they are big things in our eyes. She can smile, she can mimic, she can initiate play, and she just started to grab at toys. Everyone revels in her small moments because we all know that tomorrow might not come for her.
But it might. And if tomorrow comes and Scarlett is still here then I need to have everything in place: the care, the food, the patience....no easy feat. And after tomorrow is another day, and again. So I need to be ready for her increasing needs for then too. And that's the hardest part. Being ready to let her go but prepared to keep her going until......?
Now, before I go on, please read this correctly. I am not trying to minimize what anyone else goes through in this "lifestyle". I live in a world where parents see their children go long before they want to, sometimes to horrible, painful reasons. It's our new normal. However, and here I go, I wish I knew if Scarlett had a "lifespan" of such. If I knew she was going to die in a year, or 4 or 10, then I could make plans for that future and no further. If I'm preparing for her to be 40 years old and she dies at 3, well, it's like I'm losing her all over again. But if I know, within reason, Scarlett won't be here around age 5 then I won't have those "re-constructed" images in my head to lose again. Instead of watching her run through the grass, my mind shifts to her enjoying the breeze in her wheelchair while blissfully listening to her brothers play. Instead of teaching her how to drive, she learns to say her name at 15. I don't know if I can lose my now Scarlett's future for the second time. And so I wish for knowing because the uncertainty is worse. Making a new future, perhaps. Life's a paradox...see what I mean?
Being in this situation I've really learned who loves me, well loves Scarlett anyway. People who say they are there for you but aren't when you call them, who don't really want to know about your day, you know the people who tell other people about you but get all the facts wrong because they weren't really listening...I don't have time for them. It's the people who say nothing to you but show up and tell you to sit your ass down so you can eat hot food while they watch your kids, the ones who hear your "I'm ok, really" and call bullshit. Who aren't scared to fight with you (gasp..who fights with a mom of a dying kid?!?!) because you're someone they care about and they know you need to be treated normal ~no kid gloves! Those are the people you want in your life. Yeah, not everyone can handle it, sure whatever, but I don't have a choice because my love of Scarlett circumvents any sane choices. It's nice to know that, even though I'm isolated in a world that most will never-ever understand, there are people who make a break through it and don't expect anything for it.
When you have a special needs child in your life you learn quickly to adapt or you will lose everything. We have to be on top of everything (everything!). The last poop, the last cough, the last seizure, the homework for your "normal" children, dividing up our time as best as we can so all children get a piece of you while you fit in a shower every other day, laundry, and the endless appointments and calls being thrown at you.
I feel like I can never do enough for my three kids. The boys understand that their needs will always come second to Scarlett's because her needs are greater (with the exception of nose bleeds and broken bones). I don't get to do what I would like with them. I don't have the time or the energy. I want them to feel special too and I don't want them ever resenting Scarlett for "taking them away from me". It's quite a dance everyday.
And my husband? Who's he? We rarely spend time together and when we actually get a moment to be in the same room at the same time, we're playing speed catch up on our lives while juggling Scarlett. We have offers for babysitting so we can go out and spend some time alone but, damn, we're too tired for that. And every time we're away we're hoping that we come back and everyone's happy, the sitter still has her hair, and everyone is still alive.
We have the most rigid and yet flexible routine. Scarlett must be fed every 4 hours during the day which means I have a 3.5 hour window from one feeding to the next. I make her tube food and that takes time. I have to plan my shopping trips around what is on sale and what is the best for her because Scarlett gets only the best of food and that gets pricey. We have to clean her bag and tubes for the next use and hold her during her feedings. That means that I cannot do anything for a half hour. I sit. I play. I sing songs and lull her to sleep if she needs it. My sons know I'm busy (and have figured out that I WILL reprimand them if they act out during this time, oh yeah, they've learned not to think I'm going to allow misbehavior just because I can't move at the moment). I also have to allow for doctor appointments or emergency bum wipes during the feeding times, which bump all of her feeds back (which messes with her night drug doses). I cannot just get up and go anymore. There's the wheelchair, the feed pump & bags & syringe, there's the naps (even if they are brief), the boys' schedules, my need for a freaking shower.....and of course phone calls from everybody "important" which I've been waiting for and can't just call them back.
Scarlett is unique. We have no one to compare her with. She wasn't supposed to live to see her first birthday and every day we don't know if she'll be her by night fall. She's a paradox of life and death. Do I plan for the future? How far ahead?
I already lost the daughter I thought I gave birth to. The sweet girl I have now is not the child I thought I'd have. The picture of her in my head, running on sunny grass through a sprinkler, laughing with her brothers will never happen. Helping her get her driver license and shopping together just aren't going to happen. She will never marry. She has taught me so many things that I never would have learned if she wasn't disabled. There are so many more joys in our day over the little things she can do because they are big things in our eyes. She can smile, she can mimic, she can initiate play, and she just started to grab at toys. Everyone revels in her small moments because we all know that tomorrow might not come for her.
But it might. And if tomorrow comes and Scarlett is still here then I need to have everything in place: the care, the food, the patience....no easy feat. And after tomorrow is another day, and again. So I need to be ready for her increasing needs for then too. And that's the hardest part. Being ready to let her go but prepared to keep her going until......?
Now, before I go on, please read this correctly. I am not trying to minimize what anyone else goes through in this "lifestyle". I live in a world where parents see their children go long before they want to, sometimes to horrible, painful reasons. It's our new normal. However, and here I go, I wish I knew if Scarlett had a "lifespan" of such. If I knew she was going to die in a year, or 4 or 10, then I could make plans for that future and no further. If I'm preparing for her to be 40 years old and she dies at 3, well, it's like I'm losing her all over again. But if I know, within reason, Scarlett won't be here around age 5 then I won't have those "re-constructed" images in my head to lose again. Instead of watching her run through the grass, my mind shifts to her enjoying the breeze in her wheelchair while blissfully listening to her brothers play. Instead of teaching her how to drive, she learns to say her name at 15. I don't know if I can lose my now Scarlett's future for the second time. And so I wish for knowing because the uncertainty is worse. Making a new future, perhaps. Life's a paradox...see what I mean?
Being in this situation I've really learned who loves me, well loves Scarlett anyway. People who say they are there for you but aren't when you call them, who don't really want to know about your day, you know the people who tell other people about you but get all the facts wrong because they weren't really listening...I don't have time for them. It's the people who say nothing to you but show up and tell you to sit your ass down so you can eat hot food while they watch your kids, the ones who hear your "I'm ok, really" and call bullshit. Who aren't scared to fight with you (gasp..who fights with a mom of a dying kid?!?!) because you're someone they care about and they know you need to be treated normal ~no kid gloves! Those are the people you want in your life. Yeah, not everyone can handle it, sure whatever, but I don't have a choice because my love of Scarlett circumvents any sane choices. It's nice to know that, even though I'm isolated in a world that most will never-ever understand, there are people who make a break through it and don't expect anything for it.
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