Fighting the Good Fight?

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. 

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.

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.

Perception is Relative

Perception is relative to our lives. How we see each others and ourselves all depends on how we relate to our surroundings and our internalization of our own worlds. Is it the way we are brought up that influences how we react to situations or is it or our reactions which cause the strife and conflict in our life?

I often hear this phrase "There's always someone who has it worse than you.". This is usually said after some praise for my "strength and courage" because I choose to keep my disabled daughter and fight for everything we get instead of giving up. I have issues with hearing those words being spoken. I do not see how my happiness should be elevated because of someone else's misery. Living my life on that premise is like waiting for someone to die so you can feel more alive.


I also have a problem being put on a different level than everyone else. I am not any different from you. I get crabby, I yell at my kids when I shouldn't, I eat chips and leave dishes in the sink. Either I am deemed a super mom, a hero, a wonderwoman for bringing my kids out to our mommy & me group, cooked meals, no sleep, struggling through sick Scarlett...the list goes on, or I'm excused from all activities because I have "enough going on". Like my friend who's doing a walk for charity who said I was excused from donating because of all things Scarlett. It's not like I'm doing the work, making the walk or asking for money. How does that excuse me from being a decent human being and giving a donation for those who need it? I understand that everyone is trying to help out and make my life easier., but I want to feel as normal as possible and these situations always remind me that I'm just one step outside of the group.

I liken life to baking. Even if you're given the best of ingredients and follow the recipe step by step your cake can still fall flat. If you don't have everything on your list, substitute. Some of the best things are done on the fly and you would have never known how wonderful it could have turned out if you didn't step out of the box. Life is and should be messy. Roll up your sleeves and get creative.

Try to be happy with what you have. not because someone is worse off than you. Maybe life would be more fulfilling if we all strive to make "those worse off than us" better off than us.

My little Strugglett with a NG tube.

On oxygen, nebs, monitors, NG tube. She looks like a fighter pilot!

In her bath chair with a PEG tube.

With her little big brother, Carson.

 Thought I'd post some pictures of Scarlett. She's so damn cute! Looking through her pictures brings me so far back in time. The NG tube was placed in March 2011 because she simply stopped eating. We live in a remote area so I got to learn how to put one in in case it came out. And come out it did! Time and time again. I had to roll her in a blanket, sit on her chest, and ram the tube through her nose down past her gag reflex until it reached her tummy. Sometimes she'd scream ( well do you blame her? it burns!)

New Vitamix Blender. WHOOOO!

In her loaned wheelchair from the CDC (Child Development Center....was there not a better acronym available?) Name aside, these people rock!

 and the tube would come out her throat. *sigh* I'd have to pull it out and start again. Her skin would bleed from the tape placed there to protect it from the tube chaffing her little cheek.

The hospital picture was taken in June  2011. After the NG tube, Scarlett had severe respiratory illness. We went down via ambulance for this trip. That's two hours of sirens *ugh*. We were home for 9 days in June and didn't get home until mid July. I so missed my boys.



Scarlett had a PEG tube placed in her tummy at the end of June 2011 at BCCH. She was so happy to have the NG tube gone! But the Peg has it's draw backs too. The long tube was something she's pull on during bath time and diaper changes and feedings. It did however allow me to start blending real food so she could get all the good stuff we take for granted.







Her brothers are so great with her! I was sick recently and Scarlett was asleep hooked up to her feeding pump. I got a neighbour who doesn't know what to do with her to come over so I could get some subs for the kids' dinner and I put my nine year old in charge of flushing her line and disconnecting her if she were to wake in the 10 minutes I was gone. Big responsibility for a young boy! But that's normal in my house.






Scarlett got her Vitamix Blender in January 2012. O.M.G. I never thought it would be this easy to make her food! What a difference! Thank you to the Variety Children's Charity for paying for this expensive machine because now it only takes me minutes to blend food without the need to strain!

Wearing her new hair clips from Pretty Princess Hair Clips in Vancouver.

What a happy looking girl! You'd never know she is disabled to look at her. I'm so lucky to have her!

Give It All Up

Here I am, watching my little girl in her special tub seat. She's anxiously awaiting the water to get high enough for the jets to be turned on. My husband would kill me if he saw I was using the laptop around splashy feet. But it's been so busy around here lately. More than usual.

I've been doing paperwork (too much paperwork) to keep this house going. I've been dealing with funding for respite work because, as of Feb 29, we don't have a contract yet to allow me sleep. I've been dealing with paperwork for a wheelchair van & home renos so we can take better care of Scarlett. So far, I've spent about 40 hours of work in the last 2 weeks on this stuff. All the while the kids have all been puking sick, I've been battling migraine after migraine, 2 hours of sleep at night when my workers aren't here, a touch of the sickness myself, my husband's back is killing him from all the snow, and all the pointless phone calls. Plus life things like getting food, making tube food, laundry and the rest of the normal stuff we all deal with.


There are times that I wonder aloud if my husband and I will ever get alone time. Not THAT kind of alone time, just time without a child in our laps, on our backs, screaming down the hall......But then the answer almost scares me because, even when the boys are no longer "dependent" upon us, Scarlett will forever be. If I have this "imaginary" time where Jason and I can spend doing nothing then, most certainly, it will be because my sweet girl is no longer with us. So I feel selfish at the thought, as if I were wishing her away even though I know that's not my intent but understanding that's the reality of my wish.

The road to surviving a severely disabled child is hard. I've only done it just shy of 2 years. I can't imagine how people do it for decades. There's so much involved that "normal" people never think of. Things I never would have thought of if it weren't for being in this changed world. Like do you put a bra on a disabled young lady? Certainly my husband won't volunteer for that. I don't blame him! What happens when she gets her period? Will workers clean that up when I'm out? Will I want them to?Will she? Some sweet disabled babies can turn disgustingly violent (without intent), will that be her and will I have to choose the safety of my boys over the love of my daughter? What happens if I die? No matter who steps up, it will not be the same...will it kill her? If Scarlett lives for 40 years or more, where will she go? A home? Will she be ok? Will she be put upon as my boys' responsibility? Will their spouses resent that? So many things...on a constant roll in my head. No wonder I have a constant migraine!

Most people say that they would die for their children. That they would jump in front of a bullet, run into a burning building, shield their child with their body from a car. In an instant they would give up everything to protect and save their child. That's easy. Dying a martyr for your child in one fell swoop. How many parents are out there that give up their lives for their child everyday? Who do not eat or sleep, do not shower or see friends nor family, who give themselves over each and everyday to protect and save their child? If you're a parent of a disabled child, you do.

Trouble keeping up

So I've had some trouble keeping up with my blog. Mainly because I'm just too damn tired. Scarlett doesn't sleep much and when she does it's pretty brief. Add to that the boys are too old to nap and there goes sleep altogether. And, honestly, when is the rest of the house stuff supposed to be done if I'm sleeping during the day?

When I say she doesn't sleep, I mean she doesn't sleep. Not the "oh she only sleeps for five or six hours at night" or the "she only has one hour nap during the day". No. I mean that she goes to bed "for the night" at midnight. Wakes by 4 am by the LATEST. Sometimes (read almost always) wakes at 2 am and fusses. Then she'll get some sort of sleep until 4 or 5 am and then she's up until 7:30 or 8 am and by that time my two boys are up (or should be~ school!). That means I have a whole 30 minutes to myself in which I have to prepare her morning drugs and food (I feed her blenderized food I make from home and pump through her stomach feeding tube), get the boys fed and the oldest ready for school, and try to prep our weekday outing to the mommy group we attend before having to rouse Scarlett for her scheduled maintenance.

I do have help. Recently, I have had Respite workers funded by the Ministry take care of Scarlett Tuesday through Thursday night. They arrive at 10pm and leave at 6am. It's nice because I've been dealing with this for so long that I forgot what sleep is like. The down side is that I'm so over tired that it's not doing much yet. I also have Home Support coming. I've only had them 8 days in the last month and it's only two hours a day Monday through Friday but it's nice to have that time to shower or do the dishes or run to the pharmacy.

The Respite funding, however, is only bumped up for the workers until February. When I told Scarlett's doctor this, she told me that I'm going to have to go to the media for help. I even told her that I'm OK with having Scarlett marked as terminal because she wasn't supposed to make it to 1 year and now she's going on two. Whatever it takes to keep our family together. I understand that there's a problem because Scarlett is the first of her kind and they don't know what's going to happen to her, how long she'll live, or anything that she can or can't accomplish during her life. Right now she's 24/7 care. I don't see how that's going to change much and neither does my husband. Scarlett's missing a large portion of her brain and has so many conflicting and complimenting conditions that she could die before I finish this blog post. And yet she could live until she's 90. She can't talk (well, she says a few words but they lack any sense of meaning), she can't sit unsupported, she can't eat by mouth, she can't hold object in her hand for longer than a few seconds.....the list goes on and on. Doctors don't know what to do for her. People who love her are scared by her because they don't want to be the one she dies with.

Between trying to be "normal" with the other daily kid/house/life stuff, and keeping up with Scarlett's 24/7 demands and appointments and blending food and keeping her alive and running errands and and and....I'm getting tired. I wish I had a fairy team that would magically clean my house, feed my family, run my errands and allow me a moment to breathe.

I'll leave off with a good note though. I received in the mail that Variety Children's Charity fund has approved our request for a Vitamix Blender. That's the best blender ever for blending her tube food. Plus I literally burned the motor out of the Baby bullet. It was smoking for 10 minutes hahaha. I expected that considering I was totally not using it the way the instructions say. The Vitamix is on it's way and should be here mid-month. I'll have to post a picture once it's here!