Get Real

I've been truly neglecting my blog. It's not that I haven't had the want, nor the need, to write; I just haven't had the time. I've been in the midst of so many unbelievable things lately and, like most hurricanes, I was swept away from myself.

I've recently been in a kerfuffle over Scarlett's care. I brought her into a hospital and issues ensued.  There is confusion over her palliative status. I refused transport by ambulance because she was truly, in my opinion, not that sick (shouldn't my opinion count for something by now?). I was threatened with Family Services if I did not comply. Albeit, the doctor on call did not know Scarlett, did not know me, and therefore, made the best decision possible regarding her health that he could make. But it wasn't an informed decision because I wasn't consulted and that's where the problems arose. It's a good thing though, this bump in our lives that happened. Now, there are safe guards in place.

Our hospital has been influx for a number of years, as most small towns have. Having regular doctors here just didn't happen and now we're fully staffed. The issue is that none of them know me. None of them trust me. And now, with this glaring issue in the forefront, I'm wondering who is left to take on my daughter's care. I tried to secure someone, as they requested, and was turned down by the "collective" medical personnel. Now what....I have to take more time off from life and see who else may take charge of her care? Why don't they just tell me who got the short straw and get it over with? My time is valuable and I tire of these games easily.

They are worried that I haven't come to terms with Scarlett's palliative status. *Scoff* Ahem, excuse me while I cry tears of laughter. I have known for years now that Scarlett will not be here as long as her brothers. I feel the tug of my heart knowing I will bury my child. I've made peace with the knowledge that my sweet girl will cease to exist and life will go on without her. That does not mean that I will allow her to slip away prematurely, that I will give her no chance tomorrow because she is ill today, nor does it mean that one significant hiccup in her health should determine that she is beyond a right to live that we all assume non-ill people have. Scarlett fucking matters! Yeah, I swore. You would too if you were essentially told to give up on your child too.

I was told my Facebook page for her is an issue. They are worried about me ruining their careers with a few swipe of the keys; turning a small town against them and instilling fear in the community. Why can't they look at my page as a way to provide excellent care and get a bit of PR out of it? I understand the fear, I've seen it many times before with Scarlett. The sweet angel faced child who holds so much mystery and instills fear into those responsible for her. There is a great attachment to Scarlett once you meet her and I think part of the reason for that fear is because she so easily creeps into your heart and, suddenly, you've got a stake in life and can't be the one holding her at the end. Who wants to be the one that has her die on their watch, in their care? I get it but fear is not the best way to rule your actions (unless being chased by a dragon).

We have a meeting with our local Social Workers next week to ensure that Scarlett's issues are known and that SW cannot be used against me whenever I don't comply with medical wishes. Ok, if I were to beat her, yeah, they can be called (and should be) but not for refusing over the top care. If SWs were called, there would be no where in the province to put her. There is no care as specialized as what she receives at home. In just mere days, she would die. Those who truly know her understand this as sure as the sky is blue. And who removes a palliative child from the home just because of a parent's refusal to leave town for a non-emergent issue? I've kept her alive thus far. Yes, the medical people have done some fancy foot work to get Scarlett to this point but if I don't bring her in, there can be no treatment. If I don't keep a firm grasp on every breath, diaper, berry used in her food, sleep patterns, medications, previous hospital care.....where do you start looking for issues? If I'm good enough to supply you with answers to every question then I'm good enough to make care choices for her. Plus, you rely on me to follow through on medications, appointments, physio.....You can't have your cake and eat it too. I don't have a medical degree but I live with her and, dammit, that counts!

Another issue is that the group needed to know how far I was "allowed" to go regarding Scarlett's care. In other words, they wanted to know when they can over-ride me. They can't. No matter what paperwork I sign, no matter what treatment is put forth, I decide everything. Isn't that the "perk" of a dying child? To at least have the right on how far to push her care? Just because she's palliative, doesn't mean that she will die today, or tomorrow. It just means she's not going to become an adult (with all reasonable expectations). This is not new to me. It may be new to you but that's not my problem. Get yourself up to speed. I have other stuff to do besides hold your hand. I was left to navigate on my own. At least you have me to help. Don't automatically assume that my name needs M.D. after it to make my decisions matter.

Again, the issues going on in our lives are being one sided. The only things here they are seeing are the things that involve them. They don't see the work at home. They don't see the calls, the prep work to go to appointments in another town, the childcare needing to be in place because ~guess what!~ I have 2 other kids that need me too. The paperwork, the sleepiness, the drug managing, the seizures, the fact that our house is usually a +1 at most times during the day, there is no privacy. It's not just go sit at the doctors and then go back to la la land. It actually takes a lot of planning to just go down the street for an appointment. And this recent turn of events has screwed me.

I have renos to be done for Scarlett. Our deck was supposed to be easy. It was taken down over 2 weeks ago and nothing has been done since. That sucks. We used the deck. Even if it wasn't wheel chair accessible, we still used it. And now we're stuck without it. Not happy about that. But it's just another example of things that I have to focus on, knowing that I can't truly get on it. Like everything else.

The best part out of everything, besides the fact that Scarlett & my boys are currently healthy, is that my home care team is nearly finished. I only have one more person to bring up to speed. There's so many people now that I feel the need to sit everyone down so they can all meet and see who is on the Scarlett Squad. These are my most trusted people and I will finally be able to delegate some of my crap so hopefully things will be easier on my family (and I won't be running around from task to task like a chicken with her head cut off).

I suppose thought, it's food blending & drug dosing time before my angel with a devil's 'tude wakes up.

Contaigous Feelings

Ever heard that your mood is dependent upon who you hang around with? If you posse up with depressing people you start to brood. If you mix with happy people you walk around with a smile. It's true, you know. We are influenced by the feeling of others and sometimes don't even know it.

I have been feeling a bit erratic lately and I think it's because of Scarlett. She's influencing me and I just clued in (ya, I'm slow off the start~imagine that!).  I don't want to say she's moody but man, can she ever flip the "happy to sad", "screaming to happy" switch fast! The saying "Ain't nobody happy if mama ain't happy" should actually be "Ain't nobody happy if Scarlett ain't happy"! If she's screaming and gagging and pissy we all pay the price. No one can be fed, taken anywhere, or sleep for god's sakes! If she's happy we all get our rest, have time to spend with each other, and eat a hot meal...maybe even together!

Scarlett isn't the most stable, whether it's her health or moods, but she's been wicked lately. I believe that her behavior is the reason why I'm such a mess the last few weeks and my mood has been influencing others...trickle down theory I guess. Perhaps that's why I can't articulate why she's not herself, there's nothing to define or words to say exactly why she seems off. I felt this way when she was 2 months old and it took 6 months for a doctor to stop and look at her the way I do, to listen to her the way I have, and there was no "real" reason for me to feel that way when she was 2 months old but I did. I knew when I passed her over for the first MRI that there was something permanent, and not fixable happening to her. I was right. I've brought her into the doctor office on a Friday (over 6 months ago) because I knew she had an ear infection but nothing could be found. By the following Wednesday,  we were in our local ER and she was in dire straights requiring oxygen, steroids, antibiotics, nebulizers and I told the doctor "I told you so".  I was right again. Same feeling applies here I guess. Scarlett is normal (for her) and there's "nothing wrong" with her. But I feel like there is and, here I am yet again, trying to figure out why I think she's in trouble. You'd think I'd have it down pat by now but obviously I don't and if I have one more patronizing "There, there. You're just tired." or " Sure you do honey." I'm gonna cut someone. Seriously. I know how crazy I come across when the tests say she's fine and I'm saying she's not. I understand how I look so overtired and that's why people think I'm on the edge. I am overtired. I am worn down. Hey, I'm not saying I'm not.  But being frazzled doesn't mean I'm wrong, either. Being right so many times before doesn't mean I'm right this time around too.

So here I am, trying to weed out what's going on with her while I'm fighting fatigue, hunger (like she's gonna let me eat), confusion, daily life full of a tween's headstrong arguments, three year old melt downs and dishes. Maybe that's why I can't figure her out; I'm not capable of fully listening to what she's saying, just enough to know there's something screwing with her but not enough to make it better (if I can). I'm surprised I haven't been committed yet! Oh well, off to start another day :)

Everyone has those moments when their drained. We've gotten home from the hospital, just 24 hours ago, and now is time for the let down of built up anxiety, of pent up frustrations and upset. During our hospital stay Scarlett was low on oxygen (82-86, anything under 92 is a concern), she stopped breathing, her heart rate dropped from 101 to 44 while sleeping 3 times in a few minutes, her breathing slowed down, her heart rate dipped lower and lower, her xray showed her lung infection spread, she lost half a kg in weight, and I accidentally pulled out her g-tube. We were only there 9 days.

On top of that I was thinking of my boys, how they were being shuffled around (with people I love and trust, of course) and what was running through their heads. I was worried that I didn't have enough blended food, that my boys were missing me, that there were a zillion other things that I should be doing. The mental exhaustion is just as bad as the physical when you're trapped in the hospital with nothing but your thoughts and beeping of machines.

Scarlett is doing fine now. Or should I say she's doing "Scarlett fine" in which I mean that she's still facing her daily struggles and I along with her. But this journey has been the most taxing for whatever reason and I'm bagged. The stresses that present themselves in those situations are increased ten fold and I even had a run of visitors this time! The diversions that my friends provided was amazing and yet I feel worse off then usual. I even came home to cooked meals and a plant.

However, being on this trip I have had clinical confirmation of the issues I felt were going on and, that my friends, is the hardest. I've seen the changes, both good an bad in her, but seeing how bad she really is in concrete medical form is daunting. I watched as her heart rate limit was lowered because she kept setting it off, time and time again. I watched her respiratory monitor tell me that, although she was breathing, she was slowing down to near breathlessness (3 on the monitor) time and time again. The impact of watching that all day, for nine days, takes it's toll.

My youngest boy has been stuck to me all day, crying when I'm out of sight, holding my arm saying how much he loves me and requesting hugs like it was all he needed to sustain him. My oldest has been a bit distant and I think it's because he resents me being taken from him again but feels bad about it because he knows it wasn't his sister's fault. He's a complex thinker and sometimes he won't talk to me until he can sort out his own feelings. So when I'm gone, I know how hard it is on my whole family; not just me and Scarlett.

And this is my life. The extreme highs and lows. I'm not complaining, just venting more than anything. The plethora of feelings wash over me and it's hard to absorb what I'm truly feeling before something else takes hold. I feel like lashing out and I don't know if it's just because I'm over-tired or if it's from the feeling of helplessness that I abhor. What's more is that I have a TON of work to do; going to the hospital is a make-work program to which I'd love to decline from. As if I didn't have enough on my plate, I have to re-orientate myself to where my children and their lives are because I missed sooo much, I have to contact everyone and their mother about follow-ups and drugs, and keep up on the stuff I couldn't do that needs to be done while I was away. *Sigh* Yeah, I guess I am complaining a bit.

Then there's the feeling of guilt that my friends have taken time away from their family to provide for mine, the babysitting, the dinner, the school papers...I feel bad that they need to step up because I can't. A mother, or at least this mother, can't handle needing others to get by and run their house but I have to. And it kills me I can't do it on my own; as much as I know I can't. There's just too much and I'm just one run-down person.

I don't know where I was going with this post or exactly what I wanted to say but I just needed to write. I know I'm not the only person who goes through something like this and I'm not sure if that comforts me or if it makes me sad to know there are others out there struggling to keep sane and just make it through the day.  Either way, I just needed to put my thoughts down and maybe it'll help me tomorrow.

Not where I want to be

I don't know about anyone else when it comes to this. I can only rely on my own feelings and thoughts but I'm sure I can't be the only one. I'm positive that parents, upon hearing their child is/may die soon, dream up the scenario in their heads (and hearts) of the when and how. Well, yet again I got a kick in the pants with my "fantasy" moment. Two months ago I had that slap upside the head, with my three year old in tow, on the side of the road with purple babe in hand, trying to bring her breath back. And, just a half hour ago, I got another reminder that the "dream" of Scarlett passing in my arms at home isn't as realistic as I would hope.

She has apnea spells, the reason is yet to be determined. They used to last only 15 -20 seconds. But then they slowly increased in duration and frequency. Want to see a grown person go sheet white in a heartbeat? When someone holds Scarlett and she stops breathing, so does the person and their face becomes awashed in panic. To me it's normal. Until today. Today I watched the monitor fall and her chest stop. We are in the hospital, have been for 3 days. Her lung infection is growing, despite relentless drugs, despite our best efforts. She's never been a quitter and I will not give up on her either. But having that damn machine sound alarm, hearing the footsteps run down the hall to our room concreted that a quiet, peaceful moment is unlikely for my daughter if her time is to come. I don't like that useless feeling, that I can't control the when and how, that I can't stop it no matter how hard I try. I have accepted that she's not here for a long time, or have I?

I read somewhere that parents like me go through the stages of grief over and over and over because our life is constantly in flux, dreaming of a family vacation, wondering if death is coming today, hoping to have a seasonal moment with your child before it's too late. I planned on getting professional pictures of my family when it finally looks like spring up here. I even ordered Scarlett a dress which should be here in a few weeks. Now I'm kicking myself for waiting. I may have waited too long. And then again, she could get better and we could go home next week. I don't know. As hard as I may have tried, I've gotten bogged down in the daily crap, in maintaining Scarlett and trying to do things that really don't matter, and I stopped living in the moment with her. I stopped realizing that, as much as I know it, tomorrow isn't guaranteed for my daughter. I think I stopped feeling it so I could just get through the day. But, being here in the hospital with her, there is little else to do but think of what time I've squandered with my entire family.

And now that she's suddenly awake, I'm going to spend time with her even though this isn't all I wanted to post. She's no longer going to wait for me to finish anything before her. Nothing else matters.

Mother's Day Meltdown

It's Mother's Day. This is normally a day I don't pay much mind to but, for whatever reason, I'm really sentimental. Honesty a weird feeling for me. Usually this is just another day filled with dishes and laundry, meltdowns and hugs, timeouts and snuggles. But when I opened the gifts that the kids had made me at school I cried. Here's why:

(From Carson 3 year old) A unique Popsicle frame with his hand print and this verse....

I miss you when we're not together
I'm growing up so fast
See how big I've gotten
Since you saw me last?
As I grow, I'll change a lot,
The years will fly right by.
You'll wonder how I grew so quick
When and where and why.
So look upon this hand print
That's hanging on your wall
And memories will come back of me,
When I was very small.


As I read Carson's gift I started to tear up because, normally, all the kids in the class get the same thing. I knew that this verse wasn't true for Scarlett because she may not get bigger, she may not grow, and I will not have memories come back to me when she is older. It made me sad that I read Carson's gift and thought of Scarlett. I did not want to open her gift because I knew what it would say. I was wrong.

(From Scarlett 2 year old) Same frame, completed by Jess at Strong Start, foot print and this verse...

Scarlett has a certain way
Of growing bigger everyday,
Her little feet and special smile
Will stay in our hearts a long, long while.

I cried because Jess had changed the verse because of Scarlett's conditions. Because she knew that it's not likely that Scarlett will get that far. And it upset me because she had the forethought to change it; she was trying to give me something more appropriate.

(From Cole 9 years old) A card that he wrote telling me that he likes spending time with me. That was hard because I don't spend time with him and I felt like I was being stabbed in the heart. He also made a laminated card that said he liked making cookies with me and had drawn a picture to go with it. I cried again because I don't make cookies with him anymore. I haven't since Scarlett was very little. It was something only the two of us did and now we never do.

Eff'n kids! I laughed afterwards about how sad it all made me because that wasn't the point. I guess I was just weepy and needed the excuse to cry. I know, I know, everyone feels like they're not doing enough for their kids at some point but I  KNOW that I can't meet all their needs and it kills me.

I read on a blog comment that this woman, growing up, had the stress of living with a younger disabled sibling and, as she put it, was faced with the horrible, welcoming thought that if the child died she'd get her parents back and how wrong it felt to have that on her mind at 8 years of age. Then, a few days later, Cole's teacher called because Cole requested counseling (at her suggestion) because our house is so stressful. I'm all for it if Cole needs to talk to someone...someone more objective than myself. But it made think of this woman's writing and I wish there was something I could do to alleviate his stress. I can't really but I wish I could.

I realize that I'm kinda a downer and my last post said that I was going to look on the bright side but I'm still allowed to have my moments of blah, right? I have been happier with my family and more positive (I think) and we have been nicer to each other - likely due to the less stress I'm putting on everyone. Bedtimes still suck royally, drugs are still being made, pumps still need charging but it's a work in progress and I think we're finally starting to get the hang of it.  I had my little *sniff sniff* and it's over so now it's onto dinner and spending time with my family.

Inspired by a Father's Love

I don't know how exactly to start this post. Yesterday I read, for the first time, about Avery. She has SMA and is terminal. Her parents have to watch her precious body slowly shut down. She wasn't supposed to make it to two years. Her dad started a bucket list for her and it went wide!  I read the blog post about her and I could relate; watching your child gain and lose abilities, living in the moment because what may be coming next will break your heart, surrounding your family in love and teaching others about your life and those of others in similar situations.

And then today I read that, just three days after a thumbs up doctor visit, just 15 minutes after her smiling picture was taken, her lungs collapsed and she died. Her father posted a loving letter "by" Avery. I didn't know about this child until yesterday. Not that her story wasn't compelling, but I've read a thousand of these posts and I live it everyday so as much as I felt for this family I wasn't affected that much. Until I read that she so suddenly died. I wanted to scream. I wanted to break down. Not for only this child and her family but more so for my own.

Scarlett has been having some issues lately and she had a close call last week. Not 911, hooked up in the hospital, close call. But suddenly there I was on the side of the road, three year old strapped in his seat watching everything, praying that this wasn't how it was all going to go down. She's fine now but the whole situation jarred me to the core.

Conversations lately with separate individuals have centered around Scarlett's "pending doom". Doctors have started asking about DNRs again ( we went in for antibiotics not anything that serious). Coupled with my previous feelings, this all makes me nervous. But it also leaves me with the question of whether the universe is trying to tell me, warn me, of what's coming next or are theses comments and situations happening because I'm putting that feeling onto others who are simply reinforcing what I'm thinking? Food for thought.

Reading about Avery has left me with a new perspective. Her father, Michael, has been quoted as saying, “We can watch her die, or we can let her live.”. I want to watch Scarlett live. It's a hard, fine line to travel as I am always required to be on guard for every symptom, sign, and compiling evidence that she needs help- to ignore the smallest thing could impact her health greatly. It's always like I'm looking for the worst, waiting for her to die (waiting, not wanting) because her health degrades so fast. Reading today what Michael said  clicked for me. I will not ignore Scarlett's overlapping issues but I will try to see past them, see the child through the complications, and love her to live. 

The suddenness of Avery's passing reflected my own fears about Scarlett. Her father has unknowingly affected me with his words and his courage in the most devastating time in his life. I hope that, even though never actually meeting his precious Avery, she has changed not only my view on life but those of others too. Thank you Michael and Avery for inspiring me to be better for my daughter and for my family.

It's hard sometimes. I don't often compare children. Not because of my circumstances with Scarlett and her rollercoaster ride of ups and downs but because it's just not something I think to do. But every once in a while I'll see a child and my heart hurts. I see him/her do what my daughter should be doing and I know she'll never get there. Something as simple as running and giggling or creating butterfly clothes pins. Or I see my son go to other adults to play because he knows that mommy can't because she has Scarlett. He's not upset about it, it's just the way it is. And it kills me that I can't do things for my boys the way I want to because there's so much to do to keep Scarlett alive and happy.

How do terminal parents do it? Knowing that their child will certainly die and to only be able to stand by and watch, knowing that there is nothing, nothing, that they can do to stop the end from coming. To solider through while their hearts break over and over. I don't know. What's worse is every wheeze, every unusual or erratic happenings surrounding Scarlett's patterns puts me on edge. One moment she's fine and the next I'm wondering if there's trouble on the horizon. I teeter on the edge so many times in a day that I'm surely to go mad. How can one person go on living while holding Death's hand? And how melodramatic does THAT sound?  Probably a lot.

I have so much to be grateful for and have had so many wonderful blessings bestowed upon us. Scarlett has claimed more than her fair share of hearts. She's taught me so much : to live in the moment, to see the beauty in the smallest (often forgotten) things, that getting to the finish line isn't always good or needed....she's amazing. But she has a dark side, the screaming, the ill health, the drowning in paperwork just to keep going. It doesn't stop. And then again, everything has to stop when Scarlett is in need. Playtime, bedtime, eating, dishes, shopping, driving...it all has to stop right then until Scarlett's safe again and then life can start again for all of us. I think I have mental whiplash. 

The scrutiny, the looks, the explanations, the needs....it doesn't stop. I'm lucky I have her, for sure. I would never trade her for one moment of certain sanity. My boys, as exasperated as they are to always come second or third or fourth to Scarlett, wouldn't want their life any other way because they love her so much. Even at their young ages, they know she won't be here forever. Carson would ask me at two years of age when I called from the hospital to tell him I'm coming home and he would reply, " And Scarlett too?" ...because he knows there will come a day where I will come home without her. Cole wants to be here lest Scarlett passes because, as soul shattering as it will be for him, he wants to spend the last few minutes with his sister so she knows how much he loves him. Do you understand how proud I am of my boys and how much that breaks my heart to put them through that? Sometimes being a parent sucks.

Life isn't always so dramatic or dark. We have awesome moments too. We run through the house with her in my arms chasing the boys, yelling HOT FUUUUUDGE at the top of our lungs while the music blasts. We see who can make the funniest faces to get her to laugh and end up laughing at our selves the most. My friends, who adore Scarlett, hold her and play with her and love her and sing to her and we are lucky.

All of this makes me smile and feel happy. But I can't stop the heavy feeling in my heart from creeping in from time to time. I can't help but share dark, ominous glances with my closest friend when Scarlett's health is failing. She knows. She feels what I feel and can sense something's brewing. I do too. I don't know what's worse....feeling the way I do with no one understanding me, or to see my own fears reflected in someone else's eyes, confirming what I already know is yet to come.

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!