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.
