Standing still

I’m at the bottom of my second pot of coffee and Kaitlyn doesn’t need anything for 2 hours. So I can either write here or bake more cookies. I pick here.

If it’s possible to drink too much coffee, I think I may have hit that volume. I can feel my heart beating in my foot. All the energy and lack of energy packed in the same moment is hard to navigate in. I want to scream, hug someone, cry, go somewhere, stay here, write it out, run from feeling all this, face feeling all this, fix something, and knock things over; all at once.

Two weeks ago our house was broken into. Whoever it was only went through my room. Or at least only obviously went through my room. It felt so personal and gross. My drawers were all open. All my things were out, exposed and just messed with. No one in our life goes in there, or looks in my drawers, especially not my underwear. I feel like I went through a whole process and I just now, in the last few days got to the place I can say it out loud. The first day I was ashamed and embarrassed. Second and third day I was so deflated and sad- everything made me cry.  Then I had a few days I didn’t trust anyone in public- everything made me jumpy. As those days passed, I settled into days I was pissed. I was more daring those days, saying things out loud I probably shouldn’t. Anger is weirdly easier to function in and deal with than sadness. I know this little break-in is not the end of the world. There is so much more going on than to let that take over. But it’s also such a violation.  Not because of the stuff itself; but because of the space that was private, personal, and just my own.  I wish people who did awful things realized the impact they leave in the midst. The day it happened, I reacted entirely wrong. I melted, cried, and cleaned up. I was stuck in the ugly cry. I didn’t want Kai to find out especially because he’s so fiercely protective and he believes the police can and will solve everything. I felt ashamed. I did nothing wrong, but I felt so gross. There was dirt on my mattress from where I think they stepped onto my bed from the window. I washed that too, cleaned the walls, and cleaned everything I thought whoever it was touched. I used an entire bottle of Clorox Clean-Up that night. I literally have $12 cash to my name, and they left that. As far as I can tell, they didn’t take anything. I can’t wrap my head around why. So many things in our life that’s what I’m asking, why?? Whoever did it probably hasn’t thought about it since, or has moved on to being an asshole somewhere else; and here I am nervous to get dressed, locking my door 4 times to make sure, and constantly looking out my windows and doors. I think all the life happenings and heart heavy days of the past month especially; I’ve learned more than once that stuff is just stuff and it really doesn’t matter. I don’t give a flying crapsicle about material stuff.  However, I value the space we’re in because it’s our safe zone. This is where we can dance it out, laugh, cry, talk, bake, and just be. And now it feels different.

Both my kids have faith in people that even the most hesitant person to trust others could be inspired by if they took the time to listen to either one of them. Kaitlyn somehow only sees the good, right, and beautiful in everything. Kai believes in government like no one else I know. With so many people angry with government, I prefer to listen to Kai. It doesn’t matter if he’s right, or if government is wrong; it’s such an inspiring thing to see Kai talk about. He whole heartedly believes that the people in government want to and do good, for others. He talks about history like he was there for all of it and he has this indescribable enthusiasm for all things America. Kai has such determination in his eyes. He has this intense look when he asks me a question about fairness or logical explanations for questions so big, I can’t find an answer good enough. I have to be honest and say I don’t know when I don’t. When I get that look, I want to do anything to find the answer. And every time I search for it with him, I learn more and am even more inspired to keep charging forward. Both kids and I met with Senator Mike McGuire late December. I wish I had taken more pictures or written more down that day. I could tell by watching Kai’s eyes and all our conversations leading up to that and after; he believes every word Senator McGuire said and he was and is completely awe-inspired. Kaitlyn and I were (and are) too. I don’t know how or when things will get better, but I have a lot of faith in McGuire. That’s part of what’s heart-heavy and frustrating with a standstill; there are some incredibly good people in this who truly do want to make it better, and yet we still aren’t making enough progress. Yet. That's not a fault or a blame- just an acknowledgment that waiting through a process can feel incredibly still.  

                                                

Last week I received a letter from an attorney for the Department of Managed Health Care. I’ve spoken with her many times, but the letter felt like a formal finality. It’s weird, great, and yet feels defeating to receive a letter after sending out so many. I sound ungrateful, but I am incredibly honored to have the interactions I have had in this process. It’s also very exhausting to not have results. In this advocating, one answer sometimes leads to another avenue. And then sometimes, it leaves me stuck, trying to figure out what I can do next. All the hours turned days, weeks, and months spent advocating for a better system; reporting the lack of standards, asking for accountability, record keeping, note-taking, calling, leaving awkward messages, meetings with ironed pants, jumping up and down in my living room with Kai when things seemed forward-moving, laying on my bed sulking when it felt stuck---all of it. It feels. That’s not even a sentence except it’s the most honest way to describe it. It feels.

Pediatric home nursing care is not safe as it’s set up. No one I’ve spoken with on these issues is arguing with that fact; yet no system or person is able to fix it yet.  There are many kids with very complex medical issues who don’t have home care, or who have incredibly unsafe, unaccountable home care. This is unacceptable and should be shocking, talked about, and fixed. The system it’s in is a cluster of agencies that don’t communicate enough. It feels like each system finds a loophole to deem itself free of finding the answer. It’s impersonal yet it feels so intensely personal because Kaitlyn deserves better. All kids who need home care deserve better. California Children’s Services, Sonoma County Public Department of Health, Kaiser, Department of Managed Health Care, Senator Mike McGuire, North Bay Regional Center, California Association for Health Services At Home (CAHSAH)- they all responded back to me. And while I do feel incredibly grateful and so humbled by this experience as a whole, I want to be more productive. We can do better. We should do better. All of us.

Home nursing care is covered in this illogical grey area so that insurance doesn’t have to cover it in the sense that they’re accountable for it (at least not Kaiser after many letters, calls, and a lack of answers). Kaiser found a loophole for accountability. The biggest loophole for accountability is in the agency who got rid of us for advocating for accountability. As a small agency, they're not overseen by Department of Managed Health Care. What they did to us was awful, and we aren't the only ones they got rid of.  CCS (California Children’s Services) and Medi-Cal covers home nursing hours, but they can’t seem to do anything about the lack of its availability, accountability or training and they don’t oversee it. In our experience, hospital nursing and clinic nursing is very different- it is skilled, there is training, and the system is a lot more clear. Medi-Cal doesn’t pay enough. So the reimbursement for agencies that hire nurses is very low. This is a part of the problem, but doesn’t define it in its entirety. Just because an agency doesn’t receive a lot of funding does not exempt them from not providing what they say they do, or to treat people poorly, in my opinion. The only agency in our county that was providing pediatric home nursing care at the time we had it; was reimbursed $40.57 an hour for RN level care (according to an email from the owner of the agency sent out in November 2014), which is what Kaitlyn required. Yet they pay their nurses $17.50-$22.30 an hour. The agency overhead is also in a grey area that we aren’t entitled to know.  No uniforms are supplied to their nurses, no gloves, soap, hand sanitizer, or any supplies (those are all supplied by the patient and/or the nurse personally).  There was no training for any of the nurses Kaitlyn had, no in-service days, etc.  Not ‘a little’ training- in actuality, there was none. There is no accountability to patients or parents on how many hours they’re charging or claiming. None. Public Department of Health licenses these agencies, and they’re investigating currently. The hope is that this is done thoroughly.  Hope. That’s what I’m holding onto.

Yesterday, I spoke again to a supervisor from CCS. She’s thorough, incredibly compassionate, helpful, and I whole-heartedly think she’s doing everything she can. She recently called another agency on our behalf, who is said to provide home nursing care in our county, but with no nurses available. Kind of like a store saying it sells something but it doesn’t and you don’t know if they ever will, but they say they will- with no time frame. Clearly then, the store isn’t selling that. Right? Except that pediatric home nursing care is more important and should be considered more urgent. I don’t think an agency should be able to claim to provide something it is not. We are among 25 others on a waiting list. We've been on that list since August of last year. I’ve heard of another family (not our county, but still in CA) who has been on a waiting list for that same company for over 2 years. How is this ok? It isn’t.

I wish I had an update that was filled with answers and a clear plan, but I don’t. I guess in actuality, we never really do.  I don’t know if navigating in all these unknowns gets easier, but we do function better in it. Some of the unknowns are big and could swallow us whole if we let it. Kaitlyn, Kai and our close circle teach me every day to slowwww down and appreciate what’s right here, right now; in spite of all the coffee. The standstills must have a lesson too.