We all count

This morning I was looking for pants in a pile of clean laundry on my floor. Initially, I had put the clothes on my bed to inspire me to fold before climbing into bed. Fail. I threw those clothes on the floor at 1:30am after replacing the battery in Kaitlyn’s feeding pump. Back to the pants. I found some and tried to put them on but for some reason I didn’t really look at them. Leg avoidance. I don’t want to see them, plus they’re blinding. Ohhh Myyyyy. WHYYYYY ohhhh whyyyy don’t these fit? I totally ate kale last week. Twice. I couldn’t get them over even one knee. Finally I looked down and saw I had Kai’s pants. Erps. “I’m so sorry”, I said to pants. Out loud. That was apparently my last straw today. (Side note- I don’t think I have that saying right- & Kai’s constantly asking me if I have extra straws before he tells me bad news). I just apologized to pants. I am constantly apologizing. But to pants?! Enough. Now that I have my big kid pants on, I have more to say & I will try and delete all apologies.

Sometimes people don’t know what to say when they see us, especially if Kaitlyn’s asleep. I totally get that and I’m not offended in the slightest. I can also relate. I say things out loud that are awkward for everyone. I’ve heard repeatedly;  “I wish I had a stroller like that. I’m so jealous”, “I hope she pushes you when she wakes up”, “WOW”, “oh. Dear. What a great stroller”, “I bet she’s tired”, “she needs a hat and Jesus”, and many more. None of those are offensive, in fact a lot of it is correct; but I don’t always know what to say either. Sometimes when I’m out of responses, I just laugh, cry, walk away, or I make a bad joke about needing beer or coffee. And sometimes, like this past week-after the accumulation of many weeks, and months which have turned into the past few years; what was and is said IS offensive and I can’t find a rational way to absorb it or justify what is in front of me.

Kaitlyn receives home nursing services through a company who employs home nurses (how’s that for politically correct?). One day a week- I get nursing help. The system has always been a challenging one. The company hires nurses, but doesn’t pay them very much. The reason for that can probably be blamed on our system as a whole. However, nurses deserve to be paid an adequate amount. The company goes through nurses very quickly. Many times over again nurses are hired, ‘orient’ here and quit before they even start because they found a better paying job at a hospital or a facility where they would rather work. Some of the nurses they’ve hired have been unsafe choices really. They no longer watch Kaitlyn- but I am very protective and hesitant to start anew with this company when they tell me how great a potential nurse is. The last time I was told the potential nurse had read Kaitlyn’s chart and was excited to meet us, it turned out the ‘chart’ the nurse had read was 2 years old, which was before Kaitlyn had a central line. And the nurse didn’t know that Kaitlyn had a central line when I met her. That’s an important piece of information missing. The one nurse who does come is incredible. She’s compassionate, thorough, skilled, reliable; and Kaitlyn, Kai, & I absolutely adore her. None of my complaints about this company and process are about the one individual nurse who does help with Kaitlyn. The company itself though hasn’t listened to my concerns, continues to be incredibly rude and their story and explanations keep changing.  I want to understand their perspective but I’m running out of ways to convince myself they’re doing things with good intentions and honesty. 

I do understand that they’re a business. They need to make money. In a letter from this company written at the beginning of this year to inform families of changes to the health care system, they wrote specifically, “we make no money at all in taking Medi-Cal”. The letter went on to praise themselves for a job well done and to express frustration with how they have to manage the unfortunate system with Medi-Cal clients. This letter wasn’t sent to just me. It was a letter sent to all families of clients of their agency. I think this is where some of the frustrations sit for all of us. I feel defensive because while Kaitlyn does have Medi-Cal as a supplemental insurance, she has regular Kaiser insurance as well. More importantly, regardless of how a child is insured- the treatment of them as a patient and their families as caregivers should be the best that it can be. As much as I want to think all things in health care relative to children especially- are done with compassion, grace, and enthusiasm for the child’s best interest; that’s not always so. This is not a problem exclusive to this company alone-our county, or even our state. I’ve talked to many parents who have experienced the same frustrations with this company specifically, in other counties in our state, & out of state. I can’t speak for them, but the conversations I’ve had in the last few years have been incredibly validating- but overwhelmingly sad and frustrating.

This is uncomfortable to talk about. So why am I? Partly because I just apologized to a pair of pants, and I feel it’s important to start this conversation. I don’t count less because I make less. Socially, I need to remember that.  Kaitlyn doesn’t count less because she has a Medi-Cal insurance card. Home care is incredibly important. Caregivers sacrifice a lot and work incredibly hard; and yet socially, we aren’t always treated like we count as much as we should. Companies who employ nurses and other medical caregivers to provide support to families like mine should do so without any undertones of being defensive which comes across as dishonesty and without frustrations with us for just merely existing. Not all people who benefit from Medi-Cal are trying to take advantage of systems, taxpayers, and the entire world. In contrast to how I’ve been treated by this company, Kaitlyn’s Kaiser providers never mention Medi-Cal. They mention our names as people. They treat me like I am a part of the team, not apart from it.  After this week especially, I want to go hug everyone at Kaiser and thank them for always treating us so well. I hope I thank them enough.

I see some of the facebook conversations insulting anyone on a ‘system’ and some of them are so disheartening, I just sit there and cry. I always want to apologize. I do apologize. Constantly. And that needs to stop. I am not lazy. I do not take advantage of anyone. I have felt guilty for eating because I didn’t know who to thank when a Safeway card anonymously showed up in my mailbox. We are not on food stamps, but if we were; that would be another thing I would feel horrible about. A friend once told me how frustrated she was because a food stamp recipient ahead of her in line had bought fancy cheese with food stamps. When did we find it okay to judge people for what kind of cheese they buy? That conversation was years ago but it’s stuck in my memory anyway. I know there are people who take advantage of systems. However, there are also many people who don’t.  Friends have told me, “we don’t mean you”. I so want to take comfort in that because it’s incredibly uncomfortable to confront any of this- but it is me. This is my daughter. And this is our Kaitlyn. The words we choose to say out loud to each other count.

Why is this week especially tough? The company wanted us to meet a new potential nurse. Given how that went last time, I was nervous and so I replied with my hesitations. They then said their policy is to send the new nurse out when the current nurse is there- that I wouldn’t be able to meet the nurse beforehand. I was told I could be “in the background”. Uhmmmmmm. No. I am not in the background. And I am not comfortable with a new nurse starting on the one day I have help and had planned to actually leave my house. In previous nursing encounters, I’ve always been able to meet a potential nurse first. I’ve always signed a time card for those meetings, termed; “orientations”. But now that story is changing and I won’t exhaust you with every pesky detail. My stomach has been in knots all week. I can’t sleep well, even when I get the opportunity in between Kaitlyn’s feeding and medication schedule. I’ve cried a lot, written out my concerns and I’ve found my own accountability in speaking up better. I didn’t let what was so unfair take over; I did let it all affect me. Seeee… not apologizing for that.  I made phone calls, wrote letters and researched.

Every day, repeatedly; I review our day in moments and criticize it in parts; wondering what I could have done better to help Kaitlyn and Kai. Was I exactly on time? Did I call the right people if it was warranted? Did I watch Kaitlyn enough? Did I interpret her movements, reactions and pain correctly? Did I give Kai enough attention? Did Kai get to baseball? Did I return phone calls? Emails? Did I contribute enough? Did we enjoy the moments to the best of our ability? Did I thank people for what they do for us?

I can’t fix our system. I can’t fix very much. However, I can use my voice. I can speak up. No matter how much I want to blend in and not make a fuss, I count. I am here, caring for Kaitlyn & Kai to the best of my ability.  It shouldn’t take 6 months for a child to get a wheel chair stroller. Home care should be a priority. Insurances; well before the Affordable Care Act, have been denying coverage for a wide variety of incredibly important aspects of healthcare.  Medications, if they can help; should be able to be prescribed by a doctor. Medications, if prescribed by a doctor should be covered.

Hey pants, I’m not sorry.