Sometimes my heart aches for my sister

Posted: February 8, 2012 | Author: | Filed under: Day in the life | Tags: , , | Leave a comment

A few times over the past week, my sister has opened her phone conversations with me with mention of either people talking about eyes, or that she was “born that way.” I know she’s got some new staff in her supported living program, and that she’s been part of some of the meetings during which I imagine my parents have tried to explain to these new people what Lily’s reality is like. My heart sinks when I consider that it might be a reaction she’s getting from people in public. She’s clearly upset by it, if she’s telling me about it. I am at a loss, though, as to how to comfort her. It’s hard to help her find the words to express her emotions, and therefore hard to know if she just needs to vent or wants help finding a solution of some sort.

It’s been a rough week for her in other ways, too. When I called her on Saturday, she replied to my greeting by saying, “Ellie, I’m crying.” Her voice definitely conveyed that she had been struggling with tears before I called. My immediate suspicion was that she was experiencing emotional upheaval before starting her period, which was bolstered by my mom telling me that poor Lily was also experiencing an acne breakout. Sure enough, on Tuesday, I was proven correct.

Why should this tug at me so much, when it’s a normal part of human biology? Well, remember: Lily entered puberty at a typical age, for current American society, but only experienced menstruation a couple of times during that first year. Mostly, her epilepsy, which had been pretty well controlled, erupted in frequent grand mal episodes. For the last 15 or so years, she hasn’t really had periods – but she’s had a huge number of seizures, of several kinds and varying magnitudes. My mom wonders if her newest anticonvulsants – which are, happily, working pretty well – have less of a suppressive effect on her hormones. Thus, Lily is currently only just learning to navigate her own body’s regular fluxes. Some of that includes distressing feelings, like the sensation of having wet her pants without having done so, or cramps. (I seriously hope that she is spared the migraines that typically hit me as I start my period!)

For now, I’m calling my sister more often, to try to cheer her up, or at least to distract her. I’ll probably send her a care package, too – chocolate is something we both love! Hopefully we’ll figure out how to help her deal with this change to her life soon.

Bad days are when all of the family’s disabilities and problems stack up

Posted: July 22, 2011 | Author: | Filed under: Day in the life, Medical crisis | Tags: , , | Leave a comment

Over the last couple of weeks, I learned that Lily was hospitalized for a major bacterial infection, my dad broke his ankle, and my parents are facing resistance from the insurance company over whether Lily’s hospitalization (the second this calendar year) was “medically necessary.”

I just learned yesterday of a death in the family.

And that Lily has a weird new rash.

And one of her current staffers may not be working out. There’s reason for my folks to suspect that she’s not being appropriately proactive in helping Lily get to the bathroom, and they’re worried she’s not changing Lily’s bedsheets after she soils them. (Which makes me wonder if that new rash is all that surprising.) It seems there may be some weird miscommunication happening, and a disjoint between official program policy and my sister’s desire to manipulate the system. Unfortunately, Lily doesn’t understand that she could be damaging her own health – especially so soon after hospitalization! – while amusing herself.

I just feel so helpless. My own life is not pretty at the moment; I think I pushed too hard to get back to work and to get back to normal after my recent illness, and haven’t healed completely. There’s also a chance that I have a second infection that takes a few months to resolve. Combine that with some uncomfortable recent weather here, and some good and bad excitement, and I’m wiped out. I don’t know what I can do to help my family, but I’m trying to be supportive, to check in on them and send them small gifts. I’m in no shape to fly to where they are to step in and physically do some of the work that needs doing, and that saddens me tremendously, and I’m trying to stop feeling guilty about that.

What really upsets me is that this feels normal. It seems like the family only ever has a few weeks of relative calm at a time, and then a whole flurry of small-to-large sadnesses or stresses happen – which I may have said here before and suspect that I will say here again. My life has been happy, really it has, but these clusters of sadness have happened for years and years, so I feel like I should be used to it…and able to cope more cleanly. The other thing I feel is that times like this week definitely reinforce my fear of being happy – I can’t ever relax into it, because I’m convinced that something bad is about to happen.

Edited to add: Seriously, it’s only a few hours after I posted this. In calling to check on my family, I learn that they spent last night in the ER, and Lily’s on a new set of antibiotics, and while she’s home now and was capable of relatively normal conversation, she also was extremely tired and acting really snottily.

Happy first year of independence, Lily!

Posted: March 1, 2010 | Author: | Filed under: Great news | Tags: , , | 2 Comments

A year ago today, Lily became the official occupant of an apartment unit. She started out with short visits there, while furniture and staffing were finalized, and now spends almost all of her time there and very few overnights with my parents.

It’s incredible, really. Six months before she got the apartment, Lily was sedated in a ICU bed, fighting to recover from an extremely bad infection of Salmonella. (That story will be the subject of another post.) Now, she’s much more independent than I think I had ever dared to hope she might be.

When Lily lost her vision, she used to sit in the middle of a room and not move. She had a hard time with learning how to navigate without sight – she even gave up, in some ways, helping us to help her do things like get to the bathroom. My family moved to a new house while I was away at college, and Lily never quite seemed to learn her way around the place, depending on us to help her. Mom said that the first time Lily was in her new apartment, she actually crawled all over the place, exploring. More recently, Mom accompanied Lily and one of her assistants to the apartment from home after a shared meal, and Lily, immediately after being helped out of her wheelchair, bade farewell to her, saying she was tired, and headed off to her room…alone. It may seem like a small thing that she knows how to move around a relatively small space, but it means so much more than that.

I am deeply grateful to the three women who are her companions. I know that it’s a job, and they get paid for being there, and that they were carefully chosen as people who could be friends. But Lily is a rambunctious handful at best, and it takes a lot of talent and investment to be around her around the clock for people who haven’t known her all of her life.

Here’s to a first year of success for Lily! May there be many more to come!