Baby Monitors and Bathrooms

Since my mom is home now, things look a little different than when she was in the hospital. Gone are the days where she presses a button and a nurse comes to her bedside to help her. Instead we use a baby monitor. Gone are the days where the nurse helps her go to the bathroom. Instead I take off her pants and underwear and sit her on the toilet.

And it just feels so weird. She’s not a baby – she’s 56 years old – and yet here we are with a baby monitor. She’s not a child, and yet here we are helping her in the bathroom as if she was being potty trained.

My brain can’t process it, these conflicting age indicators. I can’t make sense of it. I’m stuck in this limbo of “this shouldn’t be happening” and “this is the way it is, so deal with it.” I’ll do anything for her, but it still just feels… weird. 

My Birthday

Next Wednesday I’m turning 25. And it’s going to be a really weird birthday.

Besides the fact that it might be my last birthday with my mom still alive, and the fact that its time for my quarter life crisis, I have to go to an appointment with my mom and my whole family to see the oncologist about her cancer.

A part of me doesn’t mind – I mean, it’s the only day the doctor could do it, it’s a really important appointment, and I would do anything for my mom. But a part of me wants to pretend that I’m three and throw a fit because something so shitty is happening on my special day.

Maybe I’ll just balance it out by having lots of fun surrounding my birthday? Any suggestions?

Back Home Again

My mom is now back home again. The blood-thinner treatment went well, and went quicker than they expected. The clots now seem to be gone, she’s out of pain, and there hasn’t been any extra bleeding in her brain.

She’s really, really glad to be home. Once we got home, she got all dramatic about how long she was in the hospital. “I was there FOR-EV-ER,” and so forth, even though she was only there for two nights. It was pretty entertaining. I bet she likes the hospital even less than I do. 

Blood Clots

My mom went into the ER yesterday. Her right leg (the one that can’t move much) was hurting, and the physical therapist that comes out to our house once a week decided that the pain might indicate a blood clot. So my mom went to the ER to have it checked.

After waiting for hours (as in nine hours), for some sort of scan, and then for the results, they decided that she did have blood clots in her leg. Which isn’t good. If they detach from where they are in her leg, they can make their way up to her heart, her lungs or her brain, and kill her, in a painful kind of way.  

So they had two options: surgically insert a filter into one of the large veins (or arteries, or whatever… I don’t know my anatomy) that goes into the heart, so that any clots that make their way up break apart; or they could pump her full of blood thinner to get rid of the clots immediately. With the filter, she’d still have pain in her leg, until the clots broke off and hit the filter (if they ever did). With the blood thinner, there was a concern that it would make her bleed more, which would be bad, since she already had the bleed in her brain, and because the cancer is very vascular.

They decided to do the blood thinner – her pain was pretty high (a 7 out of 10 on the pain chart. Yes, they really use this chart), and I guess there wasn’t any more of a risk with the blood thinner then there was inherently with the cancer. (Which is actually not reassuring – it just makes me more worried that another vessel is going to burst in her brain, and the slow death from cancer that we’ve been told will eventually come about will actually be a quick stroke-like thing again. I’d rather have slow and painless over quick and ugly.)

So now she’s in the hospital (her 4^th hospital since this started. We’re becoming real hospital connoisseurs) getting a strong Heparin drip, so getting blood thinner for 24 hours. She’s also getting some morphine to help with the pain in her leg. She should be back home again tomorrow night, if all goes well.

I visited her in the hospital today. I didn’t expect to hate going into the hospital as much as I did. I mean, aren’t I a hospital veteran now? Haven’t I seen it all? Aren’t I jaded and completely at ease? The answer to most of those questions is no. No, I’m not really a veteran, no I haven’t seen it all, and yes I am jaded, but I am not completely at ease. I am completely at un-ease. When I went into that hospital, I immediately felt more scared, more tense, and more on the verge of tears than I had been two seconds before when I was standing outside.  And seeing my mom in a hospital bed again, in the gleam of the ugly florescent lights? Fugeddaboutit (yes, I looked this up on Urban Dictionary to make sure I was spelling it right. I’m a nerd).

But the thing that’s even worse than the feeling of stepping foot in another hospital is realizing that things might end sooner than I expect. I mean, even though I know, as in logically know, that things could change in a second, that my mom could be dead in a second, I can’t get the rest of me to realize it. I can’t get the rest of me to stop planning for the next few months with my mom. I can’t get the rest of me to accept that something new and dramatic (as in bad dramatic) could happen each day. Maybe it’s a defense mechanism to keep me from making myself CRAZY with worry. Maybe I’m just in denial. Whatever it is, when something new (as in bad new) happens, its like I’m feeling the shock of the stroke all over again. I’m just never ready for any change (as in bad changes) in what has become the new normal of my life.

I was telling my therapist this today, and she said she thought of the image of me standing on the edge on a teeter-totter, trying to balance, and a big weight falling out of the sky and unbalancing everything. It felt like the most apt description ever. Every new thing (as in bad new) is a weight falling out of the sky, upsetting my very fragile balance that I’m trying desperately to keep. Maybe I need to learn gymnastics.  

A Good Month

Last Monday marked a month since my mom first had her stroke. I said to one of my friends that day “it’s a month today,” and she said “yes, but its been a good month.”

And it has. It has been a good month. It’s been an insane, unbelievable, life-altering month. But it has also been so good.

My mom went from possibly being a vegetable to being home, talking, able to move her right leg a bit, not needing a catheter, and eating real food. She went from understanding us only some of the time and sleeping most of the day to understanding us almost all the time and needing more to do during the day. And over this past month I’ve laughed more with my mom, shared more stories with my mom, and spent more time with my mom than I have in awhile.

And I’ve seen, maybe for the first time, how other people see my mom – how much they love her, how much she has made a quiet (and somewhat sassy!) impact on their lives, how she has loved people in her own way.

So yes, it’s been a good month. So far the hardest month of my life, but still good. 

No, I don't want to hear your "uplifting" stories

When people don’t know what to say about my mom’s cancer, they tell “uplifting” stories of how their daughter’s father’s best friend’s nephew was told he had such and such months to live, and then he lived ten years and is still going strong.

Though I understand how awkward this whole situation is to talk about, and though I know people are just trying to give us hope, those stories really aren’t helpful. More than anything, if I was to believe those stories, they would give me false hope. Yes, there is a possibility that my mom will live more than the year or so they expect her to. But if I hope for ten years instead of one, I’ll drive myself crazy, and fall even harder when she dies.

Instead, I’m happy to treat every day with her as sacred, in full knowledge that it may be my last day with her. And if she lives longer than we expect, then I’ll be thankful to have more sacred days with her. And when she dies, though my heart will break, and though my life will never be the same, and though I’ll be angry, and sad, and a thousand other emotions that words can’t express, I will know that my Jesus has her in his hands. And that is a hope that sustains, more than any uplifting story ever could. 

Home!

My mom is home! She came home on Wednesday. It’s a good thing, I promise – not because of any seizure, or because she wasn’t progressing, but just because her time at rehab was over. So it’s a natural home return.

It’s really nice for her to be home - nice that she’s not interrupted in the middle of the night by nurses taking her vital signs, nice that my dad doesn’t have to travel to see her, nice that she can just be in familiar surroundings, and not a hospital.

Though it’s also more work – there are no nurses to help her to the bathroom, to help her get dressed in the morning, to get her food ready. And it takes a lot of effort to do all those things, especially to get to the bathroom – a transfer from the chair to the wheelchair, wheel the wheelchair to the bathroom, a transfer from the wheelchair to the toilet, and back again. She said to me today, in a joking way, “it would be so much easier if I could do this on my own!” It definitely would.

The one really disappointing thing about being home: my sister’s dog doesn’t recognize her. Now, my mom, before all of this, took care of the dog a lot, when my sister was at work. My mom would pet her for hours, walk her, play with her, and the dog loved my mom. But now the dog just doesn’t realize it’s my mom, which is harder for her than she’ll admit: it’s an ever-constant reminder of how different she seems to other people (or dogs). I just hope the dog can learn to love her again, even if she isn’t the same. 

Therapy

Therapy rocks.

And no, I don’t mean physical, occupational, or speech therapy. I mean the counseling type of therapy. The go see a therapist once a week and talk about life kind of therapy.

I started going to therapy this past December, and it was one of the best decisions I ever made. I went initially to work through some of stuff I had never dealt with when it comes to my dad and his disability and chronic pain.

But I feel that with therapy, more stuff always comes up. So I also dealt with other losses that I’d never fully processed, and lies I had been believing about myself and about God. I slowly became (and I’m still becoming) who the Lord made me to be – I’ve started to find my identity.

Maybe I would have dealt with all my ish and become more me without therapy, but I kinda doubt it.

I know for sure that without therapy, I would be doing so much worse through all this stuff with my mom. One of my best friends said to me the other day “you’re handling this all much better than I expected you to,” and she was right. And the only reason, other than God’s grace, is therapy.

Sometimes I imagine how I would be handling all this with my mom if I hadn’t started going to therapy. I think I might either be (a) pretending it wasn’t happening, and living in denial (not a healthy response) or, (b) hiding in my room crying all the time (also not a healthy response). I know for sure that I wouldn’t feel comfortable enough to write this blog, or to ask my friends to help me pray, or to be in any way vulnerable with anyone else.

So, basically, therapy rocks.

And if you’re looking for a therapist in the East Bay, I know a really great one!

Gilmore Girls

Yes, you heard me right. Gilmore Girls. As in, the television show.

I love Gilmore Girls.

It’s on my all time best television show list, along with Scrubs and the West Wing. Like Scrubs and the West Wing, I can watch Gilmore Girls over and over and over again. It’s a comfort show that I will never grow tired of.

But right now, I don’t know if I’ll be able to watch it. I don’t know if I’ll be able to see Rory interact with her mom Lorelai.

Now, my mother is nothing like Lorelai, and my relationship with my mother is really nothing like Rory and Lorelai’s relationship. But it’s a mother and daughter thing, and I don’t know if I’ll be able to watch it without bawling. Even just the thought of watching it is too much.

I wonder if seeing all mother-daughter relationships is going to be this hard?

My Name

I’m on a work trip in Wisconsin this week, so I won’t be visiting the hospital to see my mom. Even though she really wants me to go off, and have fun this week, I can’t help myself – I need to call at least once a day, just to check in. Even though she doesn’t want me to worry, I think she likes it when I call.

I called my dad last night, and talked to him for awhile, and then had him pass the phone to my mom. We talked for a little bit – she gets clearer every day. This morning when I woke up I realized that last night on the phone, my mom said my name. For the first time since the stroke. My mom said my name.

My name is a little harder to say. Hard consonants, hard vowels. Even though its only two syllables, it takes a lot of effort to get your mouth around. So I wasn’t offended. (How could I be, when she was talking at all? Anything she said was amazing!)

But now my mom can call me by my name. And that is just beautiful.

The Phone

I talked to my mom on the phone today. The last time I did that, all I heard was silence. The last time I did that, she still couldn’t speak.

But today, she could! It was still a little weird – lots of yes or no questions, a few times where I couldn’t really understand what she was saying. She made some comment about pudding that she just couldn’t articulate, and that I couldn’t understand. But I could hear her on the other end, and I could talk with her, and that’s amazing.

And at the end, I distinctly heard her say “I love you, sweetie.” It may have sounded a little run together, and a little short on consonants, but it was beautiful just the same. 

I love you

My mom said, “I love you” today as I was leaving. She said, “I love you.” She said it, and I understood it. I didn’t know if I would ever hear her say that again. Thank you Jesus.

Being Strong

I’ve kinda been wondering why I’ve only really seen the happy side of my mom this whole time. All the time I spend with her she’s laughing, and in a good mood, and its all gravy. But I know she’s having these intense conversations with my dad about the cancer, and treatment, and all this stuff.  I know she cries, and gets overwhelmed, I just haven’t seen it yet.

But today my dad said something offhand, and it clarified things: my mom is being strong for my sister and I.

Even though my mom is lying in a bed all day, and even though I have to help her go to the bathroom, and even though I have to pick her up and move her from place to place, she’s still my mom. She will still always be my mom. She will still protect me, and want to keep me from getting hurt.

And so she will be strong for me and my sister. And I will let her do that, because I still want her to be my mom. 

An Epic Day

Today:

1. I learned how to transfer her from bed to wheelchair, wheelchair to car, basically anywhere to anywhere.
2. My mom can propel herself down the hallway in her wheelchair.
3. My mom moved her right foot during physical therapy.
4. My mom said more than a few words. She said phrases, lots of them.
5. My mom asked to go to the bathroom, and actually went to the bathroom, so far three times.
6. They switched her over to all pills instead of liquid, nasty tasting medicine.
7. The nurses took out the feeding tube!
8. I had my first conversation with my mom since this started.

How did this all happen in one day? I’m not really sure. But today was Family Training Day (Me, my sister and my dad, all being trained so we can take care of her when she gets home, even though we’ll also be hiring an in-home nurse). Maybe she was just trying to show off!  Maybe everything just clicked today. Whatever reason, I’ve been here since 8am this morning, walking with her through all her getting ready, her meals, her therapy sessions, and seeing improvements all day long.

So, how ‘bout I go through, and elaborate a bit, on all that happened?

1.) I learned how transfer her from one place to another. It entails her moving herself as much as she can, and me helping her as she pivots from one place to another. She does most of the work, I’m just there in case she loses her balance, and to guide her as she sits down. All transfers are basically the same, whether from the bed to the wheelchair, from the wheelchair to the car, or back to the bed. It’s even the same for getting on the shower bench she’ll be using.

2.) My mom can get along on her own in her wheelchair. I knew that she could, but I’d never seen it. She uses her left foot to steer herself, and her right hand to roll herself along. Sometimes she just likes to push herself along with her foot, but the physical therapist wants her to use her hand too. It’s not as fun as being pushed by my sister, who likes to make her swerve and goes really fast, but it works!

3.) My mom moved her right foot during physical therapy. Yes, that is the side she lost motion in. Apparently there’s some physical therapy technique where you work the strong side, and then the motion starts to spread to the weak side. And it worked! As they were working out her left leg, her right leg started moving. She was even able to press against a wall with her right foot, and move it up and down at the knee. She’s slowly getting back mobility.

4.) My mom spoke. A lot. “Thank you very much,” “I have to go to the bathroom,” and tons of other things. A lot of “yes,” “no,” and “okay,” too. The speech therapist asked her to use yes and no all the time, instead of just nodding or shaking her head. And she’s been doing it! Though sometimes it takes us asking her to speak so she remembers to vocalize. She rolls her eyes, but it’s worth it.

5.) My mom knew when she needed to go to the bathroom. She hasn’t been able to do that so far, which means she’s had to use diapers and short term catheters instead. Basically, she hasn’t had any control of her bowels up till now. But today, she said, in the middle of breakfast, “I have to go to the bathroom.” She has known that she had to go to the bathroom three times so far, and almost emptied her bladder each time. If she keeps this up, she won’t need any catheters, or suppositories, or anything, which will be great. It will keep her from the chance of infection each time the catheterize her, and will be so much easier when she comes home.

6.) They switched her over to pill forms of all her medication. Thank goodness! The last time she had to drink one of her meds, she almost threw up because of the taste. Since she’s able to swallow, she can do the pills. Thank you Nurse Francis. He was seriously the best nurse ever. He brought us extra juice, so me and my sister could have some. He was also a great teacher. And freaking hilarious.

7.) They took out the feeding tube! She’s been eating enough of her food, and drinking tons of water, so instead of having to put a new one in when hers got a little loose, they just took it out. She can now breathe out her nose, and my dad can kiss her more easily (ewwww, gross!).

8) I had my first conversation with my mom since this started! I mean we both talked to one another. She was able to articulate a question (with me asking a lot of clarifying questions until we got to the right thing) and we talked about stuff! It all started with her saying “men,” and then getting to the fact that she was talking about Francis, our awesome nurse, and finally figuring out that she was wondering about another training thing he had been talking about. It took awhile, and I made some ridiculous guesses about what she was saying, but it all worked out. 

And now, for a funny story: They have this “car” that they use to train people to get in and out of. It basically looks like the front seat of a dune buggy. After she got in and out of it a few times, she started motioning with her hand like she was driving, and making racing or rollercoaster-like noises. My sister, my dad, the physical therapist and I started throwing out guesses as to what she was talking about. We narrowed things down, tried to clarify, and basically settled on her question being “What do I do in the event of a zombie apocalypse?” (Okay, so we really just couldn’t figure it out. But the guessing process was super funny, and we were all laughing a lot.)

Later on, when we were back in her room, she started making the same motion again. So I went back through the possibilities. Yes, she was talking about being in a car. No, it wasn’t parked, but it wasn’t really driving either. And it was like a racecar, or a rollercoaster. A rollercoaster. A rollercoaster that looked like a dune buggy. Indiana Jones! She was talking about the car being like the Indiana Jones ride that we had just been gone on at the end of July in Disneyland! It was pretty hilarious when I finally realized what she was talking about, and it was great that she remembered our trip to Disneyland, and that we had gone on the Indiana Jones ride.

So yes, an epic day. Probably the best day here ever. 

Popular

My mom is super popular. She got SO MANY CARDS today. Probably about 30. I’m not kidding.

It’s pretty cool to see how many people my mom is important to. She’s a very introverted person, and she’s my mom, so I don’t think I ever really knew. But people really like her.

If you’ve sent her a card, or flowers, or a gift, thank you. She really loves to get them, and its beautiful to see how much she is loved. 

Decisions

I am really bad at making decisions.

I was never the biggest fan of making decisions – never wanting to offend, and honestly not caring too strongly about some things. But after everything that’s happened with my mom, I’ve gotten even worse.

Most of the time, they’re small decisions. I balk at choosing coffee shops, or deciding what to eat for lunch. Though of course those big looming decisions (what I’m going to do after my internship, what I want to do with my life) that I’m avoiding aren’t any easier to make either.

So friends, one of the best ways to care for me during this time is to allow me to not make decisions. Just decide for me. If I have a strong opinion about something, I’ll let you know. Otherwise, assume I just don’t have a preference.   

Eating Real Food

For the past two days, my mom has been eating real food. No, they still haven’t taken out the feeding tube. But they haven’t been using it. Instead she’s been eating her meals, by herself, breakfast, lunch and dinner. Yay!

Granted, it’s not the tastiest. Everything is a “soufflé.” Which means ground up and re-formed into a soft mass that she can easily chew. Turkey soufflé, chicken soufflé, who-knows-what-else-is-really-in-the-meat-dish soufflé.

And pureed fruit, and mashed potatoes or yams. And lots of juice, to make the meal bearable. And pudding! Though yesterday they forgot to give her her pudding, which is just a travesty. The pudding is the best part of the meal, and the only thing that makes it worth eating. (I ate her leftover pudding today. Seriously, pudding is one of the best food items in the hospital.)

They should be taking out the feeding tube soon, since she hasn’t been choking on any of the food. She can even drink water on her own (no, we’re not just sneaking it to her anymore).

I just hope they don’t forget the pudding again.

Missing my mom

On Friday I didn’t make the 45 minute drive to Vallejo to visit my mom – I worked a full day (first time in three weeks. My bosses are pretty much awesome), didn’t want to be stuck in traffic and have the 45 minute drive turn into 1.5 hours, and just needed a night off. It was a really fun night too – hanging out with friends, being ridiculous, the usual.

But while I was hanging out with my friends, I realized – I really missed my mom.

Now, I’m not someone who misses her parents very often. Even when I’m out of the country for the summer, I rarely get homesick. And after I left for college, I would talk to my parents about once a week, maybe less, and mostly about random questions I had, things like how to cook a certain dish, or where to get car insurance.

So missing my mom on Friday, when I had just seen her the day before, was a little weird for me.

I don’t know why I miss her so much more now. Maybe its because we only have so much time left together. Maybe its because she just seems so vulnerable, sitting in that hospital bed, unable to speak. Whatever the reason, its not an unwelcome emotion, to miss my mom, just unexpected.

"What was that all about?"

My mom forgot she had cancer.

Or at least she forgot that it was terminal. Some people came in today to talk about different after-rehab options, and specifically Hospice, and after they left, she basically asked my dad “what was that all about.” So he told her, everything, for the second time.

The first time he told her about the cancer, about a week and a half ago, she was just really quiet. This time she cried, and cried, and cried.

I don’t know if she completely forgot she had cancer. We talked to the doctor today, the one in charge of her rehab, and she said that every morning she talks to my mom about her brain tumor, and why they’re doing rehab, and all that stuff. Which is great – she said she does it because we shouldn’t have to be the ones to do it.

But maybe my mom just thought that she could beat this cancer, just like she did her breast cancer. Maybe she thought the tumor was just a benign tumor, that wasn’t really going to affect anything, but just caused a stroke. Or maybe she really did forget.

I just can’t imagine what its like to find out, after a week or so of working hard in rehab, that its not going to be enough to get life back to normal, or even closer to normal. I can’t imagine what its like to find out (again) that you’re not going to grow old with your husband, or see your daughters grow up, and then still work hard at getting better anyway.

I just really hope she remembers this time. She needs to know, and I don’t want my dad to have to go through telling her again. 

Seizure, Part 2

My mom had another seizure yesterday. Or at least we think it was a seizure. We’ll be more sure tomorrow, once we talk to the doctor about her EEG and MRI results. We’re really hoping it’s a seizure (what? Hoping for a seizure?) because if its not, it could be a lot of other things, all which are worse than a seizure. I can’t remember what they are exactly, but they wouldn’t be good.

She had the seizure at about 1:30pm yesterday afternoon. She was on this contraption my dad likes to call the Frankenstein machine – it makes her stand up, and they can wheel her around standing up on it, if they want. They use it to take her to the bathroom and stuff, and it somehow sits her down too, or something. I’ve never seen it, but it sounds a little weird. The nurses sometimes leave her on this contraption in the bathroom for about 10 minutes at a time.

Anyway, she was on the Frankenstein machine, in the bathroom, when the nurse found her, hanging on this contraption by her armpits. The nurse called for help, and my dad was in the room, and rushed to help. Now, if you remember, my dad can’t really walk, and he definitely shouldn’t be lifting things, so that probably didn’t work too well. They were finally able to get another nurse to help get her into a wheelchair, and then back into bed.

When she got into bed, she was non-responsive. So that was scary. Then, she started to look like she was swallowing over and over again, and my dad quickly turned her on her side, and then she vomited. (The number of times my dad’s random nurse-like knowledge that he gained from helping his mom quiz for her RN classes when he was in high school has come in handy is unbelievable.)

They cleaned her up, and took her down for an EEG (though I guess she vomited again either before or after the EEG). She was responsive again when they brought her back up to the room, but super tired.

The doctor says that the seizure was caused by the cancer. Not by the stroke, or the trauma of the bleeding, or even from having her in the Frankenstein machine. The seizure was caused by the cancer. Which means they may just keep coming. And it means that if they do keep coming, she won’t be able to stay in rehab.

We thought we had a little more time, before the cancer really took hold. I guess we don’t.

Cancer Sucks

Cancer sucks.

Cancer runs in my family. Breast cancer especially. My great-aunt, my grandma, my aunt, and my mom all had breast cancer. My aunt died of breast cancer that spread to her bones, a week before I was born. For me, cancer means getting mammograms and wondering who’s next.

But cancer hasn’t only hit my mom’s side of the family. On my dad’s side, my grandma died of colon cancer, and my grandpa died of lung cancer. Even my step-grandma (the lovely woman my grandpa married after my grandma’s death) has cancer – breast cancer.

And my apartment, well, we call ourselves the Library, but sometimes we wonder if we should call ourselves the Cancer Corner. We all have immediate family members who have cancer.

If cancer was a person, I’d punch it in the face. Or dropkick it. Since it’s a disease, all I can say is…

Cancer sucks.

Not a Child

The picture of my mom that keeps sticking in my head, the one that makes me curl up in a ball on the couch, crying my eyes out, is this:

My mom, sitting in her wheelchair, exhausted from a full day of therapy. She looks, with trust and determination, at the speech therapist, who is mouthing out “Row, Row, Row Your Boat.” My mom tries to do the same – her forehead scrunched with effort, though her face still looks simple. She gets out the vowels, vocalized the melody, and tries to correctly form her lips and tongue, but still misses all of the consonants.

She looks like a child, sounds like a child, as if she was first learning to speak, and trying to imitate her mother.

But she’s not a child – she’s 56 years old, and she used to be able to speak.

It shouldn’t be like this. I shouldn’t have to see my mom relearning how to speak, relearning how to sing “Row, Row, Row Your Boat.” I shouldn’t have to see my mom trying so hard to do something that used to be so easy.

She looked so innocent, so earnest. So much like a child, it scared me.

p.s.  I know this post might seem like it contradicts my previous excitement of her singing “Row, Row, Row Your Boat” (which, by the way, needs a way shorter name), but it really doesn’t, at least not in my head. A part of me is really excited that she can sing it, but the other part of me feels like this. Expect more contradictions in the future – I certainly feel like I’m full of them.

The Future

I really don’t know what my future is going to look like.

I mean, I didn’t really before, but now I really don’t. All of my plans, or ideas for plans, or inklings of ideas for plans, have gone out the window.

I thought that after the Servant Partners internship, I would stay in Oakland for a little while, but then soon after I would go work with Servant Partners in a slum community overseas, or move to an inner-city church plant in LA, or something.

But now I don’t even know what this last year of the internship will look like. I keep wondering: how much time will I spend in Oakland? How often with I go back to San Jose to help take care of my mom? How much care will she need when she gets done with rehab?

And: will she decide to do chemo and radiation? Or will she forgo treatment? Will she even be alive a year from now?

What I do know is that I want to be close until she dies. I don’t want to be in another country, or even in another part of the state, until I’ve gotten to spend as much time as I can with my mom.

I really felt Jesus asking me recently, before the stroke: “If all you plans fail – if you never go and work in ministry overseas, if you never get married, will I still be enough? Will my love for you still be enough?” And I’ve been able, with some effort, and some letting go of all my well-crafted plans for myself, to say yes. Yes, Jesus, you are enough. No, my faith and my walk with you do not depend on how well you fulfill the plans I’ve created for myself.

And I still say that now – yes, Jesus, you are enough. I just never expected to have my plans changed like this. 

How is your mom today?

She’s doing well today, thanks for asking.

When I got to the hospital, my dad was still at home, working on finances and things (my mom used to do all the bills and such, so my dad is wading through all her paperwork and trying to figure out her system). So I got to have a couple of hours with just me and my mom.

She actually wasn’t in the room when I got there – she was still at speech therapy. When she came back, the speech therapist told me some of her improvements for the day. Today she:

• ate the first real food she’s had since this started. She ate some banana, some bread, and some pudding. She said the pudding was especially good.
• swallowed small sips of water without coughing.
• learned how to say the vowels “a,” “o” and “e.”
• sang “Row, Row, Row Your Boat.” When I say sang, I mean kinda vocalized the vowels and the melody, and moved her mouth to imitate the speech therapist a little bit.

That is really, really good progress for a day’s work. It also means she might be off the feeding tube and on real food in the next few days, which I know she would absolutely love. Apparently feeding tubes are really uncomfortable. Who knew it wasn’t pleasant to have a tube through your nose and down the back of your throat?

After all of that (and all the physical and occupational therapy she also went through today) she was pretty tired, but I still got to spend a few hours telling her stories. It was fun to just talk with her, to hear her occasionally say words (she said “nice” and “yes” today, and I mean she actually said those words). She also tried to talk a lot more, and kept wanting to say things, but it mostly came out as random vowel sounds. It was great to hear her trying to speak, but also a little hard, for both of us, because I just couldn’t understand her.

I also snuck her some water, and some of my ice cream bar. I blame her – she’s very persuasive when it comes to getting us to break the rules for her. But with both the water and the ice cream, she was able to drink and eat and swallow everything without a problem, which was amazing. And funny – especially since we may have gotten some clandestine ice cream on her blanket… 

A Good Day

Today was a good day.

So good, in fact, that if you had asked me how I was doing, I would have said, “I’m doing well.” I think today is the first day I could honestly say that.

Why was it a good day? I slept in, had a nice, lazy morning with some friends, listened to good music on my drive, visited my mom, told her some stories, read a book, talked with my good friend on the drive back from the hospital, got caught in no traffic, hung out with more friends and watched a good movie.

There was nothing spectacular that happened, no ridiculous antics (well, not too many) and no epic adventures. Just simple, beautiful moments that made me smile.

I thought I would always have this pall over me, the reminder of the stroke, or of the cancer. Almost like a fog, graying out all the color in life.

But one thing my friend said to me, that she learned when her mom first got sick was, “you can’t let cancer dictate how your day is going.”

And that idea, that freedom to be however I want to be, cancer or not, stroke or not, has stuck with me, and allowed me to have a good day today. I am free to be me, Katye, beloved by God. And I’m free to be me, Katye, who loves impromptu breakfast hangouts, sitting around in PJ’s and drinking good coffee. Katye, who loves discovering new music and rocking out as she glides down the freeway. Katye, who can’t resist telling her mom ridiculous stories, and making her mom laugh. Katye, who loves to get lost in a good book. Katye, who has amazing friends who make her laugh, and have the same thoughts as she does. Katye, who is a sucker for a good, cheesy movie. Yes, the cancer is still there. Yes, the stroke still happened. But that doesn’t make the rest of me, the rest of my life, less real, or less wonderful.

And so, I say, I had a good day.  

Prayer Changes Things

My mom has this little notepad that all flowery and petite, and says across the top “Prayer Changes Things.” I used it to write down the messages that had been left on our home phone. I also may have used it to write down directions to somewhere. Whatever I used it for, the somewhat cheesy sentiment stayed in my head.

The second thing I did when I found out my mom had a stroke, after waking up my roommates and crying a bit, was ask them to pray. I certainly couldn’t pray for my mom right then – I was in too much shock. But I asked them to pray, and asked them to tell the rest of my internship team what was going on, so they could pray, too.

And then, on the car ride to the hospital (thanks roomie for driving me!) I called a lot of other close friends to tell them what had happened, and to ask them to pray too, (sorry for waking you all up super early in the morning) and to ask them to pass along what was going on to more people, so more people would be praying. And I kept sending out email updates, with more and more prayer requests.

Most of the time right now, I can barely pray. The only prayers I’ve really been able to handle have been “please” (in other words, please heal my mom), and “thank you Jesus, you are my rock.” I’ve tried “thank you Jesus, you are her healer,” but that prayer has almost felt mocking for the past week or so, so I stopped trying to fake it.

But even though I can barely pray, I know that prayer changes things. Even though my mom’s prognosis seems set and immovable, I know that prayer changes things. And so I have my friends pray for what I just can’t pray for right now, in the hope that things will change.

Thank you, friends, for praying. Please don’t stop.   

Seizure

Saturday night I got a call from my dad at about 10pm.

My first thought was: oh shit.

I mean, 10 at night – it’s a little late for my dad to just call to say hello. Nighttime phone calls scare me.

He told me that my mom had had a seizure. I guess at about 7pm, she grabbed her chest and just looked like she was in pain. He asked her if she was hurting, and she said yes, and she kept grabbing her head, and her chest, and just looking horrible.

He called the nurse over, and told her something was wrong with my mom. The nurse agreed. (She’s been with my mom for a few nights over the last week, so she knows what normal looks like. This was not normal.) The nurse called the charge nurse, and the doctor. The charge nurse came, and the doctor called – neither were convinced that something was wrong. Even as my mom is sitting, in pain, unable to do anything about it. They didn’t believe it. Maybe because she couldn’t scream.

My dad thought she might be having another stroke. He said she looked almost the same as when the stroke happened. I can’t imagine how scary that must have been – reliving the worst moment of your life.

The doctor and the charge nurse finally started to think things weren’t normal, and agreed to run some tests, and to do a CT scan, to make sure there wasn’t any more brain bleeding. By the time she came back from the CT scan, she was asleep, but my dad woke her up to see if she was still in pain, and she said she felt better.

The CT scan didn’t show anything, so the doctor decided that it was probably a seizure, which only shows on a CT scan for a little bit of time, and then goes away. There was no more bleeding (thank goodness).

The next day she was feeling a whole lot better. Still tired, but that probably was more from a full week of therapy, rather than the seizure. They increased her anti-seizure medication, too, so hopefully that will keep her from having another one.

I just wish there were no more surprises. I really hoped that during these weeks of therapy, everything would at least be stable, without having to worry about the cancer or anything else for a little while. But I guess things aren’t as stable and predictable and controllable as I was hoping for.  

Communion

Yesterday I went to church, and we took communion. I took the bread, and as I was dipping it in the juice, the communion steward said, “Katye, this is Jesus blood, shed for you.” It was said so tenderly and with such love that I realized that it really was – Jesus’ blood, shed for me.

For me. Not just for us as a church, as a people of God. But for me.

And Jesus loves me. He loves me. I am his beloved. His body and his blood, they are the best reminder of his sacrifice of love for me.

I guess I really, really needed to hear that, to know that again. It’s not that I didn’t know that in my head, or that I ever really doubted it, but I think somewhere in my soul I wondered – with all this happening, all this crappiness, am I really loved? Or has he abandoned me?

But yesterday, through communion, I knew again: I am loved.

And every week, through communion, I can know again: I am loved. 

Nighttime

Why is it that everything hits me at night?

Last night, I had a really hard time falling asleep. I kept reliving everything in my head: waking up in the middle of the night, seeing that my dad had called me at a crazy hour, calling him back, hearing him tell me my mom had had a stroke.

And then, the moment that really sticks, the one that really kept me awake: waking up my roommate in the wee hours of the morning, telling her my mom had a stroke, breaking down, crying in her arms. I think that’s when I finally processed the phone call, when it all became real.

So as I fall asleep, all I can do is picture that moment, over and over again. It makes it hard to sleep in my room, since I can see where I was standing when it happened.

I don’t know why it only hits me at night. Maybe that’s just the time when my mind finally slows down, or maybe its when I can hide from other people the best. Maybe I need to process and deal with that moment, or maybe my mind is just being mean to me. A part of me thinks going through it again might be helpful, trying to see where Jesus is in it, but another part of me never wants to have to feel that way again.

And a part of me just wants someone to put their arms around me and tell me everything’s going to be okay. 

The Laugh

Today I heard my mom laugh. Yes, that’s right folks, I HEARD her laugh. Once more for emphasis: I heard her laugh.

She doesn’t vocalize every time she laughs, but she’s starting to. Every so often, when she’s making one of her faces, or moving her mouth, she’ll make a sound. I think I may have even heard her say “ooh” after we said something ridiculous.

She also sat up in a wheelchair today, without needing any neck support. So that’s good.

And she convinced my dad to sneak her some water (she still can’t swallow consistently, so she’s not supposed to have water, or even ice chips).  My dad said she had been drinking sips of it pretty well until I got there. The few times she tried it while I was there, she started to cough, so no more water for her. We don’t want her to aspirate (get liquid in her lungs, and then possibly get pneumonia). Though I’m sure her throat is super dry, she’ll just have to wait until it’s safe. She’s a little resistant, but I think my dad convinced her.

And tonight, when I said goodnight, she kissed me on the cheek. 

Waves of Grief

I always thought the phrase “waves of grief” was just an artistic way to talk about mourning. It sounds good, it’s descriptive, it’s a little overused. But hey, why not? Cliché or not, it sounds pretty.

But today I learned why people use “waves of grief.” Because they’re real.

I was just sitting, looking out at the grass, and everything slowed down. And then, out of nowhere, this feeling of grief came like a wave –growing bigger and bigger, and then the crest with eyes welling up, and then the slow receding of the tide, of the intensity of the sadness, and then back to normal, back to looking out at the grass.

It felt like a wave. And you know what they say, if it looks like a wave, and walks like a wave, then it must be… a duck! No, a wave, silly.

So, waves of grief. Not just a figure of speech, not simply an artistic phrase. A true way to characterize mourning. 

Silence

Today is the first day since the stroke that I haven’t seen my mom. It’s a little weird, but not as weird as I thought it would be. It actually feels more normal – back to the way things were before.

I’m really glad I decided to stay in Oakland today – not because I don’t want to see my mom, but because I’m tired. And I really wanted to spend the evening with my roommates, just chilling at this adorable house with a backyard and two cats that my roommate is cat-sitting.

I called my dad, just to check in. He was sitting in the hospital room with my mom, so we chatted for a little bit, and then I said “alright, Dad, I’ll see you tomorrow, tell Mama that I love her,” and he said “why don’t you tell her yourself?”

So he put the phone up to her ear, and I told my mom I loved her, and that I would see her tomorrow. And then I waited, awkwardly, in the silence. I tried to say a few other things like “I hope you sleep well” and “I hope therapy went well today” but there wasn’t much I could do to not feel awkward. After awhile I said “Dad?” hoping he would hear and take the phone back.

He did. He said she was blowing kisses in the air to me.

It’s not as big a deal that my mom can’t talk when I’m there in the room with her, able to read her facial expressions, see her nods, and interpret her hand squeezes. But tonight the fact that she can’t speak became real. Tonight I realized what not living at home is going to mean if she can never speak. Tonight I realized how horrible silence can be.