Happy Mother’s Day 2015!

 Mother’s Day is this Sunday, May 10.  Please plan accordingly.

[Originally Posted May 8, 2014]

June 27, 2011 – my first week at home

It’s almost Mother’s Day …! I am preparing to be back next week. I’ve had a nice rest here at Ai Ai and Tim’s house. We flew here straight from PDX. My parents and I visited Portland April 1-7 for the first time since I got sick, so that’s why I was so stressed out and signed off in March and why Mommy|Daddy dropped me off here with my sister.

Remember how I said I was getting jumpier as time wore on before my break? Well one night I was brushing my teeth and my hearing/vision changes made me unaware of Mommy’s gentle knock on my bedroom door and the whistling sound she makes to let me know she’s approaching. I almost jumped out of my skin, and when she got me to stop shrieking she told me that she was sending me to Boo Boo’s before this got any worse. (Side note: I apologize if I have not responded to an email or other form of communication from you. My track record in my Old Life was not good in this area either. My bad.)

So I informed Ai Ai that Ed Blueberry and I needed to come see her after my Portland trip. It worked out great bc we were able to give a legitimate reason for flying in to see them when Timmy hatched a plan for a surprise birthday brunch. So Mom and Dad stayed for that but they’ve been home in MD for a while. I spent the first couple of weeks here sleeping and resting, but I’ve recently started getting into the swing of things with exercising, doing some things around the house, trying to keep up with all the school activities, etc.

My removal to Boo Boo’s house is working – I am less stressed, especially after the Portland trip, and have been itching to write and work. One day I sat on the recumbent bike at my sister’s gym and planned my blog through late June. Sadly, although I have great plans, execution remains a problem area for me. Dictation software will not help – I’ve tried it. I have voice and stamina issues, remember? What I really need is mind-reading software bc I sound really great in my head but getting it out verbally or in writing is a real challenge.

But I really just need to do things one step at a time. So for now that means preparing for Mother’s Day. I’ve told Mommy that if she and Dad hadn’t been at the hospital when I woke up I don’t know what I would have done. I’ve also noted that if Mommy and I hadn’t been friends in my Old Life I’d be sunk now. Seriously, I had visions of me taking her to Nordy Café when we were both older, and just cruising around town like we did when I was growing up. That dream came true, except she chauffers me around – and when we’re not at rehab, acupuncture, or a gym, we’re running errands at the mall, the supermarket, Costco, Target – all of our old haunts. These are the little things our lives are made up of – and as we plow through the mundane tasks before us my insides are healing in an extraordinary way.

I love you, Mom! Xoxoxo

 

52.   Will You Take Care of Me?

This is how Mommy takes care of me – comfort food!

(Originally posted 11.29.12) I had a few minutes after VT yesterday so I sat down and read a book.  Childrens’ books generally have large print so they are easier for me to read.  Plus they are heavy on the pictures, which I also like.  The clientele is often pediatric, so the waiting room has a bunch of books and puzzles for kids.  I picked up a hardback picture book called Will You Take Care of Me? (Bridges & Sweet, Harper Collins 1998).  The premise is that a mommy kangaroo and her baby are on their way home. On the way, the baby kangaroo asks a series of questions, e.g. “If I turned into an XYZ would you take care of me?”  The baby imagines turning into many things, including an apple tree, a bicycle and a bar of soap, and each time the mommy responds with some appropriately witty answer that indicates she’ll always take care of the baby no matter what.

At the end of the book the little kangaroo asks, “What if I became a baby again?” – would his mom redo the hard work of caring for an infant?  Of course the mommy answers with a resounding “Yes” and I was ready to bawl at that point.  Thankfully my own Mommy came in the door at that moment so I distracted myself with putting on my coat and getting into the chair lift.

The reason why that book made me sad was because that’s what happened to me.  I was 30 years old, able to support myself and live independently, and then all of a sudden I became a baby again and my parents had to move to OR and do everything for me.  I’ve asked Mommy about it, and she kind of shrugged and told me, You’re our child.  Where else would we be?

Many people might agree and think that what my parents did was an ordinary and expectable response.  Based on what I’ve heard about parenthood, perhaps others would have done the same thing.  I’m just pointing out that my parents rearranged their lives to move to OR for a few months, then kept on rearranging them so I could move back in with them.  Naturally, it’s hard for me sometimes since I’m an adult and was used to living in absolute independence, but I gratefully acknowledge the backbreaking work my parents have put in to take care of me, a very large “infant,” since I’m physically unable to care for myself.

Since it was unknown when I’d wake up, Mom and Dad just waited by my bedside for over a month.  “Wasn’t that boring?” I asked one day.  Mommy didn’t even dignify my question with a response.  She just made a sound like, Pshaw.  The sameness was made bearable by the expectation that one day I would wake up, so they waited patiently.  Spoiler Alert:  I woke up and gave lots of people a (mildly) hard time. 

What happened to me was sudden, meaning there was a point in time that marked my transformation from independent to disabled person.  But there are many folks who face a life of caring for a child with special needs from the point of birth.  The road can seem awfully long and I applaud those parents who care for kids like this on a daily basis.  I also take my hat off to the grandparents who spend their golden years raising their grandchildren for whatever reason, but I digress.

When I was in OR I got to know a family with 2 daughters.  Our care group met at their house and the dad was the ringleader.  He also happened to work in the group I interned for in 2008.  The eldest (K) has special needs and will likely require care for the rest of her life, and the youngest (B) is currently away at college.  I got to know them both, and got along with K since I thought we were very alike (more so now that my filter is compromised), and I was also like B in that we both tend to work/study a lot.  Maybe a bit too much.  Their mom told me once that sometimes it might be hard to face a lifetime of care (when the normal way of things is to be an empty nester and eventually spoil grandkids) but in the perspective of eternity this life was actually very brief, and her expectation was that God would eventually make everything okay.  This thought took hold of me and gave me the perspective/courage I needed to leave my family and move to Africa.

I also know a family here in the D.C. area with 4 kids.  The eldest has Down’s and is a complete riot.  I only met her once, but I still hear stories about her that make me laugh.  When she was born people understandably struggled to find the right thing to say.  Some of the comments were a little too pitying to be encouraging, though, making her father glad that he was/is her dad, not anyone else.  Thankfully,  the Lord knows where to put kids like us.

419. Nothing Happened

At the Hillsboro Library before I got sick.

I’ve realized that although I thought I was pretty “with it” when we came home I actually blocked most of that first 6-12 months at home out. This is probably my brain’s own defense mechanism since as Mommy says, I don’t need to remember all that – I wasn’t allowed to get out of bed into my wheelchair, dress, use the restroom, or bathe by myself.

When I was discharged from RIO I told Mommy gleefully, Now we can do WHATEVER we want!!!

Yeah, no, that’s actually not what that means, she replied.

The first time I took a shower by myself I waited until she was on the phone long-distance and snuck in to the bathroom. I got in big trouble. But let the record show that I didn’t fall down!

If nothing happened, that makes it okay, right, M (my partner in crime)?

Last week I almost fell off a table at The Running Gym. Poor Coach R, after telling me to stay still and verifying that I was stable, had turned around for one second to get something for my leg and I shifted my weight unsuccessfully. (Yes, I almost fell and I was already lying down. Welcome to my world. PS. I think all the tables at the Running Gym are very narrow.)

I gasped but started laughing hysterically – Don’t worry! Nothing happened, R – this is COMPLETLEY under control.

Coach R: Don’t DO that!! My heart rate just skyrocketed.

Me (to the lady on the next table): I was just checking to see if he was paying attention.

Yeah, he was paying attention. Also, my right forearm has been acting up (Mommy says it’s bc I keep a death grip on my cane) so Leo has been on vacation. This, in combination with my better-but-still-wrapped ankle, makes Coach R nervous. So he pretended to be my assistive device for my entire session on Thursday. I guess the table incident didn’t boost his confidence. But I’m just saying he’s a lot nicer than, oooh, say…..M37. That’s right, M37 – I totally just said that out loud. Incidentally I saw M37 a couple weeks ago and as we walked to the front door I very gingerly put a forefinger out to balance myself.

I see you touching that wall, she said. Some things don’t change.

In other news, I recently managed to light a piece of toast on fire. It was a small piece of gluten free bread that slipped through the grill in the toaster oven when I had a motor skill malfunction with the chopsticks I was using to remove it from the machine. (See that, Boo Boo? They were wooden chopsticks.) Let the record show that it was a teeny tiny flame. I managed to rectify the situation without incident. More accurately stated, the flame extinguished itself while I wiggled around, hoping to block it from view. Don’t worry, nothing’s happening! I assured Mommy as I hastily bustled around that corner of the kitchen.

I then proceeded to fall into the laundry room closet that evening when I was practicing my ADL’s. I might have screamed a little. But I caught myself, or the clothes in the closet caught me, and I called out to Mommy, Don’t worry, I’m fine – but I stood still for a few minutes, eyes moving shiftily even though I was alone, waiting to hear her footsteps. Sure enough, she appeared within seconds to verify that I was indeed okay. I said nothing happened, I laughed when I saw her.

Mm hmm… Mommy is not overly convinced by my assurances. I guess she figured out pretty soon after we came home that I have a stubborn and sneaky streak I managed to keep under wraps for 30 years. Well, it’s all out in the open, now, and I thank the Lord that I have come to no harm considering the tricks I’ve pulled in RecoveryLand, and the magnitude of my deficits, even though I do my best to keep them on the DL.

Happy Mother’s Day!

 

June 27, 2011 – my first week at home

It’s almost Mother’s Day – it’s this Sunday, the 11^th, so plan accordingly – but hustle! I am preparing to be back next week. I’ve had a nice rest here at Ai Ai and Tim’s house. We flew here straight from PDX. My parents and I visited Portland April 1-7 for the first time since I got sick, so that’s why I was so stressed out and signed off in March and why Mommy|Daddy dropped me off here with my sister.

Remember how I said I was getting jumpier as time wore on before my break? Well one night I was brushing my teeth and my hearing/vision changes made me unaware of Mommy’s gentle knock on my bedroom door and the whistling sound she makes to let me know she’s approaching. I almost jumped out of my skin, and when she got me to stop shrieking she told me that she was sending me to Boo Boo’s before this got any worse. (Side note: I apologize if I have not responded to an email or other form of communication from you. My track record in my Old Life was not good in this area either. My bad.)

So I informed Ai Ai that Ed Blueberry and I needed to come see her after my Portland trip. It worked out great bc we were able to give a legitimate reason for flying in to see them when Timmy hatched a plan for a surprise birthday brunch. So Mom and Dad stayed for that but they’ve been home in MD for a while. I spent the first couple of weeks here sleeping and resting, but I’ve recently started getting into the swing of things with exercising, doing some things around the house, trying to keep up with all the school activities, etc.

My removal to Boo Boo’s house is working – I am less stressed, especially after the Portland trip, and have been itching to write and work. One day I sat on the recumbent bike at my sister’s gym and planned my blog through late June. Sadly, although I have great plans, execution remains a problem area for me. Dictation software will not help – I’ve tried it. I have voice and stamina issues, remember? What I really need is mind-reading software bc I sound really great in my head but getting it out verbally or in writing is a real challenge.

But I really just need to do things one step at a time. So for now that means preparing for Mother’s Day. I’ve told Mommy that if she and Dad hadn’t been at the hospital when I woke up I don’t know what I would have done. I’ve also noted that if Mommy and I hadn’t been friends in my Old Life I’d be sunk now. Seriously, I had visions of me taking her to Nordy Café when we were both older, and just cruising around town like we did when I was growing up. That dream came true, except she chauffers me around – and when we’re not at rehab, acupuncture, or a gym, we’re running errands at the mall, the supermarket, Costco, Target – all of our old haunts. These are the little things our lives are made up of – and as we plow through the mundane tasks before us my insides are healing in an extraordinary way.

I love you, Mom! Xoxoxo

 

52.   Will You Take Care of Me?

This is how Mommy takes care of me – comfort food!

(Originally posted 11.29.12) I had a few minutes after VT yesterday so I sat down and read a book.  Childrens’ books generally have large print so they are easier for me to read.  Plus they are heavy on the pictures, which I also like.  The clientele is often pediatric, so the waiting room has a bunch of books and puzzles for kids.  I picked up a hardback picture book called Will You Take Care of Me? (Bridges & Sweet, Harper Collins 1998).  The premise is that a mommy kangaroo and her baby are on their way home. On the way, the baby kangaroo asks a series of questions, e.g. “If I turned into an XYZ would you take care of me?”  The baby imagines turning into many things, including an apple tree, a bicycle and a bar of soap, and each time the mommy responds with some appropriately witty answer that indicates she’ll always take care of the baby no matter what.

At the end of the book the little kangaroo asks, “What if I became a baby again?” – would his mom redo the hard work of caring for an infant?  Of course the mommy answers with a resounding “Yes” and I was ready to bawl at that point.  Thankfully my own Mommy came in the door at that moment so I distracted myself with putting on my coat and getting into the chair lift.

The reason why that book made me sad was because that’s what happened to me.  I was 30 years old, able to support myself and live independently, and then all of a sudden I became a baby again and my parents had to move to OR and do everything for me.  I’ve asked Mommy about it, and she kind of shrugged and told me, You’re our child.  Where else would we be?

Many people might agree and think that what my parents did was an ordinary and expectable response.  Based on what I’ve heard about parenthood, perhaps others would have done the same thing.  I’m just pointing out that my parents rearranged their lives to move to OR for a few months, then kept on rearranging them so I could move back in with them.  Naturally, it’s hard for me sometimes since I’m an adult and was used to living in absolute independence, but I gratefully acknowledge the backbreaking work my parents have put in to take care of me, a very large “infant,” since I’m physically unable to care for myself.

Since it was unknown when I’d wake up, Mom and Dad just waited by my bedside for over a month.  “Wasn’t that boring?” I asked one day.  Mommy didn’t even dignify my question with a response.  She just made a sound like, Pshaw.  The sameness was made bearable by the expectation that one day I would wake up, so they waited patiently.  Spoiler Alert:  I woke up and gave lots of people a (mildly) hard time. 

What happened to me was sudden, meaning there was a point in time that marked my transformation from independent to disabled person.  But there are many folks who face a life of caring for a child with special needs from the point of birth.  The road can seem awfully long and I applaud those parents who care for kids like this on a daily basis.  I also take my hat off to the grandparents who spend their golden years raising their grandchildren for whatever reason, but I digress.

When I was in OR I got to know a family with 2 daughters.  Our care group met at their house and the dad was the ringleader.  He also happened to work in the group I interned for in 2008.  The eldest (K) has special needs and will likely require care for the rest of her life, and the youngest (B) is currently away at college.  I got to know them both, and got along with K since I thought we were very alike (more so now that my filter is compromised), and I was also like B in that we both tend to work/study a lot.  Maybe a bit too much.  Their mom told me once that sometimes it might be hard to face a lifetime of care (when the normal way of things is to be an empty nester and eventually spoil grandkids) but in the perspective of eternity this life was actually very brief, and her expectation was that God would eventually make everything okay.  This thought took hold of me and gave me the perspective/courage I needed to leave my family and move to Africa.

I also know a family here in the D.C. area with 4 kids.  The eldest has Down’s and is a complete riot.  I only met her once, but I still hear stories about her that make me laugh.  When she was born people understandably struggled to find the right thing to say.  Some of the comments were a little too pitying to be encouraging, though, making her father glad that he was/is her dad, not anyone else.  Thankfully,  the Lord knows where to put kids like us.

193. Tanpo’s Greatest Hits

Yesterday was Father’s Day.  2 years ago I got a “Community Pass” from RIO (3rd Hospital) and my nurse M helped me get ready so my parents could take me to church.  It was the last time I went to W and I wasn’t aware enough to understand what was happening.  I was just kind of like, okay, whatever.  Although I thought that you couldn’t really make ALL those people conspire to act like I got sick at the same time, so maybe this did really happen.  I haven’t been back yet, but I really want to try and go soon – it’s just that i have to go on summer vacay at Boo Boo’s first, and then schedule my vocal cord procedure.  In that order.

I was just dozing with my iPod on and a Paul Baloche song came on and I woke up with a jolt because it made me think of going back to church in Oregon (I learned that song there), and I think I have a teensy bit of anxiety attached to going back.  Because 2 years ago I wasn’t very aware of my situation, but now I’m acutely aware, and if I’m not making a concerted effort to not be sad it can take me by surprise.

Here’s a quote from 102.  The Power of Choice

In general, once I had a better understanding about my situation, I have tried not to be too sad in front of Tanpo because he’s sad enough for me as it is. I’ve also given him a bit of a tough time – before I got sick, I was like, “Dad, I want to go to Africa.” Then I had this big brain thing, woke up after a month+, and the first time we were alone I informed him, “Dad, I still want to go to Africa.” It was Father’s Day.

Heh, heh.  That was after we went to church that Sunday, and I still had some time before I had to check back into the hospital so we lunched at the cafeteria downstairs.  Mommy was in line and Tanpo was sitting with me so I took the opportunity to make my intentions clear.  This is only one of the many funny things that have happened since I got sick and came home to stir the pot.  Well, they might be funnier for me than for Dad.  But still.  I heard my Mother’s Day post was a bit of a tear-jerker, so I’d like to give you something a little more light-hearted.  There are several more instances of me and Tanpo giving each other a hard time that I could have posted, but I limited my selections to the two below.  Happy Father’s Day!

********************************************

7.  An Infinite Do Loop

Walking the loop

Tanpo and I went walking on Friday and walked the “loop” in our neighborhood for the second time in my post-AVM life.  This has actually been a goal of mine since I woke up in the 2nd Hospital and was chattering away, making lists of things I wanted to do when we got home.  I told Mom where we needed to go shopping, and restaurants we needed to eat at, and I said I wanted to go walking with Dad but needed him to promise to hold my hand since after his triple bypass in ’09 I used to march him around the neighborhood but he refused to hold hands with me since he thought it was safer to meet oncoming traffic if we walked single-file.  Dad said he’d hold my hand now, but my hands are occupied.  I usually push Charles my Rice Baby (a stroller weighed down with 20 lbs. of basmati) when we go outside, but since E&R borrowed him to go on a Smithsonian field trip I pushed Jack, my blue transport chair.  The loop is only 1.8 miles long, and it used to take a leisurely 20 minutes, but this time it took an hour and I needed to rest periodically in some random driveways.  If Mommy had been home she would have come to collect me in the car around the 40-minute mark, but Mom was at the grocery store,  and Dad’s evaluation of my physical condition indicated that a little rest in the shade would give me the boost I needed to walk several yards, so we eventually made it back home with me pushing the chair, not riding in it.

It felt like I was on the never-ending walk, and in a lot of ways, this entire experience is like an infinite do-loop.  I’m not a coder by any means, but I took an intro to VBA course in B-school where we scoured our VBA for Dummies textbooks and emailed each other our models when they got stuck doing the same thing over and over and we were hoping a fresh set of eyes would uncover the infinite do-loop that was messing us up.  I definitely feel like a hamster on a wheel as I struggle to regain the ground I lost this past summer as my left leg began to act up.  I learned early on in Physical Therapy, however, that “the goal is for you to tell me before you pass out,” and then I met hardcore PT6 and his equally hardcore intern, PT7, so I’m used to people who mean business.  I shouldn’t be surprised that Tanpo is one of them – my prior experience points to this tendency in him, I was just hoping to play on his paternal sympathies.  Oh well.  I think that he thinks the best thing he can do for me is push me to do more.  So he does.

But its not just regaining lost ground that makes me feel like a hamster on a wheel – it’s every day living.  At the same time that I love to celebrate life’s events with my friends, every time I learn of a new home, a baby born, or a promotion won my happiness is tinged with longing.  It’s a longing for the kind of life that isn’t mine right now.  I suppose, though, that lots of people feel the same way, meaning that they are in an infinite do-loop.  Maybe it goes like this:  Get up, go to work, fight traffic, put a square meal on the table, help with homework, supervise bath time, enforce bedtime, go to bed yourself, get up and do it again.  I used to do that, minus the kid-related things, of course, and I was happy about it, because my life, although quiet, was purposeful.

A friend shared a B. Moore quote with me recently that said something like how we can live with pain a whole lot better than we can live with purposelessness.  So when I think about my life today, yes, there’s pain, but it’s still purposeful – I’m just in “waiting mode” to see what the purpose is.  In general, though, pain happens, but purposelessness doesn’t have to.

18.  Dad, tell me that thing again…

The “Spine Place” at Planet Rehab – note the fun spine artwork

I went for a nice walk with PT37 in the Therapeutic Garden at Planet Rehab on Thursday.  Leo the Cane stayed behind in the gym since one of my goals is to walk sans assistive device, so we’re practicing.  Now I know I said it was a goal but I kind of assumed we were going to work up to it.  Mommy, however, has allied herself with PT37 and now just hands her Leo when we meet in the waiting room before Therapy.  Anyway, the weather was so beautiful and there were nice long pathways that were also wide – perfect for fitting a wheelchair or two people (one with an abnormally wide stance, like me).  After a long downward slope we came to an outdoor staircase.  It was actually more like 4 mini-flights and PT37 just said three words:  “Up the middle.”  I tried to hide my horror, but I think she sensed it since she assured me that she was right beside me, and I could feel her holding the gait belt firmly in back of me, so there really was nothing for me to do except follow instructions.

If I ever hesitated at The Place I’d hear PT6 start talking and I’d look at him out of the corner of my eye since turning my head entirely is risky in that if I’m not looking where I’m going the likelihood of falling increases exponentially.  “I’m still with you,” he’d say, or some variation thereof, but the rough translation was always, “Get a move on because I won’t let you fall.”  I could usually sense the couple of fingers PT6 kept on the back of my gait belt, but if I couldn’t I’d peer into any reflective surface we passed to verify his location.

I once heard OT6 coaxing a patient out of his wheelchair.  His session was after mine and I could see what was going on from my vantage point on the recumbent bike.  He was sitting back in his chair, refusing to budge, and OT6 told him with great conviction, “I promise:  I willnot let you fall.”  I think twenty years of experience lent her voice credibility and pretty soon that man was out of his chair, pushing that giant shopping cart across the gym like I used to do.

So the promise of fall-prevention, or just the mere knowledge that a licensed professional is standing next to me has been enough to get me to do all sorts of things in Therapy I’d never do otherwise.  This pattern became more prevalent when I became an outpatient.  As an inpatient I think fall-prevention was more implied than spoken, plus I didn’t really care at that point – I just did as I was told.   We were busy doing things like sitting, standing, and steering a walker while keeping it on the floor, so the risk factor was lower in general.  When I returned to Therapy at The New Place in August one of the evaluation tasks was a “Dynamic Gait Test.”  This included walking and then turning my head left/right/up/down when PT30 said so.  When she explained the instructions to me my face must have been like, Ummm…I think you’re insane – because PT29 immediately put her clipboard down and told me she’d hold my belt while I did this.  That was all I needed to hear, and I immediately focused on walking down the hall without any further ado.

I haven’t felt fear like what I felt about learning how to walk, or how to climb stairs without holding on to anything, since I woke up in the 2^nd Hospital.  I wasn’t lucid at that point and I had no recollection of Mommy telling me what happened for the past month+ so when I woke up I was really confused.  I was so scared I’d say anything to delay my parents’ departure for the night.  Once I said, “Dad, tell me that thing again about ‘Immanuel, God with us.’”  I knew Dad had been enjoying a meditation on this subject and had shared it with me the day before in an attempt to show me how I didn’t need to be afraid.  Tanpo drew a chair up to my bedside and settled in and I triumphantly rested in the fact that I had gained an extra 10-15 minutes. (Side note:  Mom says she had no idea how naughty I was until I got sick.  I’ve always known my capacity for naughtiness.  I think it took some skill to hide it from my own mother for 30 years!)

Now that I’ve moved beyond that early stage of fear and disorientation I’ve realized that aloneness is still an anxiety-trigger for me, but knowing someone’s got your back is a powerful antidote.  If I ever lift the curtain (even just a little) on how painful it is for me to watch life pass me by while I clutch my stuffed horse (no offense, Ed), even the people nearest to my heart don’t know what to say.  I don’t blame them at all – I certainly wouldn’t know what to say, and I’m not sure if there’s anything really to be said in a situation like this.  I’m just grateful for their presence and their willingness to play my game of, “Let’s pretend nothing happened!”  So yes, this situation has been incredibly isolating, but I just have to remind myself that I’m not alone.

Matthew 28.20 “…and lo, I am with you always, even to the end of the age.”

 

This one ALWAYS makes me laugh:

12B. Codebreaker

52 x2. Will You Take Care of Me?

We celebrated Moms yesterday.  Since I don’t post on Sundays, I’m taking the opportunity today to re-post my favorite Parent post because I love Mom and Dad and I recognize that they do some serious heavy lifting to take care of me daily.  xoxo

In other news, I went to Whole Foods with Ernie and Kpop/Ez on Saturday and the one we went to has a parking garage underneath, and then you have to make your way to the upper level to access the store.  I rode the escalator for the first time!  I have considered it before, but have chickened out or it was vetoed by Mommy.  But this time I climbed on (that was the hardest part) and Ernie rode up before me and prepared to meet me at the other end.  But I had so much time to look at the top of the stairs and gauge the speed at which the escalator was moving that I was able to step off smoothly.  My brother characterized it as “anticlimactic.”

This is how Mommy takes care of me – comfort food!

I had a few minutes after VT yesterday so I sat down and read a book.  Childrens’ books generally have large print so they are easier for me to read.  Plus they are heavy on the pictures, which I also like.  Much of the clientele is pediatric, so the waiting room has a bunch of books and puzzles for kids.  I picked up a hardback picture book called Will You Take Care of Me? (Bridges & Sweet, Harper Collins 1998).  The premise is that a mommy kangaroo and her baby are on their way home. On the way, the baby kangaroo asks a series of questions, e.g. “If I turned into an XYZ would you take care of me?”  The baby imagines turning into many things, including an apple tree, a bicycle and a bar of soap, and each time the mommy responds with some appropriately witty answer that indicates she’ll always take care of the baby no matter what.

At the end of the book the little kangaroo asks, “What if I became a baby again?” – would his mom redo the hard work of caring for an infant?  Of course the mommy answers with a resounding “Yes” and I was ready to bawl at that point.  Thankfully my own Mommy came in the door at that moment so I distracted myself with putting on my coat and getting into the chair lift.

The reason why that book made me sad was because that’s what happened to me.  I was 30 years old, able to support myself and live independently, and then all of a sudden I became a baby again and my parents had to move to OR and do everything for me.  I’ve asked Mommy about it, and she kind of shrugged and told me, You’re our child.  Where else would we be?

Many people might agree and think that what my parents did was an ordinary and expectable response.  Based on what I’ve heard about parenthood, perhaps others would have done the same thing.  I’m just pointing out that my parents rearranged their lives to move to OR for a few months, then kept on rearranging them so I could move back in with them.  Naturally, it’s hard for me sometimes since I’m an adult and was used to living in absolute independence, but I gratefully acknowledge the backbreaking work my parents have put in to take care of me, a very large “infant,” since I’m physically unable to care for myself.

Since it was unknown when I’d wake up, Mom and Dad just waited by my bedside for over a month.  “Wasn’t that boring?” I asked one day.  Mommy didn’t even dignify my question with a response.  She just made a sound like, Pshaw.  The sameness was made bearable by the expectation that one day I would wake up, so they waited patiently.  Spoiler Alert:  I woke up and gave lots of people a (mildly) hard time. 

What happened to me was sudden, meaning there was a point in time that marked my transformation from independent to disabled person.  But there are many folks who face a life of caring for a child with special needs from the point of birth.  The road can seem awfully long and I applaud those parents who care for kids like this on a daily basis.  I also take my hat off to the grandparents who spend their golden years raising their grandchildren for whatever reason, but I digress.

When I was in OR I got to know a family with 2 daughters.  Our care group met at their house and the dad was the ringleader.  He also happened to work in the group I interned for in 2008.  The eldest (K) has special needs and will likely require care for the rest of her life, and the youngest (B) is currently away at college.  I got to know them both, and got along with K since I thought we were very alike (more so now that my filter is compromised), and I was also like B in that we both tend to work/study a lot.  Maybe a bit too much.  Their mom told me once that sometimes it might be hard to face a lifetime of care (when the normal way of things is to be an empty nester and eventually spoil grandkids) but in the perspective of eternity this life was actually very brief, and her expectation was that God would eventually make everything okay.  This thought took hold of me and gave me the perspective/courage I needed to leave my family and move to Africa.

I also know a family here in the D.C. area with 4 kids.  The eldest has Down’s and is a complete riot.  I only met her once, but I still hear stories about her that make me laugh.  When she was born people understandably struggled to find the right thing to say.  Some of the comments were a little too pitying to be encouraging, though, making her father glad that he was/is her dad, not anyone else.  Thankfully,  the Lord knows where to put kids like us.

Picture of the Day:  

Doing what we do best.

157. Katie’s Red Velvet Brownies

I love being an Aunt.  And I am so pleased to be able to do things for MY children again – I used an immersion blender to make pink milk (strawberry milk, as in Charlie and Lola) for Hannah and Josh and I more recently used the Vitamix to make some healthier ice cream for Karine and (Dairy Free) for Ezra.  Peter’s too little to eat ice cream yet, but his time will come.  Ohhh yes, his time will definitely come, especially since I’m back in action.

The Aunt of a dear little girl who had an AVM rupture in the same location as mine recently found me via my site/blog.  That’s one of the primary reasons I write, BTW, so people who hurt can find me.  I think Katie recently turned 8 and was recently admitted to the Rehabilitation Institute of Chicago.  Love for Katie is her FB page.

She is currently working on simple goals, e.g. head control.  When I first showed up at RIO (3rd Hospital) I had never been out of bed for more than an hour, and I was horrified to learn that a wheelchair with a headrest was unavailable my first day.  A (2) built one out for me as soon as he could.  Consequently, I spent the day in the wheelchair (and clothing that was not a hospital gown) for the first time, but Mom had to hold my head up for me.  See?

By the time I left to fly to MD a month later, A told me during one of my last PT sessions to set up my chair perfectly for transfer (to a mat), which I did – I pointed my toes away from where I was going and landed on the mat, proving that I had indeed been listening even though I looked pretty spacey all the time.  “It’s like working with a different person,” he told me.  And I was – I was beginning to suspect that this situation was real after all, so maybe I should try and learn something from these people while I had the chance.

Fast forward 22 months, and my recovery’s pace (and trajectory) have slowed dramatically. It didn’t have to be as good as it was/is.  I am thinking more and more about the part I wrote in “Caring for a SNC” where I was like, even if I didn’t improve one bit I know my family would love me for who I am today.  Don’t get me wrong – I want improvement above anything else – I just take comfort in the fact that my family’s love and support is independent of my physical progress.

Apparently a lot of people love and support Katie and her family as they walk through this.  They had a benefit dinner in her honor this past weekend.  It’ was out of of state, plus my stamina wanes as the day marches on, so I couldn’t go.  I did, however, make some Red Velvet Brownies for Katie.  These are my favorite out of the things I’ve baked so far.  These are grain free and have no added sugar/honey/stevia – nothing.  I am not allergic or diabetic – for more info on why I eat like this, read this.

These might suit you if you need GF foods, but nuts are the base, so if you’re allergic to nuts, stay away.  Otherwise, enjoy – they are nice and chocolatey, and I liked these both warm and straight from the fridge.  Also, I am trying a lot of nut-based experiments since I’m not into flour lately (although I tolerate gluten with no problem), but I don’t feel like buying a supply of almond flour or a GF blend, etc.  I don’t even want to go buy some almond butter (my friend R recommended this to me, and it is indeed, delicious) since I am the only one in our house who would eat it, and it would likely sit in our pantry until 2020.  We do, however, have bags or whole nuts in the freezer.  I’m using cashews here since they are mild in flavor – Mom keeps these around so she can toast ’em up and add them into some of her dishes.  I can use whole nuts relatively easily since I have a Vitamix – I just dump the  (thawed) nuts in first and then grind them before adding the other ingredients.  The nuts get mealy but I’m too impatient to wait for them to turn into butter.  If, however, you are not enthused over using whole nuts, I would not hesitate to use the nut butter of your choice.  Also, you could puree the beet before hand if you don’t want to make this in the blender.

One final note – although these are grain free and contain no added sugar, I still consider these a treat.  The cashews I used contained 13g of fat per 1/4 cup.  You do the math.  I think there’s talk of good fat etc. but I’d recommend playing it safe and regulating your intake.

Katie’s Red Velvet Brownies

Inspired by the Detoxinista’s cookies

Preheat oven to 350, Grease small pan – sorry, I forgot to measure again.  I used a small pan that would fit in the toaster oven – probably somewhere in the range of 6×10…some of my brownies were really thin and I would have used a 6×6 square if I had one on hand.  

Ingredients:

• 1.5 c cashews
• 1/4 c cocoa powder
• 1 egg
• pinch of salt
• 2 splashes of vanilla
• 1/2 tsp baking soda
• 1/2 beet (raw, peeled and cut up into smaller chunks)
• 1/3 c Greek yogurt (try soy yogurt if you want dairy-free brownies)
• 1/2 c white chocolate chips (optional – I want to try a version without chocolate chips.  I’m going to cut the pan of brownies in half, slather my Greek yogurt-cream cheese “frosting” in between to make a sandwich, but if you want to eat these straight up, go for the wcc’s.  I also enjoyed the sprinkles on top because they were pretty.)

Instructions:  Grind the cashews first (I used a Vitamix).  Add everything else to the blender except the white chocolate chips.  Puree.  Fold in the chips at the end.  Pour into your greased pan, bake for 10-12 minutes.  (I baked mine for 10, but Mommy opined that they could’ve used a couple more minutes.  I think that would have been fine, but I do have to say that I really like that dense, moist, almost fudge-y texture when it comes to brownies.)

P.S. Happy ANZAC Day!

My other Grain Free Favorite:

130.  Flourless Peanut Butter Muffins

139. How to Care for a Special Needs Child

This is by no means an exhaustive list of ways to care for a special needs child, but it’s just a few thoughts that have grown out of my experience as a SNC (technically I’m an adult, but have become a child again in many ways) as well as my interactions with the special needs children in my life. Obviously I am not the parent of a SNC but Mommy and I have discussed this at length. Anyway, think of these things as a starting point.

1) Care for yourself.
If you’re a caretaker, remember the safety speech flight attendants give before take-off: You’re supposed to fix your own oxygen mask first before helping your child with his/hers. This applies to caring for children with special needs – you’ll be no good to anyone if you’re so harried you’re making yourself ill. Taking care of yourself might require you to accept help from others, e.g. people might volunteer to do things like come and fold your laundry, cook you a meal; or perhaps you might decide the best course of action would be to hire a housecleaning service; maybe you need a mental break and you want to go to the spa or play golf. It doesn’t make you a bad person, or an inferior caretaker for seeking/accepting help or relaxation. It allows you to save more energy/recharge for your primary job function.

Also, if you’re an interested onlooker, be a huge cheerleader for the caretakers you know. A long time ago I read the bio of Nick Vujicic (the young man born without arms or legs, he travels the world speaking and despite his lack of limbs he has impressive mobility skills. He also apparently has excellent balance – I think the cover of one of his recent books shows him surfing. Surfing.). He said that when he was born (I think he was the firstborn, and there had been no indication that the infant would have any issues) no one sent his mom flowers. Now I’m not going to blame any friends of the family for not sending flowers since it’s so hard to know what to do/say in a situation like that – perhaps they thought flowers would have been more upsetting? But I’ve thought about that story for a long time. So I’m re-gifting this beautiful bouquet that I received in the ICU – they’re a little late, but they are in celebration of the new grandson that just joined the family.

2) Remember the siblings.
The family that includes a SNC might often find itself dominated by the immediate and admittedly urgent needs of that child. If there are siblings in the mix we don’t want them to get lost in the fray. The siblings are the SNC’s greatest chance for normalcy in that they will need to learn how to “push and shove” as they grow up, like normal siblings do. Also, the siblings can be the SNC’s greatest advocates when the parents aren’t around to shield from playground meanies etc. So whether or not you’re a member of the family, or just a concerned onlooker, remember the siblings and make them feel special, too.

Side note: In case my siblings haven’t figured this out yet, they all fall into the category of people I can never do enough for. I can’t even begin to list the things they’ve taken care of for me that allowed me to move back to our parents’ house and live my outpatient life. Also, I’m thinking of one particular story in which someone showed special kindness to my sister simply because she’s my sister. That one act won my loyalty for life and opened the door for our kind friend to get to know what a funny and lovely person Ai Ai is as an individual.

3) Celebrate the small stuff.
When I first learned to sit up my parents would sometimes Skype with Ernie & Co. while I was sitting in my Physical Therapy chair. One day, Ernie, Karine and Ezra were on the screen and I remember Karine looking at me through the computer’s camera and saying encouragingly, “That’s good sitting, Aunty Ning Ning!”

When I was officially let go from my job I celebrated by hosting a frozen yogurt party for Hannah and Josh since I was staying with them at the time. Celebrating turned a sad occasion into a happy memory.

Being a party waiting to happen (and I don’t even like parties) helps break up the monotony of recovery. And if you think about it, there’s a lot to celebrate. Just be enthusiastic so the SNC can get on board with things as simple as sitting in a chair. An accomplishment is an accomplishment. Let’s call a spade a spade.

4) Make adjustments so that SNCs can help.
This weekend Ruthie asked me to snap the ends off of the asparagus for dinner. I was only too pleased to be able to do this simple but therapeutic task (I focused on my weaker hand’s movement).

I used to be able to reach the washer and dryer from my wheelchair, but since I started walking it has gotten harder since you have to stoop a lot to get things in/out. So Tanpo suggested I wheel Jack, my transport chair, over to the laundry room if I really was bent on doing the wash. Yes, I’m bent on doing the wash because being able to do things around the house is a HUGE notch on my belt as a SNC. Mommy has to get the things out of the back of the dryer for me, but the little helps I receive contribute to me being able to help in my own way.

5) Communicate love and acceptance based on the SNC’s current state.
There is a lot of hope in the way I live since we’re waiting and seeing what the extent of my recovery will be. But I know that if I could only lie in bed (like the early days), unable to even communicate by blinking, my family would love me anyway. It might be the case that a SNC is incapable of “helping” around the house in any way as detailed in #4. In the event that an SNC can’t even squeeze your finger back as you sit by his/her hospital bed, hold his/her hand anyway and continue to talk to them. Even if I don’t get one iota better than I am today, I know that my family loves me because of who I am at present.

6) Cultivate a spirit of thankfulness.
I read the story of a child in another country whose mother carried him to school for 2 or 3 years since he did not have a wheelchair. The problem was that the teachers were beginning to tell this mom that the child was getting too old and too heavy for them to lift around the classroom. That’s when Joni ET’s organization, Wheels for the World, stepped in and provided a child-sized chair for this young scholar.

Seeking medical treatment might be taxing on a family’s resources, but the fact that intervention is even an option, and that there are options to choose from, are wonderful privileges of living in a part of the world where such services are available. I’m not saying you need to immerse yourself in a world of depressing “could be worse” scenarios to cheer yourself up, I’m just saying that concentrating on the “Haves” instead of the “Have Nots” of your life is good practice for everyone.

This is the story behind the flowers pictured above. Also, these lilies are for the lovely Mrs. V, who recently delivered their first child – a beautiful baby boy.

98. FOMO

137. Relocation

I recently met the mom of a kid with an AVM – it has been diagnosed but it hasn’t ruptured. Still, the parents have done their homework, identified a good doctor, inquired about health insurance logistics, sought job transfers and are planning to relocate to another state in order to be near the medical help they have identified should the need arise. Note that all of this preparation has been taken without any rupture – these parents are rearranging their family’s life just in case.

You might think that moving to another state is a little much, but I figure that as parents, the threat of a bleed happening in their child’s brain is enough to merit extreme action. (Maybe I’m biased, but I applaud this family’s proactive plan.) Sometimes you gotta do what you gotta do, and although they are moving in order to have ready access to medical intervention, I hope they never have to use it.

They are living with a big “what if,” but my family dealt with the fact that major surgery would be required. I’m not even talking about me – my big brother was the one diagnosed with heart issues when he was born, and it was clear that he could not live without surgery. So Tanpo wrote letters (not kidding – snail mail letters, like with a stamp) to potential heart surgeons and finally settled on one in Alabama. (Side note: I have to ask Dad how he managed to identify candidates. I honestly don’t know how one would have approached such an issue before the Internet.)

So my family (Dad, Mom, and my brother and sister – I wasn’t born yet) moved from Singapore to the United States. (Australia was a candidate – Hi, Australia! – but they ultimately decided on the US.) They didn’t move to AL – they moved to the Washington, D.C. area since Dad was working for the World Bank at the time (I think). Transitioning into the private practice of law was another reason to move to America, but I think Ernie’s need for surgery was the real catalyst.

These days you would have no idea my brother ended up having two heart surgeries. He’s too busy running around after the “wild ones” + Peter. My brain issue has dominated the landscape of our family health history lately, so a lot of times I forget that my brother was an ill baby because he’s so able-bodied now. Side note: the reason I started putting kale and spinach in my juice is because I learned it from Ernie – he makes this wonderful kale and carrot juice (yum!).

So my family made a major change in order to secure the services necessary for my brother to live. When I put it that way (it’s necessary for the child to live), it suddenly doesn’t sound like so much heavy lifting. But things like relocation are heavy lifting, especially if you have other children in the equation. But when I see my brother, with Ruthie and 3 kids xxoo, I dare anyone to question whether it was worth it.

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52. Will you take Care of ME?

 

52. Will You Take Care of Me?

 

This is how Mommy takes care of me – comfort food!

I had a few minutes after VT yesterday so I sat down and read a book.  Childrens’ books generally have large print so they are easier for me to read.  Plus they are heavy on the pictures, which I also like.  Much of the clientele is pediatric, so the waiting room has a bunch of books and puzzles for kids.  I picked up a hardback picture book called Will You Take Care of Me? (Bridges & Sweet, Harper Collins 1998).  The premise is that a mommy kangaroo and her baby are on their way home. On the way, the baby kangaroo asks a series of questions, e.g. “If I turned into an XYZ would you take care of me?”  The baby imagines turning into many things, including an apple tree, a bicycle and a bar of soap, and each time the mommy responds with some appropriately witty answer that indicates she’ll always take care of the baby no matter what.

At the end of the book the little kangaroo asks, “What if I became a baby again?” – would his mom redo the hard work of caring for an infant?  Of course the mommy answers with a resounding “Yes” and I was ready to bawl at that point.  Thankfully my own Mommy came in the door at that moment so I distracted myself with putting on my coat and getting into the chair lift.

The reason why that book made me sad was because that’s what happened to me.  I was 30 years old, able to support myself and live independently, and then all of a sudden I became a baby again and my parents had to move to OR and do everything for me.  I’ve asked Mommy about it, and she kind of shrugged and told me, You’re our child.  Where else would we be?

Many people might agree and think that what my parents did was an ordinary and expectable response.  Based on what I’ve heard about parenthood, perhaps others would have done the same thing.  I’m just pointing out that my parents rearranged their lives to move to OR for a few months, then kept on rearranging them so I could move back in with them.  Naturally, it’s hard for me sometimes since I’m an adult and was used to living in absolute independence, but I gratefully acknowledge the backbreaking work my parents have put in to take care of me, a very large “infant,” since I’m physically unable to care for myself.

Since it was unknown when I’d wake up, Mom and Dad just waited by my bedside for over a month.  “Wasn’t that boring?” I asked one day.  Mommy didn’t even dignify my question with a response.  She just made a sound like, Pshaw.  The sameness was made bearable by the expectation that one day I would wake up, so they waited patiently.  Spoiler Alert:  I woke up and gave lots of people a (mildly) hard time. 

What happened to me was sudden, meaning there was a point in time that marked my transformation from independent to disabled person.  But there are many folks who face a life of caring for a child with special needs from the point of birth.  The road can seem awfully long and I applaud those parents who care for kids like this on a daily basis.  I also take my hat off to the grandparents who spend their golden years raising their grandchildren for whatever reason, but I digress.

When I was in OR I got to know a family with 2 daughters.  Our care group met at their house and the dad was the ringleader.  He also happened to work in the group I interned for in 2008.  The eldest (K) has special needs and will likely require care for the rest of her life, and the youngest (B) is currently away at college.  I got to know them both, and got along with K since I thought we were very alike (more so now that my filter is compromised), and I was also like B in that we both tend to work/study a lot.  Maybe a bit too much.  Their mom told me once that sometimes it might be hard to face a lifetime of care (when the normal way of things is to be an empty nester and eventually spoil grandkids) but in the perspective of eternity this life was actually very brief, and her expectation was that God would eventually make everything okay.  This thought took hold of me and gave me the perspective/courage I needed to leave my family and move to Africa.

I also know a family here in the D.C. area with 4 kids.  The eldest has Down’s and is a complete riot.  I only met her once, but I still hear stories about her that make me laugh.  When she was born people understandably struggled to find the right thing to say.  Some of the comments were a little too pitying to be encouraging, though, making her father glad that he was/is her dad, not anyone else.  Thankfully,  the Lord knows where to put kids like us.