Helping ALS Patients and Families

In the last couple of weeks, as the ALS Ice Bucket Challenge has continued to spread, some questions have arisen about the ALS Association.  A lot of people have stated, on social media and elsewhere, that they feel ethically or morally unable to contribute to the ALS Association because of a study funded by the ALSA that includes research into embryonic stem cell research.  This concern has gone more or less viral in certain communities, some of which I happen to affiliate myself with.  In some cases, people have outright dismissed the challenge and the idea of participating altogether.  I've responded as best I can via Facebook to individuals, but this has spread so far now that I felt compelled to write up my thoughts here to share with you.

If you are reading this, you probably know that both my grandmother Jean and my mom Lillian died from ALS, in 1979 and 2011 respectively.  The Ice Bucket Challenge timing really affected me, because Mom died three years ago this week.  With that in mind, it's hard not to take the cynical, the dismissive, even the well-meaning critics of the ALS Association and the challenge poorly.  Put bluntly, a lot of the comments have hurt.  A lot.

Before I go further, let me state that I am pro-life.  My mother was a very active pro-life advocate; she counseled young women when she was in the Navy, and she remained active in the Catholic Church, the Ladies' Auxiliary of the Knights of Columbus and other groups in promoting the pro-life message.  And she was very motivated to actually help those in need as opposed to simply talking about it.  That's the environment I grew up in.

I am not affiliated with The ALS Association, and I don't speak for them.  My family did receive help from our local chapter when Mom was sick.  I will say that I think that the ALSA takes a very broad-based approach to ALS research, and I don't fault them for that at all, even if I have ethical concerns about embryonic stem cell research.  We're talking about a disease that medical science has almost no answers for.  They don't know precisely what causes it (if it's all genetic, which environmental factors may contribute), how to prevent it, how to slow it down, how to cure it.  It strikes seemingly at random, but then it occasionally runs in families, it strikes veterans at a high rate (especially Vietnam and Gulf War vets).  People have been diagnosed as young as 21 (Stephen Hawking) and as old as 70.  The scientists studying ALS have to look everywhere.  I can't - I will not - blame them for choosing to look everywhere.

But.

I understand, very well, the arguments against embryonic stem cell research, which I will not rehash here.  And with that in mind, I understand as well that there are people who want to help but who cannot in good conscience give to the ALSA because of those arguments.

So where do we go from there?

A few general thoughts.

1 - Find another organization to give money to.  The John Paul II Medical Research Institute is a good start.  If you would rather a non-denominational or non-religious organization, I recommend my mother's favorite charitable cause, the Paralyzed Veterans of America.  The PVA was extremely helpful to my family during my mother's illness, and because ALS is a paralyzing disease, veterans with ALS may find help there.  Finally, the ALS Foundation for Life is focused more on helping patients and less on research (an ALS patient may spend more than $100,000 on assistive equipment and medical supplies during illness).

2 - Be mindful of what you say, and how you say it, on social media.  Remember that you don't know who in your circles may be suffering (I have discovered that three friends have family members awaiting diagnosis of ALS, and I've lost count of how many people I know personally had someone in their lives die from ALS).  The Ice Bucket Challenge is goofy in nature, but it had a very serious beginning and it has a very serious purpose.  Be mindful of what you say.

3 - ALS may not be the cause you should take up.  We all have someone and something we care about, and it is truly impossible to help everyone everywhere with everything.  I have a cousin whose passion is organ donation, because her husband suffered from a lung disease for which the only cure was a double-lung transplant.  My mother-in-law is a breast cancer survivor.  My brother has spina bifida.  And so on.  We have to pick and choose which causes to support - this is the nature of our reality.  So maybe you should help with Alzheimer's research and care, or cancer, or MS, or cerebral palsy, or autism, or any number of other causes.  I think the real challenge is to stop and help whenever and however you can.

I will leave you with this.  My mother was diagnosed not because there is a test for ALS, but through a process of elimination.  When she showed up at her doctor's office with slurred speech, having trouble swallowing, the first tests were for thyroid and brain cancer.  It took weeks to get a real answer and again, there was no test for it.  It was just that everything else was eliminated.  She had a speech machine not unlike this one.  When she lost the use of her leg muscles, she was wheelchair-bound, in a motorized chair.  The house had to be retrofitted to accommodate the chair and her new special needs.  She needed a feeding tube, and special nutritional drinks that could be fed to her through the tube.  Eventually she needed a hospital bed.  A home health nurse.  Special dental work to protect her mouth once she could no longer close it.  She was prone to bed sores and pneumonia because of her immobility, and so needed treatment for that.  I will spare you a full accounting of what kind of care she needed daily, but I am sure you can imagine.

What we need, even as desperately as we need research and development, is practical help for patients and caregivers.  Find a way to help.  Don't dismiss the cause because of one issue with one organization.

Remember my mother.

The ALS Ice Bucket Challenge

My #IceBucketChallenge Response: http://youtu.be/axJDigsWNPE

On this, the third anniversary of Mom's passing, I want to share my thoughts on the Ice Bucket Challenge.  

doing something here and now

Have you heard about the 270 girls in Nigeria, kidnapped while at school by a terrorist group determined to sell them into slavery?

Here are the names of 177 of those girls.  The entire story is devastating, and then seeing their names like that....it breaks you.  

The terrorist group, Boko Haram, has been on the radar of intelligence agencies in the States, but the U.S. State Department declined to add them to an official list of foreign terrorist groups back in 2011. It isn't clear what the U.N. can do here, though it has condemned the act.  Nigeria's president is determined to act.  

We have a sense of what "boko haram" means.  Some are claiming it means "Western education is a sin," others say that is a simplification.  I think it doesn't matter, because the men using it to describe themselves have determined that they will prove their resolve by punishing girls.  They ripped those girls, those daughters, from a school, while they were learning.  We are foolish if we miss the significance of that.  Whether "boko haram" refers to a resistance to "western" education or indoctrination or if it is slang for toilets flushing doesn't matter.  Their actions speak very loudly.

What can we do, the world wants to know.  

I don't know the answer to that.  I am not sure who does.  

But.

Right here, in our own backyard, there are girls who have been sold into slavery.  Human trafficking is a huge problem right here, even in Texas.  

If we are sickened and shocked by what is happening in Nigeria, we should be devastated, crushed over what is happening much closer to home.

What can we do.  We can help whomever it is within our power to help.

Free the captives.  Free the Captives, a 501(c)3 in Houston, is reaching out to help victims of sexual slavery in that community.  They are doing incredible work.  I had the opportunity to talk to Free the Captives' founder several months ago, and I was awed by what they are accomplishing, saddened to learn what they are up against.  

It isn't much.  But I think if we help even one girl, we are making a difference.

Doing something, when it seems we can do nothing.

hindsight

I haven't posted in quite some time.  This post isn't me coming back, not really.  It is just about passing on information.

This blog started because of a day in 2008, when I realized the process of losing my mother had begun, was already quite progressed, before any of us had a chance to realize what was happening.

It isn't hypochondria to have odd symptoms and go to a doctor with questions.  It's responsible.  My mother was likely sick for a long time; symptoms we didn't press her to have looked at now, in hindsight, feel like red flags.

ALS mimics other diseases.  Some of its symptoms may also signal MS, thyroid issues, or in the case of someone the doctor in the link below knows, a slipped disk.  The point is - know your body, know what is normal and what isn't, and go to the doctor.

ALSA March 2014 - Ask the Doc - Do I have ALS?

thwarted

I did, more or less, start using my cookbooks more often.  I went through stacks of cooking magazines, too, and cut out the intriguing recipes that led me to buy them.  I stuffed those in my own cookbook and made some interesting dinners and things.

But I utterly failed to blog about any of that.

I would like to be a better blogger, a more consistent writer, and most of all, I would like to find a way to channel all of the things that interest me into those hobbies.  At least some of the things.

It is Christmas Eve, and we stare down the new year with hope and trepidation and resignation all sort of wrapped up together.  I would like to write.  Will I have the stamina to stick to my plans and reach my goal?

Do I have one?

One thing at a time.

Cookbook collector

Fall cleaning has been underway for a few weeks at our house, as we tackle things like outgrown toddler clothes and the never-read stacks of books on our shelves.  One chore I tackled was shaking out my cookbook collection, which isn't actually very big but which does tend to collect dust more than provide inspiration at dinnertime.

I want to put those cookbooks I am keeping to better use, and what better way than to cook and blog about it?

Starting next Sunday and continuing on Sundays until I tire of this or lose the habit , I am going to pick a meal we have not tried from one of my cookbooks, and post about it here.  I will take pictures when possible and share a link to the cookbook in question when available.

As I said, my collection is small, but it is fairly diverse.  I have some inherited church cookbooks dating to the 1970s, some purchased ones with recipes going back 100 years, a Julia Child kitchen basics book, Paula Deen, Ree Drummond, Rachael Ray.  I have a handful of ethnic cookbooks and some other things.

My goals here are to try new things, shake the dust off my collection, and bring something to this blog I have not known what to do with.  This won't be strictly a cooking blog, of course, but at least there will be regular content!

I have started going through recipes and hope to decide for sure what I will start with this week. 

Yay for new projects!

airplanes

The first thing I noticed after that day was the silence. No planes in the sky.

My daughter's favorite word these days is "airplane." She hasn't ever seen a real airplane, not up close, just had them pointed out to her from our grounded vantage point. She's not yet known a day when there are no planes in the sky. They are a part of life, for her. It was that way for us, too, back in 2001. Never had known a day without a plane in the sky, though just a century earlier such things were science fiction.

After 9/11, planes were grounded. There was a legitimate fear that more would be used as weapons of mass destruction, that they would be taken over by flight school students here on expired visas and used to make a political and religious statement through bloodshed.

My 9/11 memories are stark. I can close my eyes and smell the lounge where I was studying, taste the orange juice I had for breakfast, hear Peter Jennings' gasps and sighs and sheer frustration and fear. I feel the adrenaline that didn't subside for weeks after, the cramps in my calves from running up and down stairs in the campus language building to get confirmation about classes cancelling. The sweat running down the back of my neck while I ran around looking for my friend Michael, with whom I'd ridden to school that morning. We got Chick-Fil-A for lunch on our way back to my house when classes were cancelled. It tasted like sawdust.

In 2002, on the anniversary, I wrote about my impressions, a year out. "And there has been a vague sense of this same silence ever since. Helicopters, military planes - nothing is the same. An interrupted television show strikes a chord of fear - what now? What next?"

Nothing has really changed.

What now. What next.

Will the planes be flying tomorrow?

-

I have always loved flying. In tiny Cessnas, in huge commercial jets. I love the take-off and looking out over open land. It doesn't come close to my love of a cross-country road trip, but flying is a special experience. You feel the future, in the sky. You sense all the ways you are breaking the rules.

It is horrifying to know, even that beauty was twisted and used for evil.

-

I first noticed the silent skies on the ride home from the university, some four hours after the first plane hit the World Trade Center.

The empty skies.

I remember thinking how eerie it was, how unnatural. We lived right in a major flight path for DFW Airport, planes flew over our house every fifteen minutes or so.

Unnatural. Except there is nothing natural about human flight. It's a manipulation of physics, an application of human knowledge, but it is not natural.

-

My daughter spread her arms out in the car this morning as we drove down the highway. "Wheee!" she said. "Airplane!"

May she never know the horror of a silent, empty sky.

two degrees from ALS

May is ALS Awareness Month.

That very phrase strikes an odd note with me.  I feel like the concentrated publicity and public outreach that is supposed to take place during an "awareness" month should be a year-round occurrence   I mean, this is a disease that invariably kills - there is no cure.  It has no discernible pattern, except that we know it sometimes runs in families, that there may be a genetic marker, but that it also occurs randomly, it hits veterans at a greater rate than any other population segment.  You can live for decades with it - see Stephen Hawking - or just a couple of years past diagnosis - see Lou Gehrig.

So here's my pitch.  You probably don't personally know anyone with ALS.  Chances are, you probably won't in the future.  But you know me, because you're reading this blog, and my mother and my grandmother were both ALS patients.  So your connection to ALS is really just two degrees.

Christmas 2009 - Me with Mom in her hospital room.  This was thankfully the only Christmas she spent in the hospital.

Take a minute and get educated.

I don't expect everyone who learns about ALS to donate money to the cause of finding a cure.  This is one of my causes because it hit home, not because of a celebrity or even because of a neighbor or friend-of-a-friend.  Certainly not because I read some blog posts about it.  But, consider this, if you've got $10 to spare. As the disease progresses, ALS patients require full-time care.  Many need wheelchairs early on, they need  medical equipment like oxygen masks and tanks, feeding tubes, catheters, all the attendant supplies.  Some need caregivers at home, others need to be in homes.  Insurance does a lot, but it doesn't do nearly enough, and not every ALS patient has the resources of the VA like my mother did.  The ALS Association is mostly focused on research, but if you can find a way to help them or, even better, caregivers and patients directly, you're doing a lot. (updated:  in light of the Ice Bucket Challenge and ethical concerns raised about the ALSA's funding of embryonic stem cell research, I have listed out other charitable causes that you can help in this post).

I'm not the hopeful type, when we're talking about ALS.  It is really difficult to fathom a cure, when we have so few effective treatments.  But comfort, having a support group, responsible end-of-life care, these are things I think we can give ALS patients.

Consider it.

And pass on the word.

unpublished

I submitted this essay to a blog recently, and it didn't make the cut.  I spent a good amount of time trying to make the words come together - that is to say, writing - and I'd rather put this out in the world than have it languish on my hard drive.  If you've read any part of this blog, none of this is new or surprising.  This was my path to motherhood.

-

In August of 2011, I found myself doing the one thing I had spent a long time trying to avoid.

I went to my mother’s funeral in a maternity dress, because I was five months pregnant.

I wasn’t planning on getting pregnant. My mother was diagnosed with ALS, Lou Gehrig’s disease, in the fall of 2008. I was anxious to avoid the emotional upheaval of pregnancy on top of the horror of my mother’s disease. It was a horror story from my childhood, in a way. Mom had been two months pregnant with me when her own mother died, and she never got to tell her. She told me the story over the years with tears in her eyes, bitterness in her voice. On some level, I promised, it wouldn’t happen to me.

Pregnancy and motherhood are really things that all the talks and reading in the world can’t prepare you for. But age-old motherly wisdom is supposed to be helpful. I wouldn’t really know. We never talked about it, and then when it happened, my mother couldn’t talk at all.

In the spring of 2011, working long hours and not paying close attention to birth control, I got pregnant. By this time, my mother was bedridden and could no longer smile or laugh. The second I knew for sure, I called to tell her, my dad holding the phone up to her ear. He told me she looked at him and he could tell she heard me, her eyes said everything.

My mother-in-law took me shopping for maternity clothes. We looked around at the nicer dresses, ones that I could later wear while breastfeeding. She told me to pick out something pretty, for going out to dinner. I picked something black, thinking I might need it for a funeral.

It is easy to spend a lot of time worrying about what can go wrong when you’re pregnant, especially when you carry the burden of genetic disorders. We have a history in our family of spina bifida, and I wanted, needed to talk to my mother about her experience when my brother was born with it – I wanted reassurance, I wanted to hear her refute the statistics and tell me my baby would be fine. When I asked, she blinked, the last thing she could do, and her gaze shifted away.

So I asked for every test I could get, not wanting to be caught off-guard. And everything was fine – I was tired, and that was all. My doctor grinned and told me, get more sleep. You’ll need it, he said.

It was difficult to accept all of this. It was strange, to know nothing was going wrong, when it seemed everyone I knew had a horror story – up to and including my own mother. And I was cursing the timing of it all. I was sad and angry, and had a hard time with joy in those first few months.  It made me a terrible friend, and a hard person to get along with.

The call from my dad came late on a Friday afternoon. It was unbearably hot outside, the way Texas summers always are. The first time I felt nauseous while I was pregnant was in the wake of that phone call.

During her wake, I spent a lot of time answering questions about my tiny baby bump. There at the front of the room at the funeral home was Mom, and I stood in the back near the door to say hello to people. I’m so sorry to hear about Lillian, they’d say. When are you due, in the next breath. My eyes filled and I nodded and answered the questions and screamed inside that this fate should befall first Mom, then me.

My darling girl kicked and squirmed as if to joyously respond to the proceedings, saying life goes on, telling me she would be there soon to cheer me up. In January, she arrived on time and healthy, and brought with her laughter and joy that was hard to fathom mere months earlier.

Mom and I were not very close, in those last few years, and every day I wish I could talk to her about this strange new world that she traversed before me. Motherhood took me mere months after she was released from it, and that transition has been poignant.

Unwittingly, Mom did leave me with one final lesson in those hard, bright August days. Motherhood is full of the unexpected; that is practically the textbook definition. And for every hard thing we must do, there is a smiling, kicking, giggling prize to balance it out.

another first

This morning was a big one for me and Annalise.  It was the first time I dropped her off with a babysitter who wasn't her grandmother.

The first time I left Annalise with her grandmother, my mother-in-law, for a day was just after she turned one month old.  And it was weird, definitely, but I wasn't sad.  In fact, here's a good Mommy Confession - the very first time I was away from my daughter for more than a half hour, I was elated.  I was a grown-up again, out of the house, driving!  Dressing up for meetings!  Talking about something other than breastmilk and diapers!  I was happy to have her back in my arms that evening, but I didn't really mourn the hours "lost" either.  Neither did Annalise, who stared wide-eyed at the new toys at Grandma's and was spoiled and cuddled to the content of both.  And it stayed that way for over a year, until a lot of circumstances called for a change.

Today, when Annalise figured out Mum-mum was leaving her with a stranger, she cried, and I scurried out the door, cognizant of two things.  One, if I stayed to comfort her, I would ultimately make it worse, because I would need to leave eventually.  Two, that I had left my makeup bag at home, and my mascara was not going to last very much longer.

It was fine, of course, in the end.  She had a great day with her new babysitter, who has her own daughter, and a tame, kid-loving cat.  Lots of fun to be had, new things to explore, and a whole day in which to do it.  And I was fine once I was on the road (more specifically, once I got a comforting text message from my husband reminding me that I was going to be just fine).

So there it is, another first in our book.  Our day ended in a very regular way - Annalise wanted to be read to (tonight it was James and the Giant Peach, for about ten minutes, and then a variety from her growing Dr. Seuss collection), and she cuddled and hummed and played with my fingers as she dropped off to sleep.

fox in socks

Ever since Annalise began to crawl, she gravitated toward the many (many!) books in our house.  She was pulling them off shelves and flipping through them almost immediately.  And when she started walking a few months ago, there really was no stopping her.  To the books she would go.

Of course, I can't describe the elation I feel about this.  When asked what my daughter's favorite toys are, the answer is usually "books, Minnie Mouse, her caterpillar pull toy, and books."  She's fascinated by the sound pages make as they are flipped. She likes her board books, too, for chewing mostly, but also the bright pictures - she's started pointing at them and saying "dat?" to get answers from us.  Need a distraction during a diaper change?  The mini board book collection she has is perfect.

In the last couple of weeks, she's started searching for specific books and putting them in our hands to be read.  The two most popular are "Sleepytime with Rory" by Chris Friden and "Fox in Socks" by Dr. Seuss.  

I know from personal experience that repetition like this is great for the budding reader.  Yes, she's far away from that stage, but this is all instructive in one way or another for her tiny mind.  Who knows what wonders in literature lie in her future, all because she started out by asking us ("Dat-da, dee?" or "Mum-mum, dee?")  if we would read her favorite books to her again and again.

So no matter how many times we put Rory to bed with Flicker, or how many beetle battle puddles my tongue trips over, I'm happy to comply with my daughter's requests. 

third fencepost

Once upon a time, I was a Girl Scout.

I have so many fond memories of my 12 (!!) years in Scouting that I could honestly dedicate this blog to little else.  Mom came up to me one day, right at the beginning of first grade, and said to me and my friend Oni, who stayed at our house sometimes after school, "How would you girls like to be Brownies?"  And I remember jumping up and Oni jumping up and both of us giggling and excited.  We definitely wanted to be Brownies!

Mom was my troop leader all through Brownies.  Then we moved to Missouri, and I joined a Junior troop there for the short time we stayed.  Then it was back to Oklahoma, and I was an active Junior there, too.  Camping, cookie sales, crafts, all-nighters with dear, dear friends.  There are so many stories there.

When I crossed over to Cadettes, however, well, that was when the fun really started.

Cadette Troop 121 on one of our
many adventures

Not many girls stay involved once they hit junior high.  I joined a Cadette troop that was, I believe, no more than seven or eight strong at the beginning.  It was the best possible troop experience I think anyone could have.  The leader was a young woman, a teacher, named Leanna.  She was living at home with her folks, Barbara and Bob, who were also really involved in Scouting - both Girl Scouts and, until their son was no longer involved, Boy Scouts.  Barbara and Bob served as co-leaders.  

"Ladybug" at Camp Kate Portwood
in Altus, OK, spring 1994

We were a camping, crafting, cookie-selling kind of troop.  If there was something we could do, we did it.  I learned a lot about leadership, about friendship, about teamwork - this family of Girl Scout leaders taught us all so much.  

Barbara, or "Ladybug" as she was affectionately known, was a force to behold.  She was the consummate volunteer, and she loved kids.  She loved showing us what she knew, whether it was camp cooking or sewing or skits or songs.  She was a wonderful woman who helped show me a bigger world, and I remember her with a lot of love.  

Barbara, and Leanna, were incredibly influential women in my life during a period where it was difficult to find connections.  Adolescence sucks, as I'm sure you'll all remember.  Being a Girl Scout, in that troop, with those ladies (and my wonderful friends, especially Keri Dawn and Juanita), was life-altering, in the best ways.  

A postcard from Our Chalet in
Switzerland, dated October 2000

Barbara kept in touch over the years - I got the occasional postcard from overseas adventures, from trips she and Bob took to visit friends or do Girl Scout things.  I got Christmas letters and sometimes other notes. And then, after a long period with little contact, we reconnected over Facebook.  You can't tell me social media doesn't serve a greater purpose - being back in touch with Barbara and Bob and Leanna, while it hasn't been extensive contact and I haven't seen any of them in nearly twenty years, has been incredible.

Fifteen months ago, Barbara went to the doctor for an eye exam, and came out with a diagnosis of brain cancer.  She was given eleven weeks to live.  She beat the cancer back with radiation and chemo and a ton of prayer from warriors she knows literally all over the world.  But the Lord called her home this morning.  I found out from Leanna on Facebook while I was, ironically, doing something the two of them taught me to do - leading a meeting of women.

All day long, as I was out doing the things that I feel Girl Scouting, and especially Barbara Thompson, taught me to do, I thought of her, and her laugh, her irrepressible optimism and good attitude.  Her encouragement, her determination, her giving spirit.  

We learned a song, my last summer in Troop 121, that has been in my head all day.

"I've been sitting here thinking about leaving,

Just when I wanted to stay the most.

So I went outside and left a piece of my heart

Buried by the third fencepost.

When tomorrow morning comes

I'll be smiling

Though I might feel a little down.

Though my body's leaving,

I'll still be around."

Rest in peace, my dear, dear friend.

going forward

I am at a crossroads.

This blog has actually been a few different things since I started it.  Way back when, it was a pretty tame "cooking" blog.  And it was a "musings" blog.  Then, during my mother's last summer, it was a blog for grief.

I have no idea what it is now, except an empty blog.

Life, lately, is as expected.  Messy and busy and noisy, routine but unplanned, mostly without structure.  That's about to change - I'm taking on part-time work as a kind of IT efficiency guru two days a week, and thus begins a pattern for Annalise's toddlerhood.  I spent the better part of last week researching child care options and preschool - preschool! - and woke up Saturday thinking, when did this happen?  When did we become parents?  That is, undoubtedly, not the last time I will think that, and it certainly was not the first.

Is this worth writing about?  Maybe.

Going forward, this blog may just stay here as is, a kind of testament to making it through the last year and a half.  I would like to say I have an idea for continuing - and I do - but whether I have the time and the real motivation to do anything remains to be seen.

The funny thing about writing professionally has been that my own, more personal writing took a serious nose-dive.  Anything I wasn't, am not, getting paid to write languishes.  That's sad.  That's really sad.  It makes me think of how people in deep academic study find that they no longer read for pleasure.  The act of reading to learn eliminated the thirst to read for no reason at all.

Does the act of writing for profit eliminate the need to purge oneself of an overabundance of words?   I wonder.

For now, I hit "publish," and see what else may come.

one year

In thinking about what to post, I found myself dwelling on this odd fact of today.  It's August 19, and it has been one year exactly since my mother passed away.

I thought today might be an emotional wreck of a day; I thought maybe I'd find a way to commemorate it beyond writing, in what I cooked for dinner or what I watched on television or what I read or something.

But it was a very typical Sunday.  We got up for church, took the longer route home, played with Annalise, took naps and watched sports.  Coincidentally, the Yankees are playing the Red Sox tonight and they're winning - because Mom would not have it any other way, of course.

I haven't been melancholy or really even sad, and I wondered why.

Not that it took much to figure that out.  August 19 has the fact of Mom's death - but other days have the distinction of being the really terrible days.

September 9, 2008 was the day she sent me an email confirming that she had ALS.  Mother's Day 2008 was the day I knew that she did.  I think those two dates stand out as the absolute worst for me; those were the days I knew I was losing her, because there is no coming back from ALS.  Not yet, and maybe not ever.

Thanksgiving 2008.  The last time Mom and I went shopping together - we went to the mall to find Christmas stockings for my house

Christmas 2008.  The only time Mom ever got to see my house and spend Christmas with us in Austin.

January 12, 2009 was the last time she sent me an email - it was to ask if I could find her a Texas flag for her garden and to ask what I wanted for my birthday.

In November 2009, Mom went to the hospital for pneumonia for the third time in two months, and didn't make it out until January 2010.  She coded upon arrival at the hospital and Dad had a huge fight with the doctors over whether to take Mom off a ventilator.  She had to get a tracheotomy as a compromise.  This was the start of the final decline - she had at least one stroke during that time, and she also had problems with dementia.  When she came home in January, she never left her bed again.

March 3, 2010.  The last time anyone told me that Mom laughed.

July 27, 2010, the doctors told Dad they thought Mom had lung cancer.  Then in August they decided maybe she didn't.  Then, when she passed, they confirmed that she did.

All of this to say, it's been more than a year.  It's been nearly four years, in reality.  There are too many anniversaries and too many stumbling points, things that make me miss her and hurt that she's not here.  August 19 is the day that she was set free - she no longer had to go through this, and she was released of all pain and suffering and doubt.  She opened her eyes in a better world.

One year.  This isn't everything I want to say, but it's enough for the moment.

hometown

Given that I'm such a fanatic about my adopted home state, it comes as a surprise to an awful lot of people when I reveal that I'm actually from Kansas City.

It usually comes to light because I meet someone from Missouri, and we get to talking about it, going to the Plaza at Christmas and about barbeque and jazz and the hellish commute from the KC airport to whatever suburb they live in.  Occasionally, though, it will come out when we're talking baseball.  

I've waxed poetic about the New York Yankees often enough, but that's a different kind of nostalgia and love, wrapped up in memories of my mom.  The Kansas City Royals were my first love.  You know what they say about first loves.  

I was five years old when the Royals last won the World Series.  And I remember it, in the fuzzy, warm way you remember those formative happy things in your life.  I was obsessed with the game, thanks to guys like George Brett and Bret Saberhagen and Hal McRae and Steve "Bye-Bye" Balboni.  I remember the pride that came with that win, and I remember wanting to be a baseball player when I grew up.  The Royals were my team for a long, long time.

When I was nine, I got to take a tour of what was then called "Royals Stadium" and I made a huge deal out of finding THE SPOT on the bench where I knew my hero, George Brett, always sat.  That summer, my parents took all four of us kids to see the Royals play the Indians - and I remember odd things about that day.  I had told my grandmother that I wasn't so sure the Royals were going to win that day (the Indians had been on a streak, I think) and she lectured me about being loyal to one's home team.  I remember that Bret Saberhagen pitched that day, and that the Royals did lose - and that the pitcher for Cleveland was Greg Swindell, the Texas Longhorn pitcher (my husband and I tracked this down - Swindell only pitched once in Kansas City, and it was that day).  I remember Bo Jackson waving to the crowd, I remember losing my voice cheering for George Brett (because he was RIGHT THERE, at first base), and I remember very clearly the smell of hot dogs and cotton candy and my mom saying repeatedly that we didn't need any of that "spun sugar."  I also think that may have been the one day they let us try it, though.  

You don't forget your first time.

The Royals aren't the same team they were even in 1989.  They've not been much more than a spoiler team, the team you're "supposed to" beat and that might mess up your division lead down the stretch, but they certainly won't be there in October to give you grief.  And I moved on to the Rangers and the Yankees, but the Royals have this place in my heart.  I remember going to an Oklahoma City 89ers game once, and Steve Balboni was there in the dying days of his career, and our whole family was cheering wildly for him, the way you can and do at a minor league game, and we none of us cared who else was on the field that day.  I have a powder blue George Brett jersey t-shirt that doesn't really fit me well, but I wear anyway, and a Kansas City pennant I got at that first game, and a commemorative team poster from the 25th anniversary of that one wonderful World Series victory.  Those are my only Royals relics, because somewhere along the way my Bret Saberhagen Starting Line-Up figure got lost or sold and my baseball cards were scattered to the winds.  

George Brett was a Kansas City Royal for 21 years, his whole career, and when he's on television like he has been in the last couple days, while Kansas City gets its last hurrah, it's hard not to feel a rush of glee and joy and fierce pride, because those boys were tough and they were good and they were so fun to watch.  

While MLB passes through Kansas City this week and baseball fans everywhere are oogling Kauffman Stadium from afar, I'm watching and thinking about all of my family there, and about how baseball and my family are the same thing to me.  I'm thinking of Mom and Dad at that first-ever game, and all the games after.  Mom's in my head tonight - "Michele, there he is!  That's Bye-Bye Balboni!  Stand up and cheer!"

--

A last thought.  Last week, on the Fourth of July, my dad's uncle Patty Joe passed away.  He'll be buried this week in Kansas City.  I miss my Kansas City family, who I never see enough.  The last time I was there was also the last time I saw my great-uncle, when Randy and I went with my grandparents to take him to dinner for his birthday.  Patty Joe was one of the great characters, and he'll be missed quite a lot.    

pork roast

The best experiments are clearly the ones that happen by necessity.

I had this pork roast in the freezer that needed to be eaten.  Now, roast in the summer is a daunting prospect, and I didn't particularly want to make pork tacos.  So I searched for a recipe I could use that might be flavorful but not too heavy.  I landed on this one from Pioneer Woman.

I had beef stock in the fridge and plenty of onions and apples, so all I got at the store was apple juice.  And then I got home.  Not apple juice at all, but white grape juice!  I sighed and shrugged and decided to just use it.  And then I opened the beef stock and it had a layer of mold on it.  Ew.  So, chicken broth had to suffice.

The result is a lighter, sweet version of the dish.  I used a liberal amount of rosemary in the mix as well, and it really does taste good.

Yay, necessity!

tomato sauce

There is a chance I may be looking to go back to work in an office full-time.  I don't think I want to talk about that prospect - there's a lot of baggage tied up in it.  But for the time being, I'm a work-at-home mom, and the "at-home" part has kept me particularly busy in the last few days.  I'm determined to try different ways of doing simple things.  I already do a lot of cooking and am easing into more baking - the kitchen is definitely where I feel most at ease.  Not just in terms of confidence, either.  The kitchen makes me feel like an adult in the way few places do, while being really familiar and comforting at the same time.  

To that end, my Susie Homemaker adventures in the last few days have more or less centered in the kitchen.

1 - Making baby food. Pears last week, this week it will be sweet potatoes. I'm thinking about making teething cookies, too, though the rice husks work for now. I'm also going to let the Padawan have banana slices, see if she prefers that to the puree.

2 - Homemade pesticide. We're growing tomatoes and squash this year (though the squash isn't doing as well as we'd hoped), and of course we now have a host of weird bugs in the garden. I want my tomatoes to survive, so I'm trying hot peppers, garlic, and water. It's steeping tonight so we'll see how it works later this week!

3 - Tomato sauce. So many tomatoes, what to do?! We're growing cherry tomatoes, which I use all the time (they make an awesome snack, especially with a little balsamic vinegar). But we have bigger tomatoes, too, which are harder for me to incorporate. So, sauce! First batch on the stove. I'm hoping to eventually have enough tomatoes to can my sauce. Mom didn't can, but she did make up batches and freeze them for later use - and she never used fresh tomatoes that I can recall, so I'm stepping out a little here. Yay me :-)

Next up, some short-term projects and long-term ones, not all kitchen-centered.

1 - Vinegar/dish soap solution for the weird grime in my tub that isn't coming up with 409 (or anything else for that matter).

2 - Sewing lessons at some point. I finally got my mom's sewing machine from my sister, and I want to learn to use it properly. 

3 - Once that's accomplished, my first project will be curtains for my dining room.  Then, I want to make some clothes for Annalise.  Mom made a lot of our dresses and even some everyday clothes when we were little, and she also made Barbie clothes occasionally.  There are a lot of other reasons I want to master the sewing machine - I have a load of adorable skirts that I don't want to get rid of, and would rather alter on my own to get more use out of them.

4 - Practice making kolaches. This is a baking skill I want to master, because I think it would be very cool to be able to do it.

I feel useful and happy when I'm doing these kinds of projects - even just cleaning my house can make me feel good (unless it's dusting - I hate dusting - or cleaning the toilet).  Something about the productivity, I guess.  Anyway, I have no intention of taking advantage of modern conveniences if they don't add value to our lives.  If I'm happier making sauce and sewing dresses, so much the better (and less expensive!).

solids

Mom wrote a note in my baby book, saying I had my first solid food (rice cereal) at 2 months old.  I can't quite imagine what my daughter's doctor would say about this, since the "recommended" age now is 4-6 months, and she told us at Annalise's 4-month appointment that we could hold off if we weren't comfortable yet.

Well, comfortable or not, Annalise started grabbing french fries a few weeks ago, and munched on a stolen Wheat Thin yesterday.  We had decided to hold off until we could buy a high chair, which we did before heading out to the Republican state convention last week.  Today, Annalise tried "solid" baby food - basically whole grain cereal with apples.  She loved it, I'm happy to report.

Annalise after her first few bites of "real" food

It does amaze me, the difference in opinions about what is "right" for babies over time.  In truth, I was pretty against the idea of rice cereal at all, because the only reason it has become a traditional first solid is because of allergy fears.  I have met women who think it's literally the only food you can feed a baby at this age, which is just not true.  This weekend I'm breaking out the Baby Bullet my best friend got us and I'll puree bananas for Annalise to try next.  The way she gummed that Wheat Thin yesterday really had me thinking about what expectations we have about children, versus the anecdotes we always hear - my brother, for instance, was one of those kids who skipped purees altogether (and these days that's an actual trend).  I'm not going to hold back with Annalise.  If she's ready for something, she'll let us know.  This has been our way of doing things for awhile now, and all the guilt I felt when one of the "book methods" didn't work for us fled.   And my daughter is thriving to boot.

It would be wonderful to have Mom's opinion on all of this.  She had four of us, after all, and experienced a wide range of tastes, habits, and "firsts."  Thankfully, she wrote some of it down in my baby book - and I try to do the same for Annalise.

mother's day

Four years ago today, I had the most memorable phone conversation I ever experienced with my mother.  I had called her to wish her a happy Mother's Day.  Our conversation was short, maybe ten minutes long.  I did most of the talking.  When she spoke, I couldn't understand her.  I turned up the volume, I asked her to repeat herself, I wondered for a minute if my hearing was bad.  When we hung up, I looked over at my husband and said, "I think something is wrong with Mom."

That was the day that the months, probably years, of subtle signs of her illness became glaring.  Mom's speech was slurred and thick.  I remember telling Randy that I thought she sounded drunk, and that was absurd, because she didn't really drink, and it was midday besides.  As the day wore on, the dread sunk in, became fear.  Before the week was out, I had emailed my dad to tell him I thought she might have ALS.  She had a doctor's appointment coming up and I wanted to make sure someone told the doctor this.  Because you know, there is no test for it.  There's just elimination.  They test you for cancer, for thyroid disease, heart disease, for obscure nerve illnesses.  Mom's official diagnosis happened in September 2008.  But the day that sticks in my heart is Mother's Day.

I can't help feeling that this day is always going to be haunted.  But when Randy brought Annalise into our room this morning to wake me up, her dimples and giggle put things right.  I won't pretend today wasn't bittersweet, because it was.  My little girl, though, gave me a day to remember that balances that terrible moment.

All I can tell you today is to hug your mom.  Call her.  Listen to her voice.  I promise it won't be a wasted moment.  I used to think such pleas and reminders were terribly cliche - and maybe they are, but there are so many of us who can't call our mothers today.

Also, fittingly, May is ALS Awareness Month.  Take a moment to find out what this disease is and what it has done to too many families.

Finally - Mom and me, in 1981.

sugar substitute

In the last few weeks, I've been getting text messages from my brother, who is finding out what it's like to have to cook for himself (or, for him and our sister Katie) on a regular basis.  To call this monumental would not be an overstatement, believe me.

Tonight's revelation was that they intend to make "Mom's cookies" sometime in the near future.  Cookies are a treat, though they were certainly a staple when I was growing up - Mom's Cookie Monster cookie jar was usually full.  My mother's cookies were world-famous - meaning that our extended family always requested them at holidays, and friends raided the cookie jar whenever they could.  Everyone wanted her recipe, and she would smirk a little when revealing that it was just the Toll House recipe, made with the sugar substitute fructose.  She also used butter-flavored Crisco, a habit I think developed from that WWII rationing mentality that her mother undoubtedly had in spades (take a look sometime at the housewife cookbooks of the era - shortening is in everything!).

I started making Mom's cookies when I was still in college; I considered it one of those passages to adulthood to be able to make my own chocolate chip cookies.  I have altered Mom's method a bit, too. I stopped using fructose in cookies when I couldn't find it in the stores any longer, and opted for various sugar substitutes over time.   One thing I can caution is never to use Splenda for baking, it just tastes so much different; I like baking with Truvia.  I also always use real butter.  I'm more likely to make "cookie cake" (the pan cookie variation on the back of your Toll House chocolate chip bag) and for that I use real sugar like Mom did.  For chemical reasons unknown, sugar substitutes don't work as well in the pan cookies.

When Joe sent tonight's text about the cookies, I was tempted to launch into this explanation for him.  I did tell him I use a different sugar substitute than Mom did, and he laughed at me and said that was blasphemy.  I smiled.  He'll figure it out, or he won't.  Mom's traditions and habits worked for her at the time she was doing them - not all of them work for us, or should.  And we can invoke the same flavor with just a little tweak, maybe even improve on it.  Change can be a good thing, I want to tell him.  But I do understand.    How many bowls of cookie dough did we lick clean, how many times did we sit in the kitchen while she stirred, how many chocolate chips did we poach from the open bags?  Making Mom's cookies is like inviting her back into the room.

In the end, there really isn't a substitute for that.