Twenty Years

I have no idea how twenty years could have passed so quickly. Twenty years ago today, my father left our earthly world. Twenty years ago. In twenty years, he didn't see the rest of his grandchildren, the rest of his great-grandchildren, or his great-great-grandchildren. He didn't see my husband and me move back from Chicago.

My dad was a funny guy; always cracking jokes and puns (so now you know where I get THAT from). I remember one time he pulled me aside, away from the “real” adult women (my mom, my aunt, and my cousin) to tell me this joke: “You heard how Vanna White lost her virginity on a golf course? Talk about a hole in ONE”.

I was simultaneously mortified and pleased. To this day, I wonder why he told me that joke, but none of the other women who were there. Maybe he knew that my love of all kinds of humor was ingrained (from him, of course). For whatever reason, he didn't want to tell it to everyone. I never did ask him why. I'm sure it was a fleeting moment for him, but it was a profound moment for me. He saw me as an adult. Or, at least adult enough to hear a somewhat off-color joke.

Growing up, we only had one bathroom. Whenever I'd get ready to take a shower, I'd always announce my intentions. “I'm going to take a shower”, so if anyone had to use the bathroom, they had fair warning. My dad's response was always the same. “Put it back”.

So many things I miss. That chuckle at his own jokes. The never-ending puns. His voice.

I really wish he could have known my kids, I wish he could have seen my daughter dance or my son play guitar. He wasn't extremely vocal about it, but he was extremely proud of his family.

My dad was very old-school. He fought in WWII, and was raised in an era where men did “man stuff”. When I'd say “I love you, dad”, he'd say “You're only saying that 'cuz it's true”. I remember he was in the hospital one time and I said that I loved him when I was leaving. He said, “I love you too”. I cried all the way home because I thought that was it.

I was in high school. My mom was at my sister's house, so it was just my dad and me at home. I had an afternoon exam that day, so like most teenagers, I slept as long as I could. When I came down from my room, I noticed odd things that I tried to explain away. My dad's car was in the driveway (maybe he got a ride with Earl). His lunch that I made was in the fridge (maybe he forgot it). His cigarettes and lighter were home (maybe he forgot those too??). Our neighbors' telephone number was in a very visible place (okay, LouAnn, call the number). No answer. Both neighbors were at work. Call my grandma. All she would tell me is that my sister was bringing my mom home, and they should be home in a couple of hours. Why? Mom's not supposed to come home until (I don't remember, but it wasn't that day).

The rest of that day is kind of a blur, but what had transpired was that my dad was having a heart attack. Rather than call an ambulance, he called the neighbor to take him to the hospital. That's why the neighbors' phone number was out. Later that day, when I went to visit him in the hospital, he asked me “Don't you remember me yelling up that I was leaving for the hospital”?

Well, yes, I remembered, but I assumed he meant he was leaving for work. I never heard the word “hospital”. I'm sure he told me, but the word never registered. It was that hospital visit when I said “I love you”, and he said, “I love you, too”. I was terrified that he wouldn't come home.

But he did come home. He was around for a good many years.

He went through a lot in his time on earth. A LOT. For all of the poking, prodding, cutting, drawing of blood, he never complained. He never said, “why me”. At least not to any of us.

The last night up at the hospital was a goofy night. Wheel of Fortune was on the TV, and my mom, sister, brother and I were winding down our visit. My sister and I were mocking the contestants, jumping up and down, and my dad was smiling a lot. We left knowing that my dad had a good night. We had no idea it would be his last night. Sometime in the middle of the night, we got The Call.

Twenty years ago today.

Now my mom and dad are reunited.

Have I Learned My Lesson?

After my lesson about pointe shoes, I had my first tap lesson last night. Hmm? Why did I need a lesson on pointe shoes? Oh, my daughter is taking pointe this year for the first time. There's a right way to attach the ribbons and elastic, and a wrong way to attach them. There's a good chance the dancer could get hurt if said items aren't properly attached. Also, the teacher wanted to fit the shoes on each girl because again, injuries can occur without the proper fit.

We got her pointe shoes at the same dance store as the other families, but for some reason, most of the families had ill-fitting shoes. One mom said her daughter tried on over 20 pairs before finding shoes, and her daughter's shoes were in the bunch that didn't fit properly. Only 2 or 3 girls of about 10 had their shoes fitted correctly. I'd be very unhappy if my daughter's shoes didn't fit right. You trust the people at the dance store to know what they are doing, especially when it comes to pointe shoes.

Anyway, my tap lesson.

The lesson was for adult beginners, but I was at a disadvantage on so many levels just tying my shoes. I mentioned that I tried tap years ago, but it wasn't a beginner class so I was always lost. Much has changed within my body from years ago, but it happened so gradually that I adjusted to it in my everyday way of life. It's not until you try something new that you realize how far off you really are. Also, I'm pretty sure that all of the other people had some experience tapping, even from childhood. My dance “career” ended when I broke my leg in March of first grade, and I was in a non-weight-bearing cast on crutches for 6 weeks. I never really made it past tick tock down and toe heel, toe heel.

As you can tell, I did survive the class, and my body doesn't feel any worse today. So far. How did I do? In a word, terrible! Some of the steps showed me precisely how bad my balance is. Some of the steps showed me that my coordination is sporadic; I'll get a step, then, bam! My legs say, “nope”. My mind was telling my feet "shuffle shuffle shuffle", but my leg was doing "shuf-fle shuf-fle shuf-fle". At one point, I asked for a barre because I thought that might help to steady my balance on the side shuffles. Didn't really help.

But you know what? I did it. I stayed for the whole class, and I actually got the hang of some of it. I might even be able to catch on more as the year progresses. Or not. I am, however, willing to give it a go.

Part of my problem is trying to get my body to move the way I'm telling it to move. My head keeps saying, “Oh yeah, piece of cake! We got this”. My body is saying, “Whoa, let's just take this a liiiiittle slower there, sweetie”. It may be due to the MS, or it might just be because I'm learning. Time will tell, right? I'm going to keep at it until my body just won't do it because you know what? I had fun, and it was something I did just for me. I didn't do it because I had to, or it was recommended, or my family would appreciate it, I did it for fun. For me. 

A Day Like Today

Today has already been quite the day, and it's still morning. It was the first day back to school for students in our district. I said the first day for students because teachers had to report last Thursday.

My day started early; my kids like to get up at 6:00 am on school days, and I like to have some coffee in solitude, so I was up long before I woke them. The coffee in solitude lets me wake up gradually and not answer the inevitable “where's XYZ” questions as soon as I wake up. I'm much less snappish after coffee (notice I didn't say that I'm cheerful, or perky), and no one wants to start their day sharing space with a grump.

So, I woke up my twelve-year-old daughter for her first day of high school. High school!!

I could write an entire post about time flying, children growing up too fast for my liking, or being torn between wanting them to stay little yet wanting them to experience their own adventures. Those of you who have kids already know all of those things. Those of you who don't have kids probably aren't very interested. Anyway, that's a post for another day, maybe.

Next, I woke up my ten-year-old sixth-grade son.

I walked my daughter to the bus stop because in the city where we live, the high school students who attend public school take public transportation. As I watched her get on the bus, I started feeling the hot sting in my eyes, the knot in my stomach, and the lump in my throat. What was I doing sending my precious baby downtown on the metro bus?! By the time I got home, I was mostly recovered, except for the lump in my throat. Soon it was time to walk my son to the bus stop. He still rides the school bus, so the pangs from earlier weren't there. They won't be for a few years.

After having more coffee, I started making notes and doing (more) research. Why was I doing that? I'm glad you asked.

A few days ago a very good friend told me that a writer was searching for people to interview who are living with a chronic illness. The focus of the article is on the financial toll it takes when you live with a chronic illness. I contacted the writer, and, in my infinite wisdom, set up a phone call interview for this morning.

I was actually nervous about it. I couldn't believe I was nervous, but I was. Before today, I'd never been interviewed for a national publication. It was also my first time being interviewed about having MS, or anything to do with having MS.

The writer called exactly at the scheduled time, and we talked. She didn't ask as many questions as I thought she would; she just kind of let me tell my story. I gave her some information that she hadn't known before speaking with me, so I think there's a pretty good chance she will use parts of our conversation for her article. I suppose time will tell, but she told me she would send me a link to the finished article. I'll post it when I see it. 

That's been my day so far, and it's barely after noon. I think I'm ready for a nap.

Oh, in case you're curious, here's a table from NPR.

Multiple Sclerosis Drugs Cost Much More Today Than When They Were First Introduced

DRUG	DATE APPROVED	INITIAL COST(IN 2013 DOLLARS)	2013 COST	INCREASE
Interferon-β-1b (Betaseron)	7/23/1993	$18,591	$61,529	231.0%
Interferon-β-1a IM (Avonex)	5/17/1996	$12,951	$62,394	381.8%
Glatiramer acetate (Copaxone)	12/20/1996	$12,312	$59,158	380.5%
Interferon-β-1a SC (Rebif)	3/7/2002	$19,763	$66,394	236.0%
Natalizumab (Tysabri)	11/23/2004	$31,879	$64,233	101.5%
Interferon-β-1b (Extavia)	8/14/2009	$35,644	$51,427	44.3%
Fingolimod (Gilenya)	9/21/2010	$54,245	$63,806	17.6%
Teriflunomide (Aubagio)	9/12/2012	$48,349	$57,553	19.0%
Dimethyl fumarate (Tecfidera)	3/27/2013	$57,816	$63,315	9.5%

Notes

Tappa Tappa Tappa

The dance school where my daughter has been dancing since 2007 is offering adult beginner tap lessons this year. I'm seriously contemplating taking lessons.

A few years ago, I decided to try a tap dancing class. I bought the shoes and went to several classes. I ended up dropping the class because it was NOT a beginner class, and I just couldn't keep up. I was almost always lost, and it was a performing class; meaning you'd be in the recital. I'm hoping with a beginner class, I won't feel so uncoordinated. I'm assuming it's a non-performing class as well, so I won't have mountains of pressure.

The timing of the class is darn near perfect, too. It's during my daughter's last class of the night, so I'd HAVE to go to the studio anyway, I'd just have to leave earlier for my class.

Since my daughter has been dancing there so long, I know lots of other people from the studio, including some who are also thinking of, or already committed to taking the class. I won't be alone, lost in a sea of unfamiliar faces. There are so many pros that I'm pretty sure my decision is made.

Ahhh, but the cons. The more glaringly obvious questions are whether I have the stamina and balance to take tap lessons. Will my tingling legs interfere with tapping? Will my fatigue keep me home? Will I cramp more? I suppose it will be a matter of trial and error. I'll just have to see if my body can do it.

I have always wanted to be able to tap dance. I don't know what it is about tap dancing that it holds such a fascination for me, but I love it. Maybe it's from watching all the Fred Astaire, Bing Crosby, Gene Kelly and Danny Kaye musicals as a kid, I don't know. Do I expect to be even as good as the bad dancers from those musicals? Not a chance in Hades!

When we did The Great Purge earlier this year, I had my tap shoes in my hand to donate. The reason I kept them as long as I did was because I thought I'd pass them along to my daughter when her class switched over to tap oxfords. Little did I know back then that her shoe size would be way beyond my shoe size by the time her class went to oxfords. But, I kept them, for no good reason, actually.

Except that maybe in the back of my mind, or deep in my heart I was hoping that the studio would offer beginner classes.

So, here we are, looking forward to another year of dance, only this year (hopefully, maybe), I won't be just a dance Mom*. I'll be a dancer. Sort of. Okay, well, even if I'm not an actual dancer (meaning if I'm truly awful at dancing), I won't be just sitting on the sidelines.

I'm reminded of an episode of Friends (season 1, episode 21) when Monica had her credit card stolen. The woman who stole her credit card signed up for tap lessons, and naturally Monica wanted to go to the studio to see the woman living a life more interesting than hers on her credit card. At the end of the episode, the teacher says to Monica, “You're doing it wrong”!

Monica replies, “Yeah, but I'm doing it”!

I imagine that's much how my dancing will go.

*Oh, and for those of you familiar with reality TV, I'm not that kind of dance Mom. I happen to have a daughter who dances, ergo, I'm a dance Mom.

The Battle of Who Cares

Aside from the obvious day-to-day struggles I go through all the time, I've been battling a much stronger force; the battle of “who cares”. The battle of “who cares” is a tough fight because when I sit down to write, the voice is screaming at me, “WHO CARES”!

When I started writing last summer, I told myself that I was writing for myself, and I meant it. I'm still writing for myself, but I don't want to write boring or uninteresting stuff, either. I've temporarily lost my perspective.

As awful as my experience was with Copaxone, it certainly made for some interesting stories. No, I'm not willing to go back on the Copaxone just for more interesting ideas. I'll stay on the side-effect-free Tecfidera until my blood work tells me otherwise, thank you very much.

I don't think the Tecfidera is helping exactly because I've had some fairly major flares, but I've also had life-changing events. It's impossible to know if the exacerbation would have been worse without the Tecfidera.

Today, I have a weird pain in my left elbow. It feels like I hit my funny bone really hard. It hurts and tingles at the same time. I don't recall hitting my elbow hard enough for this to be happening, but who knows? I took some Tylenol, so hopefully the pain will subside, at least a little.

I keep digging for my muchness- at least the muchness that I have left- but so far I'm coming up empty-handed. I'm feeling like the bag of potato chips I recently bought. The idea of potato chips was in the bag, but the chips themselves were tiny excuses for chips.

I'm thinking the best way to get over this would be to keep plugging away at the keyboard. So that's what I'm doing. Even if a post isn't exactly what I was expecting, I've got to start somewhere, right?

So for today, this is what I've got. It ain't much, but until my muchness surfaces, it will have to do.

It's a Funny Old World

“It's a funny old world”

-Margaret Thatcher

I woke up this morning at 4:26, unable to go back to sleep. I tried for a while, tossed and turned in the bed, laid on the couch, but ultimately ended up making coffee. While I was sitting here drinking my coffee, I heard an unusual sound.

I went to the window, and it was a very fine rain. The kind of rain that would barely get you wet, even if you stood in it for an hour. As I was looking out the window, I noticed that the windows on my husband's car were open a little.

I remembered him telling me last night that he was going to close them, but apparently, his memory is wired like mine, and he must have forgotten to close them. I never noticed last night when we came home from shopping for school clothes that they were still open.

Okay, so the reason I had to get up so early was because I had to close the windows, and with that completed, I should be able to go back to sleep, right? Nope. Here I sit, un-asleep and un-amused.

Sometimes when I wake up earlier than I have to or want to, I feel rested; I feel like I've slept enough even though I really haven't. Today is not one of those times. I suppose it's a good thing there isn't much going on today.

My son has his end-of-hockey celebration today. His team won the championship and all the kids played great.

Today they get to skate for fun, have some pizza and spend one last time together as a team. My husband usually does hockey and football duty. We alternated baseball, and I took care of cross country and boxing. Evidently, I said all that to basically tell you that I'm off the hook from outside responsibility today. Good thing, too, because my head is very fuzzy.

As I casually mentioned, we started back to school shopping last night. Right before my daughter and I were leaving, I asked my son if he wanted to go with us. He's been saying that he doesn't need any clothes, but I'm noticing some of his shirts are getting short. He asked if he there were shoes at the store we were going to because that's all he wanted; new sneakers.

My son was so funny and sweet last night. He found 2 pairs of sneakers that he loved (by my favorite designer, on sale. Thank you Rita Rudner), I said that we should at least look at clothes since we were there. He was like a pinball bouncing from display to display. If I would have let him, he would have bought one of everything. I let him get some things, and he kept hugging me and thanking me. He was soooo excited!

My daughter found some cute things, and was lamenting that she couldn't get a “fashion backpack”. Since she started her current school, I've been buying heavy-duty backpacks because she always had so much to bring back and forth. I noticed last year that the loads have been lighter, so I said she could get one. It's really cute; buffalo plaid, many pockets, and a pom-pom hanging down.

You would have thought I bought her the world! The world with a pom-pom dangling from it.

I love how my kids are so appreciative. When they were at camp, my husband and I went to the dollar store and bought junk for them. My son's championship game was on a Sunday while they were at camp, so we had to get him from camp, take him to the game, then return him to camp. My husband and I brought the “care packages” with us and left them with a counselor to give to the kids later. Again, you would have thought we gave them the world. A few dollar store things totally made their day.

Our back to school shopping is nearly finished. My daughter needs shoes (actual shoes, we bought her sneakers) and a couple tops, but I think we're done. My son might need a backpack; I'll have to look at his. I bought school supplies a little at a time when I was at the store. I know there are a few things I still need; certain binders, a sketch book, and a calculator. We have time, though. My kids don't start school until September 6^th. Incidentally, my daughter will be twelve when she starts high school. She isn't a teenager until September 8^th.

One Drought Is Over, One Is Ongoing

I've been feeling mostly lousy with intermittent patches of not-as-lousy.

I've been battling flares/new symptoms/fatigue/spasticity and just generally feeling icky most of the time.

I have to admit, feeling like this for so long has severely impeded my Pollyannaishness.

I did manage to get to New York City last month.

Every 2 years, my daughter goes to a dance convention to take classes from nationally known teachers, and I get to bum around NYC while she's taking classes.

Thank goodness it wasn't my first trip to NYC. Our room was extremely sub-par, especially when you consider it was a luxury-brand chain hotel. The weather was totally uncooperative for me as well; it was in the 90's every day with the warmest day being Saturday at 97°.

Still, the Universe has a funny way of taking care of things for you. My friend was supposed to go with my daughter and me, but at the last minute, she couldn't get off of work. Quite a disappointment. However, that left room for me to ask my niece to stay with us. It's convenient for my niece because she works in Manhattan. We don't get to see each other nearly as often as we'd like.

While I was bummed about my friend having to stay behind, it was nice spending time with my niece. And because the weather was so awful in NYC for me, we spent a lot of time lounging in our shabby hotel room, visiting and laughing.

My daughter had a wonderful surprise; my great niece came to stay with us as well. My daughter and great niece are very close cousins, and they don't get to see each other as often as they like. So, really, having a very low-key, hardly-leave-the-hotel weekend was good for us all.

This summer has been like last year, as far as me not being able to do anything. This year, I don't want to go out because it's been so unnaturally warm. Temperatures in the high 80's and low 90's with high humidity have kept me hiding in the air conditioning. We're actually currently experiencing a drought .  Just look to our grass for confirmation. It's been mostly brown since the end of June. I refuse to water our grass; I will water our vegetable garden, but not the grass.

Bathing in the Sun

Thanks to last week's Moving Up Day I am now the mother of a high school freshman.

I survived the ceremony, all the festivities afterward, went to a graduation party and then to a concert. Since then, I've been reading and not doing much else. When the temperature was over 90, the tuning forks overpowered my arms and legs. It took a few days for the vibrating to subside to a “normal” level, even after the temperature had eased to “normal” summer weather.

What is a “normal” level of symptoms? Darned if I know after nearly twelve years. It's probably why the page is called “Trying to Find My Normal”.

It's sort of like lead levels; while there is no true safe level of lead, there are generally accepted levels. That's kinda how I feel with my symptoms. I may never again feel how I felt before, but maybe I'll still be able to walk.

Summer vacation is upon us, and last summer I wasn't up to doing anything with my kids. Essentially anything that involved walking, outside, and especially walking outside was verboten. I was sidelined by the Copaxone. This year, I feel well enough to at least attempt some outdoor activities. Hopefully, I'll succeed!

A couple of years ago, I made a list of things to do over the summer. Last year, I didn't even look at the list. I already felt guilt and anger (at myself) because I couldn't do anything, so not looking at the list was more self-preservation than anything. This year I'm going to look at the list, and even try to do some things on the list. I feel so much better OFF of the Copaxone. Is the Tecfidera making a difference? I guess I'll find out when I get my MRI later this month. All I know is that the side effects don't sideline me, and to me, that's a victory.

OH! I almost forgot to tell you! My daughter and I decided to try making bath bombs again. We used a different recipe and different molds. The bath bombs were a HUGE and overwhelming success! 

If anyone wants the recipe we used, drop me an email, or comment.

MUD Shopping

My daughter is in 8^th grade, and Wednesday is her Moving Up Day (MUD). As of this past Friday, we hadn't even started looking for a dress. My daughter isn't a shopper; she's an order online kinda girl, like her mother. However, with time this short, we couldn't order online.

I made up my mind that we were going shopping Saturday. We wouldn't return home until we had a dress, and if we were lucky, shoes to go with it. Before we left the house, I told my daughter that I was not choosing her dress for her. It was for her MUD, not mine. I already had my MUD many many years ago. I would give her my opinion if the dress didn't fit right, or I felt it was inappropriate. Other than that, the style, the color, the print, any of it would be her choice. She was quite happy about that.

My daughter had no idea what kind of dress she wanted. Sometimes, that works to your advantage, and sometimes it's harder to find something. In our case, it worked in our favor. My daughter took about 8 dresses in the fitting room, all of them were completely different from each other. She chose one that she looks spectacular in. It's by my favorite designer; On Sale.* We both love the dress!

Our quest began at a local mall, the one I've written about before.

I usually try to park near the store we want to go in so I can minimize my walking. On Saturday, I had no such luxury because I had no idea what store(s) we'd be going to. I parked near a department store where we started the dress shopping. Lo and behold, we found the dress at the first store!! We looked at that store for shoes, but we didn't find any.

We started walking through the mall. We looked in stores along the way, and before I knew it, we were all the way at the other end! The shoe store I had in mind was there, and we found shoes!! Now, as I said, I parked by a department store at the other end, so we had to walk back to the car. I am SO proud of myself because I DID IT!

Let me tell you a little about the mall. It's about a half mile long. Yes, about a half mile long. Two floors of retail Nirvana, for those of you who like to shop. I figure I walked over a mile, by the time we went in and out of stores and walked around the stores. I figured I'd be shot for the next few days, but I don't feel too bad.

There was a concert yesterday where one of my daughter's favorite singers was performing. The other night, I agreed to take my daughter and her friend to this 6-act, 5-hour outdoor concert. Remember what I've said about thinking I'm “normal”? Talk about a delusional moment.

Yesterday morning, my husband and I were talking and Looking at the weather forecast. After hearing the projected high temperature, he volunteered to take my daughter and her friend to this concert! He didn't want me in the heat and sun all day. I wasn't hinting or anything, he just said he would do it!

I'm betting yesterday would have sent me over the edge if my husband hadn't stepped in. My daughter and her friend had an amazing time, thanks to my extraordinary husband.

I am so fortunate in so many ways.

*One of my favorite Rita Rudner jokes.

Happy Father's Day

Happy Father's Day!

Today is a day to celebrate fathers, the mostly unsung heroes of the household. Dads are usually relegated to the background, yet they don't seem to mind. I bet some dads actually prefer it.

When you start to look at commercial greeting cards for dads, the cards seem to have a few recurring themes. Napping on the couch, hoarding the remote, golfing, making bad jokes, and maybe some sort of tool. Sure, those things might be true, but Dads are so much more, at least in our house.

Quite frankly, my husband is a gift from above.

Before we had kids, my husband used to worry about being a father, and what kind of father he would be. He is an amazing father to our kids, and sometimes he was a father figure to some of my kids' friends.

He works hard to provide for us, he takes care of the outside year round including snow removal (and if you remember that we live in Buffalo, that's no small feat some winters), he takes the time to show our kids how to do things, he does any maintenance that needs to be done, and he picks up my slack when I have my bad days; he has no problem doing the dishes or vacuuming. At the first sign of heat, he's right there, putting in the air conditioners for us. He does the literal crappy jobs; he picks up the dog stuff in the yard and unclogs toilets. I honestly could go on for a long time, but you get the idea.

A couple of years ago, our front porch succumbed to dry rot, which meant that we had to replace it. Two years ago, my son was 8 and my daughter was 10. We had to demolish the crumbling concrete before we could begin to replace the wood. My husband taught our kids how to use our small jackhammer (with ear protection), showed our kids how to use the drill, and how to measure the boards. All four of us worked on replacing the porch.

His head is constantly full of concern for me, the kids, our future.

We have a tendency to poke fun at dads, but maybe that's because they are so good-natured.

Despite all the pressure my husband must feel, he does everything mostly cheerfully. Mostly cheerfully because he's not a saint. He's human. But he's our human, and I wouldn't trade him for anything.

The picture that I used today was taken on our Florida trip in 2009. It's one of my favorite photos ever because to me, it just screams “I'm a Dad”. To me, that picture is fatherhood.

Soul, Man

The 12^th of June marked six months that my mother left our earthly world. My world. My life. Technically, it's now the better part of a year that she's been gone. Some days I feel okay as if I'm finally accepting it. Some days are harder, and there are days that are really hard. The weekend had two consecutive really hard days.

Even tonight, as I'm starting the post, my eyes are welling up. Sometimes the sadness is overwhelming and suffocating.

It's usually a fun and happy weekend, the weekend of my daughter's dance recital. Her recital is always entertaining, with “wows” sprinkled in for good measure. This was her 9^th recital. Wait-that doesn't seem possible, or right. Let me go check that. Yes, that is right. She started dancing in 2007, and her first recital was in 2008. Wow. Anyway, recital weekend is always happy, festive, triumphant and fun. Sort of like Mardi Gras, without the booze and flashing. Or beads. I'm getting hung up on details to avoid writing what this post is really about.

My mom was so proud of my daughter, and in all those years, she only missed 2 recitals prior to this one. One was because she had just gotten out of the hospital, and the other was because she couldn't walk that well. Even if I let her out at the door, it was a longish walk to the auditorium once inside. Oh my, the years both my kids danced, I think we had to buy her new blouses. She was just bustin' her buttons with pride. My mom liked the show and she liked to watch all the dances.

Last year, my daughter had a duet in addition to her five other dances. My mom was determined that she was going to see my daughter dance, even if she only stayed for her duet (which thankfully was in the first act). My mom did it, too. She got to see my daughter dance, and then my husband took my mom home. I know that took a lot out of her, but my mom was adamant that she was going to be there to see my daughter.

So sitting in the auditorium, watching my daughter's class perform so beautifully, I turned into a blubbery mess. The same thing happened at competition last month. One specific song just made me sob.

Lest I give you the impression that it was some gut-wrenching, emotional, tug-at-your-heartstrings kind of song, the dance was jazz, and the song was “Soul Man”, the Blues Brothers version.

Yes, go ahead and say it...because I know. It's not the kind of song that would make anyone emotional. Normally. Believe me, I felt ridiculous. It hit me like I was catapulted into a solid wall when I was at competition. I was fine, then I was sobbing.

However, there was a reason I felt that way, I think. This is my theory. As I mentioned, my mom loved to watch my daughter dance. My mom also loved the Blues Brothers. She loved the original Blues Brothers movie, Blues Brothers 2000, and she even had 2 Blues Brothers CDs. My daughter's dance took snippets from Dan Akroyd and John Belushi's moves and incorporated them into the dance.

 I think the whole experience was just too much to process. In an older post called Music Is My TARDIS, I wrote how music can instantly transport me to a different time and place. I believe that's precisely what happened.

I was remembering happier times, walking into my mom's house, and she would have the Blues Brothers blaring from her speakers. And I'll never have that again. Ever. It's all the little things about my mom that I miss SO MUCH. Hearing her sing. Hugging her. Listening to her stories, or crack jokes.

I never told my daughter what happened because I didn't want her being distracted during competition or recital. Now that dance season is over, I can finally tell my story.

My daughter in her "Soul Man" costume.

Happy Anniversary

It's a year ago that I decided to publish my first blog entry, and lots has happened in the past year. That always happens though, doesn't it? If you actually take time to look back at any 365 days, you'll notice changes. The difference is that there's an actual record that I can look back on.

Over the past year, I learned so much from all of you.

Before I started this blog, I didn't realize how similar autoimmune diseases are, and it's nearly 12 years since my MS diagnosis. The exact symptoms vary with each disease, but there are many similarities.

I know my blog has helped people in different ways, and that's a great feeling. Knowing that I made a small positive impact is so rewarding. For some of you, the blog has been informational. For others, it's inspired you to start writing again, and there are those of you who have said that you enjoy reading my blog. I thank each and every one of you for indulging me.

While it's the one year anniversary of my blog, I don't want this post to turn into a recap of the whole last year. If you really want to look back, it's all still there. I wanted to express my gratitude, though.

My daughter came home Sunday night after being on her 8th-grade class trip. She left early Thursday morning, and it seemed like a really long time that she was gone. Maybe it's because she was in Canada over 250 miles away without a phone. The last time she went on an overnight school trip she went to Cleveland and had her phone with her. When she goes to summer camp for 9 days, she's not allowed to bring electronics, but I know she's only 30 miles away.

Anyway, the trip was to Camp Pathfinder in Algonquin Park in Ontario. It's actually an island in the park. You can read about the camp here. 

My daughter said she had a great time.

This weekend made me realize that in four short years, she will be starting college. My little pink bundle is becoming a young woman. When the time comes for her to really spread her wings and fly, I hope to be as strong as my mom was when I was considering the move to Chicago.

As much as I wanted to take the job in Chicago, I was just as apprehensive. My dad was in declining health, and my mom didn't have her driver's license. Someone even offered to pay for driving lessons for my mom so she wouldn't have to rely on anyone. I was concerned about my parents being in Buffalo alone. Oh, they had family (their brothers and sisters) and friends, but my brother, sister and I all lived (or were going to live) hundreds or thousands of miles from Buffalo.

Ultimately, it was my mother who pushed me to move. As we loaded up the last of the stuff, got in the moving truck, and drove away from my family home. I cried. I cried all the way to Ohio (about 200 miles or so).

My mother was strong, smart and wise in so many ways. She could say so much with such few words. The words that finally let me choose Chicago were, “Lou Ann, just GO. There's nothing here for you”. I knew the implied ending was “You can always come home if you really don't like it”.

Come home we did, after ten years. Coming home didn't just start a new chapter in our lives, it was more like a sequel. Spring of 2002 we moved back, fall of 2003 had our daughter, fall of 2004 bought our house and I was diagnosed with MS, spring of 2006 had our son. It seems life exploded once we moved back.

Killing Your Darlings

I made some time to sit down to write today. I wanted to work on a post for tomorrow, and it came out exceptionally long. It's nearly the length of two entries, so I figured I'd better do some editing. Except when I tried, I couldn't find any parts to cut and have the entry still make sense. Well, as much sense as any of my posts make.

Why is it that we can (almost) ruthlessly edit someone else's writing, but we can't edit our own? I suppose that while we may even be friends with the writer, the writing is still impersonal. When you write something yourself, it's your blood (ink) on the paper.

I can go back to rearrange words, change words, even reconstruct a paragraph but slashing entire sentences, or gasp, paragraphs?? The horror!!! Yet I feel I must. I don't know if you've ever noticed, but I usually keep my posts within 100 words of 500, give or take. I didn't try for that, it just seems to be where I usually end.

When I'm finished, just before I publish, I tap the little word count button, and I'm usually close to 500. Today when I tapped the little button, it read over 800. I was horrified. Well, nearly. Certainly shocked.

I'm always surprised after I've written something and it's as long as it is. And then there's that little voice inside telling me that no one is going to take the time to read all some hundred-odd words that you wrote. I'm even more amazed when more than 25 people read my blog on any given day (which has been all of them, truthfully, surprisingly). I still have that voice inside telling me that I can't do it; I'm not a good writer; no one will read my writing.

Yet, I tap tap tap away on the keyboard because even if I'm not the best writer, writing give me pleasure. It's my release. It's my recreational drug of choice. It's liberating. Even if no one was reading my blog, I'm pretty sure I'd still be writing because it's my catharsis.

I may not tell anyone in person how I'm really feeling, but I almost always post it in my blog. For example, today I'm rather like a tuning fork again, I'm really fatigued, and I'm battling a headache on top of my usual pain. But if I run into you at Target or Wegmans, I'm fine.

Oh, speaking of fine, my legs are officially the same length again, thanks to physical therapy!! I'm really glad I'm pushing through it because it's really helping, though the MS is really rearing its ugly head big time. I'm hoping that the MS symptoms will subside a bit when I stop pushing myself. But- I don't know that it will. It just might, but even if these symptoms are here to stay, my back will be stronger.

Now if you'll excuse me, I have to attempt to kill my darlings.