A conversation between me and a fellow musician at our symphony rehearsal Saturday morning:
(Me) "Good morning."
(Her) "Hello, how are you?"
"You're always great, that's why God gave you all the hard stuff, he knew you could handle it."
"It's not hard if it's what you love."
She paused for a split second and said, "True."
And so it is, to many my life appears difficult. Maybe it is. I spend my days cleaning up vomit, changing diapers, carrying a seven year old everywhere I go, tube feeding, managing seizures, etc, etc, etc. But somehow those things bring me such joy. I even cheer when Elisabeth messes her diaper. I praise her and say, "What a good girl you are to do your poopoo's! You make mama so happy!" And when I'm carrying her in my arms - as much as my muscles might ache - I whisper into her ear that I would carry her across the world if I had to. And I would.
I admit, there are times when it feels hard (we shall never forget the pool incident of 2013), but mostly, I just feel lucky. My greatest joy comes in serving Elisabeth, in knowing that I can make her life comfortable and create a constant feeling of love and safety around her. And when I focus on that, I don't see it as a hardship, but a blessing.
It's all about finding joy in the journey.
[Elisabeth Elva, a rare moment where she found the balance to sit upright. This picture really shows how severe her scoliosis has gotten - you'll notice her spine curved all the way over toward the right side of her body.]
I spend my mornings volunteering at the middle school - more specifically with the 6th and 8th grade orchestras. The music teacher there has a background in band only, so he is happy to welcome my string expertise! I feel strongly that there is a responsibility to pass knowledge on to the next generation; I was blessed to study music with some of the best violinists in the world, how could I not share all that I learned?
Today the teacher was gone, so rather than take kids to practice rooms to give them private instruction, I stepped up as the conductor for the day. 6th grade orchestra was so much fun and when we were done playing several of them told me that it was the best they have ever sounded (I agree.) The next period, the 8th graders came in...and I got a bit sidetracked...
You see, I was telling them about my children and pulled up Elsa's 1st grade picture on my phone. I began telling them about her: her past, her trials, her never ending optimism. From there I set in on a speech about the fortunate lives that they live here in America, and how lucky they should feel each and every day they come to school.
'You have so many opportunities here, all you have to do is take advantage of them and you can become anything and anyone you want. The world is yours - so whatever your dream might be, go get it.'
Before I knew it, class was over and I had spent the entire period giving them an impromptu motivational speech. Afterwords I apologized, but they were quick to tell me, 'We liked this! and 'This was awesome'!
I feel so glad that this opportunity came to me, I thoroughly enjoy
working with middle school kids. They are at an age where they are just
beginning to discover their talents, their abilities, and their
dreams. I look at them every day and hope they all realize the potential that is in them. If not, they are going to keep hearing it from me everyday until they fully understand!
Two weeks until Elsa's very first Halloween! It's the final holiday she has yet to experience here in the United States. When I tucked her into bed tonight I read her every children's book we own about trick-or-treating and carving pumpkins. I'm pretty sure Elsa thinks it's the greatest thing she's ever heard: children dressing up at night to go door to door and collect candy. Brilliant. Score another point for America.
I'm just piecing together the final parts of the girls costumes - I'm excited about them! If you have been reading this blog over the years you've probably figured out what Elsa is going to be (it's a family tradition spanning two generations). But I'll let Alexandra and Lorelai's costumes be a surprise (hint: I made Lorelai's out of the fabric pictured above).
Elisabeth is a different story, though. After giving it some thought I decided to retire her from costume wearing. You see, Elisabeth doesn't understand about things like Halloween and costumes. When the big girls were young I thought it was important to include Elisabeth for their sake, but now they are older and wiser, and have a good understanding of their special little sister. In reality, Elisabeth is happiest when she is cozy and comfortable - not being paraded around in an ill-fitted or awkward costume. So she will stay home with me, cuddled in her bean bag, listening to trick-or-treaters at the door. But never fear, I do have something festive planned for her - a new tradition we shall say. ;)
On the agenda this weekend:
~ Visit to the pumpkin patch.
~ Family from out of town is coming to stay for a few days.
~ Final three performances of Annie.
~ Gymnastics meet.
~ Nutcracker rehearsal.
~ Baby shower for a friend.
~ Lorelai's 10th birthday!
Whew! Think I'll survive all that?
(Throw a trip to Costco in the midst of all that, too!)
So, have you ever noticed that Elisabeth always wears bibs? That is partly due to drool - but mostly it is because she vomits all day long. And by all day long I mean all day long. My daily life revolves around changing her bibs, clothing, and bedding. It's not so bad at home, but it is really difficult to deal with out in public. For example, a few days ago I needed to run into the gymnastics office and pay Lorelai's tuition. I decided that it was too much trouble to get Elisabeth's wheelchair out, so I opted to carry her. As I stood there at the counter I held her with my left arm and was busy paying with my right. That's when it happened. Vomit. Green vomit (all that spinach) all over her and me - and dripping down onto the floor. The lady behind me seemed a bit uncomfortable, I think part of her wanted to help, but she didn't know how - and probably wasn't sure about green vomit. I asked the woman behind the counter for some paper towels and I wiped us up the best I could (have you ever tried cleaning up vomit while standing up holding a seven year old?) Basically, I'm trying to draw you a picture of my everyday life for the past 7 years. It's been....messy.
Back in 2010, when her g-tube was placed, she had a fundoplication done. This is a procedure where they use the stomach to create a wrap around the esophagus. This wrap is supposed to prevent anything from going up - even burps. Unfortunately, Elisabeth's never worked. It is suspected it was torn apart immediately due to a seizure. A year later I asked about redoing it, but the surgeon felt it pointless due to her uncontrolled epilepsy. Her seizures now, however, are quite reduced from what they were then. I estimate that she has on average five a day - way better than hourly! So they have agreed to redo the fundoplication!
[Illustration of a fundoplication.]
In addition to the fundo, they will do a second procedure called a pyloroplasty. This is a surgery where the lower part of the stomach is cut to widen the opening into the intestines. Elisabeth had a gastric emptying study done last week that showed it takes her stomach twice as long to empty as it should. So even if the wrap around the esophagus comes undone again due to a seizure, the vomiting might not be as bad because her food won't be sitting in her stomach as long.
Surgery has been set for November 12th in Spokane and they expect her to stay around five days. I hate that she has to go through another surgery, but I know how much better this will make life for her and me. Seven years of vomiting is way too much!
[Elisabeth, during the Upper GI. See her stomach on the monitor back there?]
At long last Elisabeth is getting her new wheelchair!
Yesterday, she and I traveled to Spokane for a fitting. They sat her in a mock seat that formed to the shape of her body, and from that mold they will make a custom chair fit for a queen! This is long overdue seeing as her crooked and hunched back doesn't sit comfortably into the flat-backed wheelchair she currently has.
Of course, the most important detail was choosing the color for the frame. There were 20 some-odd choices, so we put it to a vote. Each able bodied member of the family (sorry Elisabeth) cast votes for their top three, those top three were assigned point values, and from there the winner was made clear....
Glow is a sort of sparkly white - perfect to represent Elisabeth's angelic nature.
Last night I opened my email and was about to delete what appeared to be junk mail from Zillow when the subject line caught my eye:
Just listed for sale: 9065 E Lupine Ave...
That was my childhood home in Scottsdale. We moved there when the home was brand new in 1985 and left for California in 1988. How in the world did Zillow link it to me??
Naturally, I was tempted to look through all 25 pictures of the inside. I almost wish I hadn't. Those few years of childhood are the ones I treasure the most. They contain the happiest memories, almost all of which take place in that home. And the mental image of that home had remained the same in my head until last night when I got a tour of the 'new improved' version (blah!).
I was telling Donald about it and showing him the pictures: where we'd hang our stockings, the double closets in me and my sisters bedroom, the backyard pool where I learned to swim.
"This reminds me of a Miranda Lambert song, The House That Built Me," he said,
then went to YouTube to play it for me:
If you want an inside peek at the house that built me - a look at that pool and those double closets,click here.
We ran two shows for over 2000 school children in the region today, but Annie officially opens tomorrow night! The cast, crew and orchestra have worked extremely hard - trust me, I know. Alexandra and I have been there every night rehearsing until past 10:00. But it's all worth it to see a truly amazing show come together.
I am taking a break from the orchestra pit for opening night so I can watch Alexandra perform, but I'll be down there for the remaining five shows. Come over during intermission and say hello, okay?
Here is a snapshot I took from the pit during It's a Hard Knock Life:
And don't worry, Alexandra (front and center) will be looking more unkempt for the actual show - that hair is way too neat and tidy!
There is a little boy in Elisabeth's class who is an absolute gentleman. As she arrived at school a few days ago he immediately rolled his wheelchair over, reached for her hand, and brought it to his lips for a kiss.
I'm so very grateful that Elisabeth has a good school, loving nurses, enthusiastic teachers, sweet friends - and a handsome admirer.