New Journal

Hello, Friends! 

So the new journal is officially up and running.  We made the decision to keep this one private or "friends only."  I vacillated between public and private because I know that means not everybody who follows us here will follow us to the next journal, but we thought it was the best choice in the end.  I've sent friend adds to every LiveJournal user that I knew from this journal, as well as an email to all the friends and family whose address I had that I thought might be interested in the new journal.  It's easy and free to get a LiveJournal username, then if you leave a comment on the new journal, I can add you. 

I probably won't be updating this journal very often, which is bittersweet.  This journal was a refuge, a bridge to new and old friends, and an incredibly therapeutic process for the past three years.  I first joined LiveJournal just so I could get a username for a community, but I'll forever be grateful for that one desperate night in my living room when I decided to use this journal as it was meant to be used.  Thank you again for keeping me company on this journey. :)


Until The Next

Before we left Seattle, I remember having lunch with my then boss and co-workers and we got on the subject of children and parenting. At this time, parenting was a far-off plan for Al and me, not a reality. I remember saying something like, “I think being a mother means sacrificing everything for your children.” In my mind, a good mom was one who put every need of her children before her own. I remember my boss quickly disagreeing, saying her mother did that and it made her a little crazy. Rather, the most important thing was balance. I kind of just disregarded that idea, knowing the idealized Super Mom I wanted to be in the future.

I’ve thought about that conversation many times over this last year. 2010 proved to be one of the most transformative years in my life thus far. It started in January, when I accidentally cut my hair off. I’ve had really long hair most of my life and in January my friend suggested we do a Locks of Love donation. Since they only need 15 inches, I figured I’d get an exaggerated “trim” while doing a good cause, knowing my hair would still be in the middle of my back. Unfortunately, the stylist didn’t know what she was doing, and I left with hair above my shoulders for the first time since I was 10. I was devastated, feeling like part of my identity ended up on that salon floor. Plus, I knew Al would hate it, which he did. This was kind of a symbolic moment, the first shedding of the old skin.

Soon after, at the end of January, I started running. No need to go too far into that one because I did an entire entry on it, but taking up running was a major turning point in my life as a mom. It was the first time since having my children that I devoted time to myself. Taking up something that I really had to dedicate myself to, then following through, was kind of like an epiphany for me. It felt so good to accomplish something I thought I never could, and I am now running FOUR MILES at a time, which is still surreal. I was always that girl lagging behind during the Presidential Fitness Test in elementary school when we had to run a timed mile, and I’d usually have to walk the last lap. I think about that girl on my runs sometimes…

Then in July, I started working again. Money was really getting tight and somehow the stars aligned. During one of Alice’s doctor visits, I was telling her pediatrician that we were finally at a place where I could start looking for work since we had a good aide in place. She asked what kind of work I did, and less than a month later, I was a working girl again! I work during urgent care on evenings and weekends, and I now work between 10-15 hours a week. The schedule couldn’t be better, the work is fun and the people are great. I missed that feeling of doing a job well, feeling like I’m helping people, and adult conversation! Of course, working means less “free” time (whatever that is…) but we’re making it work and I am so grateful.

On top of all of this, I took two vacations this year—just me! In June I went on a girl’s weekend to Las Vegas—the first time I was alone with my sister and girl friends in more than five years. That weekend was all fun, but my other solo trip was truly life changing. In March I went to San Diego to attend the CSUN Assistive Technology conference, and spend time with my very best friends from high school. On this trip, I was fortunate enough to meet Eva from The Deal with Disability and her mom Deena. We spent the afternoon together and in those few short hours, along with many emails back and forth, my heart and mind finally accepted the very real fact that things will be okay. Life won’t be easy, but I will survive, Alice will thrive, and our family will grow stronger. In fact, meeting Deena made me realize that not only will I survive, but I will be sane and still laugh and enjoy life for years to come. Both she and Eva helped me really believe that things don’t have to go downhill from the diagnosis. Looking back to that moment in the neurologist’s office, it was hard to see any direction but down. For a couple years, that’s precisely the direction that our life spiraled.

I can’t attribute the shift to any one of these things, but I can say with all certainty that I’m never going back to that dark place. I remember a well-meaning friend telling me once before Alice was about to start school for the first time that I needed to get my life back. I realize now that being a good mom is most definitely not about sacrificing her own life for those of her family. It may seem like the ultimate sign of devotion and love, but in the end, my boss was right. It’s about finding that balance between providing an environment of love and support, never losing the connection with your partner, and always, ALWAYS being true to yourself. My own life and personal journey cannot come to a halt because I’m a mother. I want my children to enrich my life, not dominate it until I completely lose sight of who I am. I am so happy and proud to say that not only have I gotten my life back… I found myself again!

So, dear friends, this is goodbye. Well, not goodbye, but see you later... on a different site! The truth is, I don’t feel like the same person who started this journal more than three years ago. And rather than transition this journal to something else, I want to preserve it. I want anyone who happens to stumble across this journal to see it for everything that it is: the sadness, the heartache, the tiny miracles that followed, as well as the support from friends and perfect strangers that pulled me along during one of the most difficult times of my life. See, I’m not “Waiting for the Miracle” anymore. I’m grateful to say that I can recognize the miracles that were always there, and the ones that happen every day. The miracle is discovering that your partner is everything they vowed they would be, and more. It’s the people who come into your life at just the right time to help you see things from a different angle and make you believe that you’re not in it alone. The miracle is accepting that life isn’t easy for any of us, and that we can all bounce back from life’s tragedies. What doesn’t kill us makes us stronger, even if we don’t realize it until years down the road.

I want to extend a heartfelt thank you to everyone who ever read this journal and found something useful in it. Thank you to everyone who supported us and gave me virtual hugs when I needed it most. I’ll post a link to the new Family Journal when it’s up, with pictures!! … The girls are growing like weeds, no, that’s not right...like beautiful roses in full bloom in spring. Believe me when I say, I’m one of the luckiest moms on the planet.


*tap, tap, tap* ...Is This Thing On?

May 5th?  My last entry was really May 5th?  That's more than a month and a half ago!  I wish we had the technology to send emails and write journal entries directly from our brains, while we're doing dishes and other mundane tasks, because that is usually when I'm sifting through all of my thoughts and thinking about people I haven't talked to in a while.  When I do have the time to write, I am either too pooped to crank up the computer or now, running because it's a cool 90+ with 60%+ humidity during the day.  I love to run at night, watching the fireflies dance with the moon high above me.  But by the time I am done and showered, I am ready for bed! 

I couldn't let another day go by without posting something!  Isabelle is down for her nap and Alice's favorite precocious pig "Olivia" is on, so this seemed like a good time to at least say hello :-)  I've got at least four entries that need to be written, but for the moment, let me say we're all doing great and life is really good.  Alice's first year of school finished a couple weeks ago, which is odd because I swear just yesterday we were meeting her teachers and therapists for the first time.  She came home with some really sweet goodbye messages on her button, which I am going to try to capture right now using the LJ voice post function.  Let's hope it works!

Scenes From School

These are stills from a video that another teacher at Alice's school took (she also did the cute layout).  She used the video in a presentation she gave about augmentative communication devices in the school setting.  I absolutely died over the "Friends" one because it so captures what I've been gushing about as far as how kind and loving Alice's peers are.  These are kids from Alice's class and one of the other Pre-K classes. 

Definitely click on these to enlarge!


Run For Your Life

If I had a dollar for every time somebody told me that I needed to take time for myself, we would be a lot further out of debt!  In the battlefields of newborn Isabelle and toddler Alice, my doctor wrote me a prescription for 1-2 hours a day of time I devoted only to me, if even just to sleep.  The therapist I saw back in 2007 challenged me to take 15 minutes a day to sit by myself, doing absolutely nothing, for a week straight. She was flabbergasted—almost annoyed—that I couldn’t do it.  There was always something that needed to be done, and sitting in my room in the silence was not a relaxing, therapeutic way to take my mind off it.  Everyone warned me that if I didn’t do something for myself, I would crack.  I shrugged it all off,  almost laughing at the absurdity of the concept of “Me Time.”

I reached a point over the winter where the end of my rope was so frayed that I didn’t even have a snapping point anymore.  My days were exhausting, not in any way glamorous and had become very cyclical.  Some days I didn’t want to get out of bed, not because I was tired but because I could not face the idea of yet another day of the same thing.  My job is my family and this house, and at the end of the work day I am… in this house… with my family.  I had nothing that was my own, not one thing that I did just for me that brought any measure of fulfillment.  Al would give me time on the weekends for shopping or quiet time, but it wasn’t doing it.  I was short with everyone and overall, really unhappy.  I bottomed out sometime in January, telling Al point blank that I didn’t know if I could do this anymore. 

I am grateful for a lot about Al, but mostly it is his even temper in a crisis situation.  He didn’t freak out, list the many stresses in his own life, or point out the very obvious reality that quitting was not an option.  He made me feel like it would all be okay, and together we came up with a way for me to regain some shred of my sanity back.  He was quick to say that he would sacrifice whatever was necessary of his free time so I could really get out and do something for me.  I don’t know if it’s too early to say that we changed my life on that night, but I can say that I feel better than I have in a long time. 

My friend Joan introduced me to The Couch to 5k running plan and her progress really inspired me.  When she first started last summer, she was running only 60 seconds at a time.  Less than a year later, she ran her first half marathon in April (that’s 13.1 miles, folks!).  The program is designed to help new runners slowly build up their endurance to eventually run 5k, and beyond.  I completed the program two weeks ago and ran my first 5k today.  I was one of the last ones to cross the finish line, but I didn’t stop to walk and I FINISHED! 

If you’d told me three months ago that running would make me feel better, I’d ask you how putting my body through that kind of torture could bring me anything but physical pain.  I’m shocked at how this one thing has brought such global improvement in my life.  I’m not doing this to lose weight or even to get healthy.  When I bought my running shoes, the person helping me asked if I had my first race picked out.  I told him I just wanted to see if I could do it, to see if I had the discipline to get out there and push myself to keep going.  More than once through the first 9 weeks I was certain I wouldn’t finish a run, but I always did.  If I had to, I would slow down to a pace probably slower than my normal walk but I never stopped putting one foot in front of the other.  During those moments, I would keep telling myself, “Don’t quit.  Keep moving.  Just don’t stop.” 

It is not only the exercise factor of running that has made a positive impact on me.  Running presented a serious challenge for me because I was fairly certain that I couldn’t do it.  Every time I finished a run, I felt a huge sense of accomplishment and personal pride, and I always looked forward to the next run, just to see if I could keep going.  Looking back over the past three years, I believe that I started to weigh my own personal success on Alice’s progress.  Because of all of the effort I was putting in, if Alice wasn’t progressing as I thought she should, I would feel like a failure.  I realize now how truly warped that line of thinking is, and I am grateful that I can stand back and see that.  I am also grateful that I found something to make me feel proud of myself again… and I do!


Joan and I after the race.

catching sunshine

Let The Good Times Roll!

I have a couple of introspective entries that are taking me a long time to finish, but I cannot put off talking about Alice’s awesomeness any longer!  (By the way, did you know that “awesomeness” is an actual word meaning “so impressive or overwhelming as to inspire a strong feeling of admiration or fear”?  It always sounded like a made-up surfer word to me, but it’s not and it completely conveys the current state of Miss Thang!)


The last couple of months have been AMAZING around here.  I feel like there has been a complete shift in our family’s equilibrium for the better.  I briefly mentioned that Alice got a CAP slot in December, and that has made a tremendous difference for us on multiple levels.  CAP is our state’s assistance program for children over three and adults with developmental disabilities, and every person in the program automatically gets Medicaid.  We’ve been applying to Medicaid since 2007 and have always been denied; I don’t think I have to say that this is a HUGE financial relief for us!  Along with Medicaid, Alice gets an amount every year that we can use to hire an aide.  We posted an ad on Craigslist for a graduate student interested in pediatric therapies or early childhood development and found the sweetest girl who is an SLP GRAD STUDENT!  Talk about the stars aligning!  Her name is Tammy and Alice is already completely in love with her. 


Yesterday when Tammy was here, she and Alice had some one-on-one time doing art projects while Isabelle napped and I tackled the bear of attempting to organize and clean out five years of accumulation in our bedroom closet.  Once Isabelle woke up, we all took a trip to the grocery store.  This excursion might seem pedestrian, but it’s something that Alice rarely gets to do.  We brought her button and programmed it to say “Hello, my name is Alice!”  As we were cruising up and down the aisles, she would whack it and more than once, another shopper would turn around and engage her.  One mom with two young girls saw her in the produce section and asked her, “What does that button do?” and once Alice hit it she said, “Well, hello Alice!  How are you?  Aren’t you sweet!”  We saw them as we were checking out and the mom said, “Bye, Alice!” which made Alice so excited she would have bucked right out of her chair if she wasn’t strapped in.  The store florist also heard Alice’s message and asked her to come to the floral counter for a balloon.  It was a wonderful experience!


I can’t talk about Alice’s awesomeness without talking about school.  Almost every day she comes home with exciting tales from her day on her button that we talk about.  One day recently, she and another boy from a different class spent their time on the playground throwing rocks down a drain.  Teacher Lisa said they would put a rock on the top of Alice’s hand then Alice would tilt it over the grating and they’d listen to it clink-clank down the drain.  That filled my heart because that’s the kind of stuff I used to do on the playground!  Alice also likes playing in the sandbox with her friends and dancing at circle time.  OH!  MAJOR NEWS:  Alice has gone pee pee on the potty TWICE at school!  She continues to grow and thrive with all of her friends, and I’m still waiting for someone to pinch me.  Wait, don’t pinch me, if this is a dream I don’t want to wake up :-)


(no subject)

Journal, journal, journal, I have so much to tell you!  First, though, here are a few pictures I pulled off my phone:

Squishing the Amish Friendship Bread starter from Joan. 

Showing off the pink bunny ring that was on top of the cupcake Lindsey brought her for feeding therapy.   I can't get over how grown up my little girl is! 

Drawing at school, sporting a princess crown because, as Teacher Lisa said, "who doesn't draw with a princess crown?"


Alice is going to be FOUR in less than THREE months, which means little Isabelle will be TWO!  How did that happen??  My little girls, growing up so fast...