Summer Recap: Beach!

Summer recap time! We had a great time at the beach again this year. The biggest difference was my mobility; my knee is (not all the way) better, and I can carry and move in the sand and surf (a little).

Elena is taller now, and better able to navigate sand and surf. We rented a beach on the water, which means that Elena can get to and from the beach on her own (if we are off the beach, she needs a ride in a car or wagon).

Elena and Vivian loved "wave jumping", where they launch themselves over/into oncoming shallow waves. Elena did this by herself this year! She typically launches herself off her strong leg (left)--which can make for a very tiring, sore leg after a lot of waves.

Preparing for wave launch

We built sandcastles (the "figure 8 castle didn't quite turn out), hunted for shells (lots of shell crafting this year!), playing in the waves and catching little fish in the surf. Vivian was very interested in catching her own fish (with a little net, as opposed to the cast net the grown-ups were using) and she was hugely successful! Elena even caught a few little fish with the net and one crutch! Elena was almost entirely independent while moving in/on the sand this year (some falls, but no bad ones as there really weren't many shells on the beach).

Wave rider

Beach cuties

Figure 8

Fish pond

Viv is REALLY excited she caught a fish!

The other big event was we decided to go deep-sea fishing (half day trip). I went when I was a little girl with my brother and father, and it was...memorable. We didn't have the best time--big boat, my brother and father we seasick, I didn't catch anything and was really whiny about it. My mother stayed on shore with my very young sister.

This year, we tried something different: a chartered boat. Mom and my sister wanted to go, and then our immediate family. We were all excited about all the fish we were going to catch. Jason kept talking about how great it was going to be...I kept telling him to replace "great" with "memorable". The weather looked good.

The morning of our arrival the weather turned. The captain told us it was still average swells, but he lied; we had to move from our intended fishing spot b/c the sea was too rough, and settled on a different location where the average swell was 8 feet high. 

As a precaution, my sister and mother and I took dramamine. I thought about giving some to the kids, but remembered my last trip I wasn't seasick, and hoped that kids were less susceptible. WRONG. 

Viv was sick on the way out; she is a very well behaved sick person, so she managed to keep it together. Elena was next, once we stopped and the boat started rocking. Jason was next. The Dramamine Ladies kept it together; barely. I felt terrible, my sister didn't feel so great but was catching a lot of fish, and mom just clutched the side of the boat and prayed that we would go home soon. 

We fished for less than half an hour. It was that bad. BUT, we got this gem of a picture (thanks Jason!) which makes me crack up every time I see it. 

Deep Sea Fishing: Memorable edition

Amberjack dinner!

Once we recovered from our fishing expedition, we had a few more days on the beach. Elena moved pretty well, using her old pair of crutches (rusted shut, so I put some PVC pipe extensions on the bottom). We made sure to do lots of stretching and resting after being in the sun/surf all day.

Beach combing

Mermaid! With shell tiara!

Family

 It was so nice to be at the beach with family. We miss all of you!

Pre-Summer Recap, Part I

We've had a lot going on here.  Kids are busy; the biggest difference is my difficulty with my knee, which is painful and time/energy consuming. I just looked back at the blog, and my goodness there's a lot missing! I'll try to put it back in order.

A New Arrival

The girls finally got to meet their new baby cousin!  Vivian has never met a baby this young. Elena loves babies, and couldn't get enough of G.

Viv attempting to hold G

E holding G

Fun Run

Every year there is a fun run for our school. It is very hilly, and typically on a hot day. This year it was sweltering hot. Elena and Vivian both wanted to run--Viv did the 50 and 100 yard dash, and Elena ran the half mile.

Run Vivian!

The half mile/mile course is no joke. I had a rough time getting around the 'flat' parts, given my injured knee. I knew Elena could handle the terrain, but I wasn't sure she could finish the course given the heat and crouch issues. She wanted to run, and so it was. She started with her classmates--she was left behind in all of 10 seconds. Jason was with her, in case she got too tired or fell in a ditch (she didn't).

Most kids finished the course by the time she was 1/4 through. Vivian and I kept cheering. As she passed the other parents hanging out by the course, they started cheering too.

And then something happened. I couldn't really see it, b/c it was out of my range-but the kids who had finished (and their siblings and friends and parents) started to congregate near the finish. I finally walked to the finish line and saw all these people, mostly Elena's schoolmates, walking with her, cheering her on, clapping the whole way to the end. It was beautiful.

Strong Finish!

Strawberry Season!

We went picking this year-Elena did a great job with one crutch. We even had enough to make jam!

Sisters at the Orchard

A Fine Specimen

Vivian

Later on the kids hosed off in the sprinkler. A great way to usher in the season!

Sprinkler Time

A New Appreciation for Walking

Last month I hurt myself playing soccer.

It was the one injury I was worried about, the one I was trying to avoid at all costs (I was trying to make it until my birthday--playing has hurt more lately, and I had been considering retirement).

I blew out my left knee.  Shredded ACL, sprained MCL, torn quadricep, three meniscus tears, giant cartilage tear, multiple bone bruises.  It was pretty terrible.

I had surgery four days after my injury to reconstruct my knee.  I had my ACL replaced, one meniscus tear repaired (two others shaved down) and the cartilage flap removed and my bone punctured in order to created pseudocartilage. Rehabilitation has been slow and painful.  I use crutches to walk (Elena's next size up loft strands, actually) and had great difficulty getting around the house and taking care of myself.  I have therapy twice a week, and do exercises around the clock.

It's been a real eye-opener.  The difficulty in dressing, bathing, carrying, and general instability has made me more sympathetic--and proud--of Elena and how she has struggled and coped with her disability. We've had some great talks about this, and she has seen me stretch, do home PT, and cry from pain and frustration. She is more helpful around the house and does more for herself. She is also quite proud of the fact that she is currently faster than me. I'm trying to be a model of safe choices (using crutches around the house to avoid falls), standing tall and straight, and diligently doing my PT exercises. Elena definitely is picking up on this.

The worst of my pain is from the bony procedures (ACL attachment and cartilage removal/"repair"). I've broken bones before, but not on a joint--it's bad. I am so super thankful we didn't go through with the osteotomy procedure we were considering earlier this year...I understand sometimes there isn't a choice, but I can now imagine how badly that hurts. I have had serious pain management issues, and will remember to address this for Elena's future procedures.

I expect to return to full (or near full) mobility in four to six months. Elena is keeping close watch on my efforts and attitude, so I am doing my best to be a good example. Jason is being SuperDad, taking over nearly all house and kid duties.  I'm very thankful to family and friends for such a great support system.

One Week Off

Elena went to sleep away camp this week at Camp Holiday Trails.  It's a pretty big deal for our family.

I pick her up tomorrow.  I hope she had a good time.  But this post isn't about that.

I'm sure all parents that send a child away to camp, or to school, or to a friend/family's house for a stretch of time miss them.  They feel the void that remains.  I know I do.

What is worse, though, is that the void is compounded by ease.  It's so much easier to go anywhere--do anything--with just Vivian.  I feel incredibly guilty about it.

In the last two weeks (Elena had school, and then went to camp) I taught Vivian how to ride a bike without training wheels.  I taught her how to swim.  She now folds towels and shirts and laundry without asking.  She helps make lunch and helps clean up.  She called a friend to play.  We stayed up late and caught lightning bugs outside.

It warms my heart and makes me numb at the same time.  This small list of things will take Elena a long time to accomplish.  How does that make her feel?  I can't hold back Vivian for her (and never planned to).  In general, Elena is very encouraging.  But it has to sting.

Vivian and I have had a great time, and I can tell she misses Elena too because she has stuck so closely to me.  Viv broke down a few nights ago, wailing uncontrollably because she missed her sister.  She put it beautifully when she sobbed "my head feels like my heart is in two pieces".

Me too.  

Spring Break 2014--ROAD TRIP!

Since I didn't have to be working seven days a week, and the kids were out of school, Jason took a week off and we decided to take a road trip for Spring Break Vacation.  We drove up to see his parents, otherwise known as Nana and Pop Pop, in New Hampshire.  We decided to break the trip up in pieces instead of drive all night, like we did when Elena was a baby.  We figured that the kids wouldn't sleep, and I worried about how tight Elena would be if she had to sit for long periods of time.  We stopped every 2.5 hours (or sooner) and tried to work in exercise along the way.

We started our trip with a slight detour--Jason was speaking at James Madison University.  So, we drove to Harrisonburg and dropped him off.  The girls and I had a few hours to kill, so we went to Luray Caverns!

The Cavern tour is approximately 1.25 miles of walking--down dark and windy paths (paved), and some impressive hills.  There are some steps and in many cases, a guardrail.  Still, the terrain was challenging (the hilly parts, mainly) but Elena was never worried about losing her balance and falling.  I was, but she proved me wrong.  She kept up with the group quite well, and walked the whole tour.  There was a chair lift (like the type you get in homes to go up/down stairs) and Elena rode that up and down to tour.  It saved her 70+ steps, which was a good idea.  

Kids loved it

I have a lot of pictures, but I only showed a few here.  Their favorite parts were the Wishing Well (not shown) and the Pipe Organ, an instrument that uses the resonance of the rock formations to play a song!

Awe-inspiring

After Harrisonburg, we made the long trek to New Jersey where we stayed the night in a hotel room.  Before we arrived in NJ, we dined at a little restaurant called Rhubarb House in Hagerstown, Maryland.  (Jason loves the aggregate review Yelp!.  I never thought much of it until this trip--now I LOVE IT.  We don't like to stop at chain restaurants if we can help it, so we turned to Yelp! to find well reviewed restaurants/attractions along the way.)  It was rainy and nasty outside, and when we arrived the door was locked--they weren't open yet.  But they let us in anyway, and we had a fabulous time talking with the owners and had a delicious meal.  It was fabulous.  

After dinner we headed to our New Jersey hotel. The next morning we saw good friends in Poughkeepsie at Vassar College.  Our kids had a great playdate, and breakfast was fantastic!  We got back in the car and drove until lunch.  We ate at The Starving Artist Cafe in Lee, Massachusetts.  A beautiful little creperie, where every crepe can serve two people.  There was a great little folk music couple playing and the girls sang and danced, and even got a little lesson with a rhythm clapper. 

Live Music

Elena tried the Dancing Man!

Then we arrived in New Hampshire.  The weather had just turned nice--the week prior it was all snow, ice, cold and slush.  It was warm(ish) and the snow was melting.  The kids couldn't wait to see their grandparents.  We had an easy dinner, and relaxed for the night.  

The next day we headed off to a mall to get some exercise--mostly to ensure that Elena didn't get too stiff.  It was still cold and rainy, so we headed off to a mall and did a lot of walking.  

Orange Julius after exercising

We stopped at the neighborhood where Jason grew up, and visited his friends' parents who still live on the street.  They even had a playroom with toys that the girls could enjoy!

We had dinner with some of Jason's friends in town.  They have a daughter one year older than Elena, and we had a great meal with great company.

The next morning we headed to Jason's alma mater, the University of New Hampshire. We talked to some of Jason's business friends while walking around the campus, at least 2 miles.  The weather was beautiful and Elena kept up beautifully.

UNH Wildcats!

We took a small detour after UNH to the Hampton Beach.  We kept the destination a surprise--when Vivian saw the ocean, she was so excited she wanted to go in the water.  She whined she didn't have a bathing suit, so I told her if she wanted to go in, that was fine, but she couldn't wear her clothes in the water.  She stripped off her shoes, socks, and pants right there (while another family was playing in the sand with their winter coats on, mind you) and ran to the surf.

Vivian insists the water isn't too cold

Vivian still insists she is not cold (SHE IS!)

 After getting reclothed, we went down the beach a ways and found a cute playground.  Lots of stares with Elena's crutches.  No big deal, though.  Then back to Nana and Pop Pop's house for the evening.

Beach Playground

The next day we drove into Boston, to the Science Museum.  We took the subway ("The T") into the city, which the girls loved.  We had to walk about a half mile from the T to the museum.  E looked great.

Fog Tornado!

Plasma Tube!

 The big highlight was the Lightning Show.  There was a HUGE Van De Graaff generator as well as some impressive Tesla Coils.  We all enjoyed the loud and sparkly show!

Lightning Show was awesome!

Vivian's favorite exhibit was the one about space.  She thought the Gemini Capsule was her own personal refuge.

Gemini Bunk

Vivian LOVED her "spaceship"

We all walked about 5 miles to/around/from Boston.  Elena looked a little wobbly near the end, but overall she looked fantastic.  When we did stretches that night, she was looser than ever.  She was not sore the next day when we went to the Maple Barn (the end of syrup season) for breakfast.

Parker's Maple Barn

Sugar House--where they make syrup!

We had a great meal, and since we had to leave before tour time, they gave us a private little tour of the Sugar Shack and how syrup is made.  

That was our last stop in New Hampshire.  We broke up the trip on the way home with a stop at a unique resort in Connecticut.  It was a pretty fancy place.  The girls were on their best behavior and had wonderful manners at dinner.  The staff were on a first-name basis with the kids before we left!

Beautiful girl on a beautiful day at a beautiful place

Girls loved the Game Room

Our room for the night.  It was super cool!

We left later than we had expected that day...we were hoping to make one more stop in Hoboken but had to bag it b/c the drive home was going to be a long, rainy slog.  We took breaks every 2 hours or so for potty breaks or just to get up and stretch/walk.  We made it to my parent's house (Grandma and Grandpa's) around 7 pm for a late dinner.  We ended up staying the night with Uncle Andy and Aunt Melissa, which was fantastic b/c I was too tired and the kids were too cranky to make the short 2 hour drive home.

We finally made it home mid afternoon Saturday.  Our home sweet home.  Our cats were happy to see us (big thanks to the neighbors who helped take care of things while we were gone!) and we are getting back into the swing of things.

I admit, I was very very nervous about the idea of a long road trip--Elena tends to get super tight from prolonged sitting, so much that her movement is impaired for the next two days or so.  Or, she has problems with dehydration during the trip and gets constipated.  This time?  NOTHING.  She moved beautifully, never felt sick, slept well, met a lot of new people, and had fun. Vivian had to be carried a few times b/c she was out of gas--but Elena did not.  This opens up a whole new possibilities for adventures for our family.  It was a wonderfully different sort of Spring Break.  Now we have to figure out where our next road trip will be!

Big thanks to The B family, Luray Caverns staff, Rhubarb House, The Cliftons, The Starving Artist Cafe, Aaron at UNH, Kevin and Pat, The Trembleys, The Winvian, Nana and Pop Pop, Grandma and Grandpa, and Andy and Melissa for making our trip such a positive experience!

Christmas, in a nutshell

Preparing, celebrating, and cleaning up from our Christmas celebration has taken most of my time and energy lately.  So, here is the nutshell version.

First of all, preparing for Christmas was extra-special because I had more time to do it.  Despite a decade of trying, I finally got the outside of the house lit this year.

Wood Pile reindeer

Night Lights

We made three (!) kinds of Christmas cookies.  I even helped volunteer at Elena's school to help her class make ginger snaps!

Viv and I helped E's class at school

We all went to a free (!) Christmas concert by the Municipal Band.  It was great!  The kids even knew some of the songs and sang along.  The girls went to a work holiday party and got to see Santa!  Jason and I went to our friends the H's holiday party--with only grown-ups and it was fabulous!  Vivian had her preschool Christmas pageant.  They even played handbells to Joy To The World.  Viv was fantastic!

It was dark inside.  You get the idea, Viv was excited!

There was plenty of seasonal music around the house, and lots of watching our video of The Nutcracker (Baryshnikov/Kirkland version).  As a surprise, I took the girls to the theater to see it live!

On our way to the Warner

After the show--girls in the city!

We had both sets of grandparents come to our house.  It was wonderful to spend time with family!  The girls enjoyed their gifts and their company.  Elena has been working hard on her Christmas piece, and she played "Jingle Bells" on the piano for everyone!





We actually had cards ordered (Elena did the artwork!)--but they arrived later than expected.  The good news is the company waived the charge, the bad news is they will be sent late.  I figured I'll consider it a win if we get them out before February.

I know this post is up late--there is a lot more to write about, but I don't want to get any further behind than right now.  Merry Christmas, Happy Holidays, Happy Solstice, Seasons Greetings to everyone!

Stay-at-Home-Momhood

Well, it's officially been over a week since I left work.

I'm not sure why, but I hesitate to call myself a stay-at-home mom.  But I am (now).  I do miss the idea of having a job out of the home--but I don't miss work. AT ALL.

I miss the facade of having it all--a job I love, and my well-taken-care-of family at home.  In reality, I didn't have either.  I just didn't realize it.

It's amazing what you'll tolerate, a little at a time.  That's how it was at work.  And at home, I'm crushing it.  Cooking, cleaning, being active with the kids, getting their homework done, little fun things, you name it.  Both Elena and Vivian tell me several times daily how glad they are that I am home.  If that's not validation enough, I have a bathroom that hasn't shined for a year (don't judge me) that is now spotless and my favorite room in the house.  The house TLC is coming along slowly, three hours at a time (while both kids are in school) and it's going great.

You don't have to tell me that stay-at-home-moms work.  Any parent already knows this, working or not.  In my case, I found out the hard way that my home life suffers plenty when my work life is (was) overloaded.  So far...my sabbatical is a huge win.  Physically--no more constipation issues, I sleep much better, and my contacts don't bother me any more (no I'm not making this up).  Mentally, I still juggle a lot--but it's things I WANT to do, which is relatively new. Emotionally, I feel better about being there for the kids.  Elena and Vivian have been hugely appreciative--something I would never have expected from kids so young.  Vivian has playmates coming to the house, which is completely new.  Elena is planning playdates after school.  Everyone is going to bed better than before.

Life is good.  I'll have to put up pictures of our recent adventures--roller skating, cooking, making the basement a playroom, art projects...eventually.  Now, it's time to rest.

Flower Girls

Yesterday, my brother got married! Elena and Vivian were asked to be flower girls--they were SO EXCITED! A few months ago Andy and Melissa brought down their flower girl dresses--Vivian has asked almost every day if she could wear it to school. They could not wait for the wedding!

I had a few concerns. If you have a child with CP like Elena, you know what I mean. Will I find appropriate shoes that will stay on? Will she be able to carry a flower basket? Will she fall? What is the terrain like (is there a fabric runner, or is it on grass)? Will she need to stand for a long while? My most immediate issue was what will I do with her crutches? As you can see, they are hot pink. Not traditional wedding appropriate.

I brainstormed for a long time in my head. I settled on using ribbon. I figured it wouldn't fray, and I'd twist it around or make a "tube" with it and hand sew it. I settled on wired wide white ribbon, just to see if it would take shape. It did, sort of. But it was thin, so the hot pink still showed through. I ended up using double-sided hem tape--LOTS of it. First I'd tape the crutches, then I twisted the first layer of ribbon around them. I put on more tape, and wrapped another layer. The crutches sort of looked mummified. I then sewed double-ply fabric flower trim around the crutch joints (where the ribbon wouldn't take), wrecking a whole lot of needles in the process because they ended up being coated with the layers of hem tape underneath. Still, overall, I was pleased with the look--with the exception of the dirty arm cuffs, but I forgot all about planning for that.  Now all I needed was for her to keep these white crutches CLEAN for two days (day of the rehearsal and the wedding).  WHICH SHE DIDN'T, b/c she got them all dirty at recess--she left them on the ground and kids (including her) walked on them while catching cicadas.  A little laundry detergent and water saved the day (WHEW).

you get the idea

As for shoes, I wanted a thick-soled white mary jane flat that had LOTS of buckles and/or straps to try to keep the shoe over her sure step AFOs.  That didn't really exist, so I settled on a very low heel (since she was on her toes anyway, her gait didn't look too bad) and one strong (but thin) strap.  There wasn't much to choose from.  I considered trying to get her orthotist to alter the heel of her shoes (since she has a leg length discrepancy, and we do this for her regular shoes) but I didn't have time.  Elena's foot came out of her shoe a few times, but after we strapped it REALLY tight (it didn't hurt her foot b/c of her AFO) it seemed to be set.  

The terrain was outside (gulp).  The procession was down an old, uneven, sometimes crumbling brick walkway (double gulp).  It was relatively flat, but problematic for Elena if she wasn't paying attention.  She knew she was supposed to smile and look forward as much as possible, while staying safe--she knew the walkway could be trouble.  

Neither Elena nor Vivian carried a flower basket (we had been practicing carrying a basket on her crutch and using the hand to throw things out of it).  Melissa decided the girls would wear flower crowns on their heads instead of throwing petals--I was actually quite happy about that, given the brick walkway.  

Everything seemed in order.  The rehearsal went well, but it was hot--SUPER HOT AND HUMID.  E seemed comfortable with the flower girl duties, but not the heat.  Then it rained.  Then it got cold.  

REALLY COLD.  It was 60 degrees and WINDY--compared to they day before, it was downright frigid.  After breakfast that morning, we took the girls to Gravelly Point--a great place to get close to airplanes as they take off from the airport.  It was pretty cool.

Fast and loud

Three airplanes

Then we all got ready for the ceremony--major excitement on Elena's part.  Vivian was tired (I knew this might happen), so we packed a few snacks just in case.

Me and my girls

Dressed up beauties

I decided we'd take off the girls' sweaters (not part of the flower girl uniform) and they'd have to be cold for a few minutes.  They ended up putting on their sweaters during the ceremony.  No biggie.  

Waiting patiently--this room was warm

The photographers requested no cameras at the ceremony--which makes sense, no one wants their wedding pictures to have photos of all their guests taking pictures with their phones!  So I don't have shots of the actual ceremony.  If I get any digital copies, I'll put them up here.  Elena was AWESOME.  Super great smile, walked slowly, didn't fall, and walked nice and tall.  Just perfect!  Vivian walked a little fast--but she was totally adorable, especially when she wanted to stand with the bridesmaids (she did, until she got too cold and she put on her sweater).  Needless to say, the ceremony was beautiful, and I couldn't be happier for my brother and Melissa.  They are a perfect match.  

Heading to the reception!

 
At the reception, my camera ran out of battery life.   The girls (especially Vivian) worked the room and talked to family and friends.  They both loved the photo booth and seeing everyone all dressed up!  I was hoping that they would last until the dancing started.  I got one dance with Elena--she was extremely tired and I held her.  Vivian was already asleep upstairs at that point.  A few moments after our dance, Elena went up to join her.  It was a very special day--but by that point, both girls were pretty exhausted.  Jason put them to bed while I got to catch up with family and friends, which was great fun.

Congratulations Andy and Melissa!  Thank you so much for allowing us to be a part of your big day!