On parenting

I love being a Mom.  Actually, I love, love, LOVE it.  It's the most wonderful and hardest job I've ever had.  Among my goals as a Mom is to raise girls that have good self-esteem, are curious about the world around them, and leave the world a better place than they found it. 

Lots of times I don't really know if I'm doing this Mom job right or not, so my approach to motherhood is that I just go with my gut on hard situations and decisions.  I find my gut has never let me down even if it tells me to do something I think is a bit curious.

This week Julia had her school book fair.  She has become a voracious reader the past 18 months and I've been borrowing most of the books from the library.  However, there are certain books she likes to read over and over again and she wants her very own copy for her bookshelf so it's there whenever she wants to read it.  I completely understand this since I love little more than having my nose planted in a good book.  We talked about her class visit to the book fair and decided she would take some money from her piggy bank and buy her books.  This isn't because we didn't want to buy her books, it's more because we are teaching her about the value of money.  We put the money in an envelope and sealed it up.  There were several bills and a lot of change. 

Judy Blume is her current favorite author.  I loved Judy Blume as a child and find it enjoyable to revisit her books.  As expected, Julia came home from school the day of the book fair full of energy and talking a mile a minute.  She showed me the Judy Blume books she purchased and told me she also bought a book for Emma.  A book for Emma!  That she purchased with her own money. She made sure to tell me and Emma that it wasn't a Christmas present because she already bought and wrapped that at the school holiday fair.  No, this was just a book she wanted to buy Emma because she thought she would like it.  And Emma grinned from ear to ear when she showed it to her.  It's an early reader book and is about a girl that rides a horse and Julia just knew she had to get it for Emma.  She didn't bat an eyelash about spending her own money she took from her own piggy bank on the book.  For her sister.  Instead of buying the two books by Judy Blume that she wanted.

There was a bit of a wrinkle, though.  Julia was a few cents short for the two books mostly because she decided to bring coins instead of a bill for the last dollar and didn't bring quite enough coins to add up to a dollar.  So she put the books on hold and asked Chris at the end of the day if he could go with her to purchase the books and lend her the extra 10 cents or whatever it was and of course he did.  While there he decided he wanted to buy her a book and so she was able to get the second Judy Blume book.  It's not unusual for Chris to buy a book for the girls at the book fair but I don't think Julia thought of that because she was genuinely thrilled about it. 

My heart feels full in these moments.  The moments when I realize my little girl cares so very much about her sister that she decided on her own to buy her a book from the book fair just because she thought she would like it.  When she wasn't selfishly thinking of how many books she could get only for her and how she realized in the moment how much fuller life is if we share.  It's moments like these when I say a prayer of thanks to God for bringing my two special little girls into my life.  And it's these little moments that make me feel like Chris and I are doing a pretty decent job at this parenting gig. 

Fall Overview

Today is the first day of Fall.  It's my very favorite season.  I just love the chill in the air, the cozy feeling of a sweater in the morning, the availability of pumpkin spiced coffee, the changing leaves.  I don't enjoy the shorter days or the hectic schedule that comes with the back to school scene. 

This year both girls are in full-time school.  Julia started third grade and she is getting so very mature.  She is turning into a bookworm and devouring books at an astonishing rate.  It makes my heart sing to catch her cuddled up on the couch with a book in her hand or have her beg to stay up a few more minutes so she can read just a little bit more.  She still has a silly side and is allowing that to come out in public more often.  It's nice that she is letting the world see a bit more of her captivating personality instead of saving it for home.  This year she continues her Irish dancing and is adding in violin lessons at school.  Seeing her leave two mornings a week with her backpack and her violin makes me smile - it's a seriously cute site!

Emma is in first grade at our local elementary school.  She has a great team helping her succeed in a mainstream setting.  Some days are going great, some days she isn't interested in participating.  That is our Emma.  With the exception of her speech therapist her entire team is new.  Emma takes a LONG time to adjust to new people.  I'm praying that she starts to settle in soon and show them what she knows.

I continue to focus on getting myself in the best shape of my life and that means I've been running and taking classes at my gym more often than not.  With the girls back in school it leaves me some free time each day to get in a workout.  I'm even strongly considering doing a triathalon with Emma in May.  That gives me more than enough time to prepare.  Emma loves joining me in my workout sessions.  She is a great little motivator when it would be easier to cut a workout short.  I also have a neighbor who joins me for the evening and weekend workouts.  I love having a partner to workout with as it pushes us both to go a bit further or faster or workout on a day we would rather skip.  

We purchased a new bike trailer for Emma and she loves it!  I'll do a review on it soon, but for those who are wondering it is the Chariot Cougar I and a link for it is here:  http://www.rei.com/product/867690/thule-chariot-cougar-1-stroller-with-strolling-kit. The verdict is still out on how long it will be before she outgrows it, but it is working for now.  I'm planning on doing a 20 mile bike ride to fund raise for Cystic Fibrosis in a few weeks and was hoping to trail her behind me but the lawyers associated with the even aren't keen on that idea.  Luckily, the triathalon I'm training for is all ability friendly.  For more information on it, check the details out here:  http://gotthenerve.org/race-information/

With the girls back in school and *mostly* settled in, I've decided to look for a part-time job with flexible hours so I can still be available to drive Emma to appointments and therapy sessions and consult at school as necessary.  I found a few positions that really interested me but I might not have interested them enough.  I am confident that when the time is right a job will come along.  We are also still navigating the real estate market.  We put our house up for sale a few months ago when our tenants moved out but so far we haven't had any offers.  We will likely put it up for rent again if we don't get any offers soon. 

And I'll leave you with a photo I snapped last week after Emma's horse lesson.  This was at the end of the half hour session.  She did the best riding I have ever seen last week and after a full day of first grade at that!  My girl never ceases to amaze me.

Warp Speed

Where to start???  Maybe I should update the header to reflect the scorching temperatures we are seeing now rather than the blizzards we had in the winter?  Not tonight...

This spring flew by at warp speed.  Here are some highlights:

Julia made her First Holy Communion and we had a gathering of friends and family at our house afterwards to celebrate the big day.

Julia's softball season and Emma's baseball season ended on high notes.  Both girls loved playing with their team and enjoyed all the action associated with it.  They also enjoyed the snack bar at the field, as did nearly all the other children that attended games from what I could see!

Julia completed 2nd grade and is now officially a 3rd grader.  That time sure is going by fast!  So fast, in fact, that I didn't get an individual last day of school photo - gasp :-)  I did manage to capture a last day of school with one of her best buddies while they were all smiles.  Her buddy is moving to a different school next year and the day turned to tears since they will miss each other.  We assured the girls that we will continue to plan play dates and have had a couple including a sleepover already.  

Julia started making her "special desserts" after dinners.  One night she made strawberry shortcakes and it quickly turned into some fun with our food.  I love silly second - oops, third! - graders!

Emma graduated from Kindergarten.  She will start 1st grade at our {more} local school in a mainstream classroom and will have her language arts and math classes with the children in the learning specialist classrooms.  It covers the same curriculum as the classroom but goes at a slower pace which will allow more time for Emma to hear and process the information through her CIs and then respond at her slower pace due to her slower motor control.  We are praying that her 1:1 aide will be hired by the district to work with Emma again, but that is very much a prayer at this point in time.  Emma did a tour of the school and met the learning specialist teacher and told us that she is "excited" about her new school.  Emma is doing well with telling us her feelings on her talker - and that has me excited!

We found out that the tenants that were renting our old house bought a new one.  We decided to list the house for sale again in the hope that are hoping for a quick and uneventful road to a sale and settlement.  So far, it's not as quick as we hoped but we are still optimistic.

I ran a 5K!  Chris loves running and has been asking me for a couple of years to start running so he could cheer me on at the finish line.  This year I have been focusing on my physical health and decided to go ahead and put aside my hate of running and surprise him by running a 5K race as a Father's Day present.  I used the Ease into 5K program that is an app for my iPhone and only told him about it a week before the race.  He didn't believe me at first and was really excited when he realized it wasn't a joke.  After running for about a month I joined up with my neighbor and we try and run together since we run at a similar pace.  We entered and ran the race together and probably had the biggest cheering section as our families came out to cheer us on!  The girls joined in the fun by participating in the children's race that went off before the 5K.  It's was a lot of fun and I'll probably enter another race in the Fall when the weather is a bit cooler.

We had the opportunity to go to a Phillies game with our support group from the hospital.  We were able to spend some time on the field and meet a few players and talk with our host, Ryne Sandberg and his wife Margaret.  They were so nice and easy to talk to and it was an amazing opportunity and fun night out!  The Phillies won in extra innings - 5 extra innings to be exact.  Needless to say we didn't stay for the entire game but were happy to hear we won when we checked in the morning.

We have also been busy checking out a couple new exhibits at the local science museum, attending summer parties, a fundraising event for a local charity, a family wedding and a couple wedding showers, along with spending long nights outside listening to the neighborhood children play and giggle and ask if they can stay out just a little bit longer.

Yes, our life is full.  No wonder I haven't sat down and updated this blog!  We are hoping you are having a similarly fun summer!

Shopping

I have two girls.  One hates to shop while the other loves to shop.  She considers it a great opportunity to people watch and soak up all the attention people throw her way.  Can you guess which one is my shopper?

Hoping we can get a new ride in 2014 so we can transport her power wheelchair around and she can learn to navigate her way around in public.  Until then, her adventures will stay with the manual wheeled variety :-)

Snow day and Eco2 internet access

Today was a snow day.  Horray!  Except that snow days are a lot of work for parents.  Maybe a bit more work for parents of special little ones like Emma.

We did have a lot of fun today, though.  The kids played outside for a while - lots longer than it took me to get them all bundled up in their snow gear.  That's progress I tell you!  Chris built Emma a seat out of the snow and she did well in it before she started sliding out and I started to worry she would be cold.  Once that happened I decided to bring out the KidWalk and get Emma upright in the snow.  She loved it and moved her little legs all around and we helped her move since her braces don't fit in her snow boots.  When it was time to come in the children piled into the house for some hot cocoa, playing and eventually watched a Christmas movie while I baked a few Christmas cookies and Chris set about making dinner.  It was the perfect way to spend the afternoon.

I was able to get some more adorable snow photos today.  I even took a few family photos and one was selected for our Christmas card.  I ordered the cards but it seems they might take until Dec. 24th to arrive so they could be {un}fashionably late this year.  Hey, at least I pulled it together to order the cards and that's more than I thought might happen this year.

Since Emma was home with her talker we configured it to play some online games.  She received money for her birthday so we purchased the computer portion of the talker (insurance requires it to ship without the computer activated if they purchase it so there is a fee if we want to be able to use it as a computer to connect to the internet) and I was anxious to figure out how to get it working.  I'm part of an online Facebook group of parents whose children use Minspeak - the language of Emma's Eco2 talker - and they gave me lots of tips on how to get it to work and we eventually got it up and running.  Emma was able to play a game on Helpkidzlearn.com before bed and she seemed to really like it.  I also downloaded and installed the trial version of Look to Learn for her to try based on another Mom's suggestion.  I gave it a shot and it worked well and I'm excited to introduce it to Emma this week.  We have the option to activate the WiFi part of the computer for another fee but we wanted to make sure we could get the computer part to work before we spent that money so for now we are using it wired.  I forgot how unportable and annoying it is to not be able to move around with an electronic device!  I think we might consider WiFi during the holiday and use the remainder of her birthday money to active it if Emma enjoys playing with the internet.  I expect she might like the games and watching some YouTube videos and interacting with those using her eyegaze should help her get more accurate with eyegaze access for her communication.  I expect Emma will make a lot of progress with her device for communication in 2014 but it will take a lot of work from her and us to get there.  Please pray for her communication if you are so inclined.

Unexpected Blessings

"Having a baby changes everything" says a baby commercial and there is so much truth in that statement.

When we first found out that Emma would have some differences the news pretty much rocked our world.  It put us in a spot that was uncomfortable and very much unwelcome.  Our future was unknown.  The only thing we knew was the life we knew and expected would change forever.  For the first year each specialist appointment brought us new information and more and more differences were discovered.  It was a gut wrenching year and some days it felt so lonely.  It was then that I learned about blogs and chat groups and I started to reach out to others.

I remember early on people would share their stories with us.  People with children that have differences - from down syndrome to a mild hearing loss and everything in between.  We didn't know anyone with a child with cerebral palsy until probably a few years into this journey.  But the people we did know seemed to pass along a common message of hope and blessing.  At the time I really thought they were crazy.  How could all these differences be a blessing?  How could having a child that would struggle for even the most minor physical achievement be a blessing?  I didn't understand.  I was angry.  So very, very angry.  At God.  At our circumstance.  With the news that each doctor appointment brought.  With the intrusion from all the therapy appointments that seemed to dictate our daily schedule.  With the stories from people about how X, Y, Z, Q, R, S kids had early intervention and it worked and they were caught up by school years.  I knew that wouldn't be the case for my girl and hearing these stories did not help at all.

Little peanut getting stretched

The early years were hard.  And while each day I fell more and more in love with both my children, I did not see Emma's differences as a blessing.  Nope not even one little bit.  I was angry that my child that I loved more than life itself would have to struggle through her life.  I was angry that Julia wouldn't have the typical sister bond with Emma.  I was angry when we met families with children that had a terminal diagnosis because they shouldn't have to go through the loss of a child.

And after a long time with the anger I finally had to let it go.  I had to move on.  Each day I was seeing this beautiful life unfold before me and there was no time or energy left for anger.  

Walking around the playground

And somehow, sometime in the last six years something changed in me.  I started seeing Emma's differences as a blessing.  I feel blessed to be so lucky to have both my children with all their unique characteristics.  I started to wish everyone had an Emma in their life and I thought of all the people in the world that will never know how totally amazing it is to live our life.  And I mean that - our life is better than anything I could have dreamed.  It might be harder and more physically exhausting (and seriously, I could do without all the health insurance issues!) than I imagined but it is so full of LIFE.  It is so fully of HAPPY.  It is full of friends old and new.  It is a much fuller life than I think we ever would have experienced had Emma not taken us on this journey.

Little girls playing peek-a-boo at the children's museum

I see people looking at us everywhere we go.  Yes, it might have something to do with the fact that we pimp out Emma's wheelchair for all occasions at her insistence - this girl loves attention - but it doesn't always.  Sometimes it's people staring and pitying us and our life.  To them I say, we are not to be pitied.  We are having the time of our life - come and join us!

It's all about the boas, baby!

Endless summer fun

It's unheard of that we would get a 3 week stretch of temperatures in the the 80s in August but it is happening!  So, while we have it we're taking full advantage by hitting a lot of fun outdoor events.  It feels strange to be able to do so many outdoor activities in August.  Emma doesn't tolerate the heat too well so we usually wind up finding indoor fun options in July and August.

We continued our field trip fun week with a tour of the Herr's potato chip factory.  This place is actually farther away from my house than I expected.  And we hit more construction delays and traffic than I expected.  So I wasn't surprised when we showed up at 10:10 for our 9:50 appointment and didn't see any of our friends there.

When we went to the registration desk after much discussion and flipping through papers I found out that my girlfriend had, indeed, changed the tour from Tues. to Wed. due to the crazy rain we had but I somehow missed the message that our tour time was changed as well.  I thought we were too late to enjoy the tour when, in fact, we were about 1.5 hours too early!  What to do, what to do?  I haven't really ever had this problem before as we tend to run on the late side of things.  The factory is in the middle of what appears to me to be nowhere although I'm sure the people that live there would be able to set me straight.  I was banking on that when I asked the girl behind the counter if there is anything to do while we wait.  The one girl was clearly too young so she just laughed at me - I immediately disliked her.  The other girl - God bless her - suggested we check out a park down the road and off we went with a stash of potato chips bought at the factory store.  We found the park easily and were really excited to see that it was actually a HUGE, fantastic park and a great place to visit in and of itself let alone as a time-killer before an appointment.  The girls played and snacked and I snapped a few photos before we headed back for the tour that included a short video, a walk through the pretzel and potato chip operation, and snacks.  We even were able to try hot potato chips right off the production line, which was big hit with all the children.

The park would have been better with our jogging stroller instead of the wheelchair.

I sure would have loved exploring the trails a bit more, but the wheels weren't suitable for it.  Emma didn't mind!

A few of the crew that toured.  The rest headed to the great park before heading home so I missed snapping a complete group photo.

We ended our field trip fun week with a trip to a local garden estate for some Friday fun.  We became members in June and are hoping that the wide paths will be a great place for Emma to practice driving her power wheelchair.  We are ever hopeful even though we are still in appeals on the denial.  Still, it's a great place to explore and since lots of our friends have memberships it's a good meet-up destination.

We have 2 more full weeks of summer vacation.  I wonder what we'll do next???  We have a few more fun adventures planned so stay tuned...

Local summer adventures

This summer we had a list of things we wanted to do.  There is still about 3 weeks left to our summer and we are working on completing most of them.  I posted closer to the beginning of summer that showed we started it off with a bang and have done some dribs and drabs posts since then.

Now that our summer camps are over, we reclaimed the month of August for family fun!  Horray - that's my favorite kind of fun!  I seriously can't get enough of hanging out with my little ones and I feel like they are growing so quickly.

Last week we went to the science museum.  I am a scientist by training and I really miss playing with things in the lab.  Hanging out there made me realize just how much I miss it and I wonder if there is a chance I might be able to find some part-time work that is only during the school year (lots of us stay at home Mom's dream about this perfect schedule) that includes getting my hands dirty in a science lab.  Doubtful, but I'll look into it.  I might just have to rely on our yearly membership to the museum to fulfill my science side :-)

GLOW was the special exhibit geared to hands on exploration.  There was a section with costumes and you could dress up as fireflies and jellyfish.  We decided to forgo the costumes and stand in the firefly capture jar to check out the view - this made the girls all giggly!

Butterfly room is always a favorite stop for me.  Julia finds it a bit warm but was up for it and Emma is happy to check it out as long as there are other people in the room she can watch.

Digging for dinosaur bones

Fossil Prep lab had a learning session.  They told us about a dinosaur they are currently working on that was found in MT.  How did we never see the fossil prep lab before on all our visits?

Panning for shark teeth.  Cut out for a wheelchair is quite nice, but it falls short in being truly accessible unless you have super long arms.  

Starring in their own dinosaur movie.  

This week we took advantage of the *slightly* cooler weather to visit a park we'd never been to before.  I had won tickets to the carousel and mini-golf at the silent auction fundraiser at Julia's school so Chris met us there the other day after work for some Monday evening fun.  It was a fun place to visit.

The park had the oldest remaining original fountain in the city was up and running, a small-ish playground with an accessible swing and monkey bars, a snack shack, a carousel and mini-golf.  The park is in the historic district so everything was USA themed.  The carousel even had a bald eagle instead of a horse in one slot and that is what Emma rode.  Julia rode a dolphin, although I'm not exactly sure how that made it's way onto the national themed carousel?  The mini-golf had obstacles made out of local historic landmarks and I just loved it!  I have a feeling we'll be back.

When did you get SOOOO BIG???!!!!  Emma is staring right though me to the campers running all over the place!

Sisters swinging next to each other.  Melts my heart they can swing next to each other and it's not something we take for granted!  Emma is also much stronger this summer because she was never able to sit in these swings before without added attachments.  Both girls are nosy as ever and watching the campers again!

Such a cutie pie!  This girl melts my heart.   

Is that a hole in one?????

Emma was interested in mini-golf for about 3 holes.  She reached out for the club and even helped swing and hit the ball.  Surprisingly, she did quite well!  Then she decided she had enough and wanted to people watch everyone on the course that did NOT include anyone in her family.  Her stroller was thus positioned for optimal non-family people watching and she was smiles the rest of the night.  Silly girl!

Girls Rule!

Boys....need we say more??!!!

Wildlife in the city.

We have about 3 weeks before the start of school.  The fun will continue.  How blessed and lucky our family is!!!!

Quiet

At this moment my house is relatively quiet.  I'm listening to one of my favorite CDs while the dishwasher runs in the background.  The doors and windows are open but not much of a breeze is coming through since we are in the middle of a heat wave.  The window unit air conditioner is off and the girls are off having lots of fun at camp.  I have 3.5 hours all alone today.  It's quiet.  This is my first bit of alone time since Julia's school let out 5 1/2 weeks ago and we were busy doing so many fun things during those weeks.  Oh, the fun of summer!!!!!!

So, I have a bit of time on my hands to spend as I please.  I've used a bit of that time to send out thank you notes, a letter to a young man we don't know but who has CP and is in the hospital for a lengthy stay and wants some cards to hang up, send a couple belated Birthday cards, made a few phone calls, cooked taco meat.  It's amazing how quickly I completed it all.  I still have a long list of things I would like to do.  Clean the bathrooms, run to the grocery store for the tortillas for tonight's taco dinner, pay bills, tend the garden, write, etc.  The to do list is never ending and I find comfort in that.  No matter how much or little I accomplish there will still be more on the list so I don't need to rush to complete most of them.  I guess getting tortilla has to be done before dinner but other than that it can all wait.......because I've decided to set aside the list and head to the gym.

The gym.  It's good for my body and good for my soul.  I never used to enjoy going to the gym at all.  Lately, though, I'm finding that I look forward to my workouts.  I have aches and pains where there weren't any a few years ago.  Carrying around an almost 5 year old is very different than carrying around an infant and I need to keep up a workout routine to avoid injury and keep my muscles in shape.  My body always feels better after a workout - less aches and pains and my mind is clear.  It's been too long since I've worked out during the day since only one of the girls looks forward to going in the gym's child minding play center.  I can't enjoy working out knowing one of my children is crying and unhappy in another section of the building.  So we opt for exercising together instead and go on bike rides, walks, swimming and have lots of fun.

But since I have a bit of time to myself now I'm heading to the gym.  The to-do list can wait.  Remember that if you come over and notice the house looks very lived in :-)

SUMMER Fun!!

This summer we've been doing so many fun things that it leaves little time for me to document it.  This fact really just makes me smile!  After all, isn't life all about participating in it ;-)  Here are some photos from our adventures.  Enjoy!

• Mommy/Julia date day to pick strawberries.  

 I just adore her!

• Daddy/Daughter fishing fun

Julia LOVED fishing!

Emma was more interested in the people watching than the fishing or the fish

Chris had a bit of fun by chasing Julia with the fish he caught!  I LOVE this photo!

• The girls had some fun on a recent rainy day

Playing some computer games

Emma figured out how to move the screen door open and closed.  It took my breath away!  Love how she is using her arms a bit more even if it is to try and bust out of the house into the rain :-)

• Swimming.  I'd say lots of swimming while the girls would say there is never enough swimming!  My girls take to the water like fish.

Julia's underwater handstand is getting really good!

• Sleep-overs followed by sidewalk chalk art

Note:  Emma was in the wagon while I took photos.  When not taking pictures I held her in a sitting position on the blanket so she could join in the fun.

• Boardwalk and beach adventures, where Julia proudly helped Emma on some rides even though her arm was sometimes crushed and hurt proving yet again that she is the BEST BIG SISTER EVER!!!!!