Sunday, March 31, 2013

Happy Easter

Happy Easter!  
Today we celebrated with a visit to church, some time together at home and dinner with our families.
It was a day that we celebrated our blessings.
We wish everyone a blessed Easter season!

After mass we posted for a family photo
Emma was tired most of today.  She cried when we put her in her crawler for the egg hung and, instead, opted to watch Julia hunt for the eggs from her comfy position on the couch.  All the while laughing - stinker!  Julia shared the eggs with Emma without being asked.  I love the bond between these two sisters!
She informed me that I can only take 1 photo of her then finally gave in to a few more. 
This child loves to have her photo taken!  She let me take as many as I wanted without a limit.  

A special shout out to Aunt Jane - it was wonderful visiting with you!!!!!

Monday, March 18, 2013


We sent a balloon up to Finnegan for St Patrick's Day
There are days - so many days - that being a stay at home Mom (SAHM) is like be stuck in a continuous do loop. Wake up, get children up and ready, feed children, clean up messes, tend to dishes, feed children, clean up messes, play with children, feed children, clean up messes, feed children, etc.  There is a LOT of feeding of children going on in the day.  And in our case there is also a lot of in and out of various equipment for Emma.  There is very little sitting around and truth be told I love when both girls are home with me - it just makes me happy even if I am so very busy!  I keep wondering whatever I will do once they are both in school all day.  I guess I'll go out and get an easier job that will pay me ;-)

Anyway, being a SAHM can be a thankless job.  No pay, long hours.  It's harder than any job I've ever had that I received a paycheck for and that makes me wonder why there isn't a tax break to stay at home and tend to our little ones.  Is there one I don't know about?  If no, why not?  And some Mom out there make it look so darn easy but the simple truth is I'm not one of them.  Goodness me this is a hard job.

But it's also AMAZING.  

Little giggles makes my heart sing.  

Watching my child sit independently for the first time - even if it was only for a second - feels like I've won the lottery.  

Eavesdropping when they "play school or house" tells me what they are experiencing and just how happy their lives are.   

Hanging the multitudes of artwork the girls produce on the fridge, their bedroom doors and their cork boards brings smiles to my face.  

Random kisses and hugs make my day.

Coming up with new activities that get them excited gets me excited to come up with more!

I feel so fortunate that I have this opportunity to stay at home and tend to their little spirits and I know with every fiber of my being that they are having a very happy childhood and that realization always makes me feel so good.

But certain parts of the day are just HARD.  Take bedtime.  There were lots of tears and pounding of the feet and the "I hate you" screams that sometimes made me laugh but mostly left me feeling exhausted.  So this year we started a new rule - No TV shows or movies on school nights.  And it was pretty much the single best rule we've put in place.  There are rarely any outbursts or temper tantrums.  There is a lot of extra quality time spent together reading, playing games, doing puzzles or arts & crafts, writing in journals, playing with friends, and moving about for Emma.  This helps Emma get to sleep better because she is more tired and it helps Julia go to bed easier since there is a more natural transition to bed that doesn't coincide with when a tv program is over.  

As for me, well, the result is that I've had a few days where I've felt a bit like SuperMom and I've found that while it's a new feeling for me it's a welcome one!  It always happens the same way and it happened today.  After we picked Julia up at her bus stop we came home and the girls settled into an activity in the kitchen.  Julia was writing out thank you notes at the table, eating a snack and telling me and Emma about her day.  Emma was in her KidWalk.  I had plastic eggs out in a basket for her to play in and she played for a bit before tossing the basket on the floor and heading to her favorite spot - the computer desk.  She loves to bang about on the keyboard and play switch games online and is always much happier with everyone in the same room.  I had some good music playing in the background and was cooking a bit of dinner at the stove without feeling frazzled.  Life seemed just about perfect.

And in that time when all the little moments came together I felt like SuperMom.  And it felt darn good!

Sunday, March 17, 2013

Bits and pieces

It's almost Spring.  With the clocks turned ahead one hour it feels nice to have a bit of evening family time together when it's not dark even if it means the girls are going to bed a bit later than the ideal time.  Spring break is just around the corner and we are already coming up with a list of fun things to do together since the girls' breaks overlap a week.  Last year there was only a day overlap which meant I had one of them home with me every day for 4 weeks, and this year it will be for 3 weeks.

The weather this weekend is a bit unseasonal.  Yesterday we had sleet and snow making it a great day to duck into a coffee shop during a stroll in the city.  It was the perfect little coffee shop and I instantly fell in love and thought the girls would so like a trip to it.  Then I remembered the 8 steps up a steep flight of stairs to enter the cozy (i.e., tiny) space and decided it's not a great spot after all.  Sigh....there are so many great places in the city that are just not set up for wheelchairs.

Next week is Palm Sunday already.  It is strange having Easter so early in the year.  It feels like lent just started and already we are making our Easter plans.  Chris asked me today if I was going to plan another Easter egg hunt.  The kids are at the perfect age for them and we had a hunt with friends the last couple of years that were so much fun.  I think I better start looking for all our plastic eggs and filling them up.

I've been working on my photography lately and am branching out to taking more photos outside of my children ;-)  It's been a lot of fun and I'm happy I have a creative outlet to balance out my mostly scheduled days.

Tuesday, March 12, 2013

Right Now

A family photo at the Harlem Globetrotters show.  I'm making an effort to have myself in more photos.

  • I'm thankful for allergy medicine that helped kick my migraine to the curb!
  • I'm excited about a text message sent from Emma's aide that said she used her talker a few times at circle time today to talk with her friends.  That's BIG stuff!
  • I love Julia's giggle.  It's so cute!  And I love the way she is so excited about things and giggles even harder when I start to laugh.  She is so adorable!  I feel like a bit of magic enters my day when I get a chance to play with her and see her imagination in action.  
  • I feel blessed to have such a great husband and partner.  He is seriously the best!  I don't tell him enough.  Hey, babe - You are the Cheese to my Macaroni.  Love ya!
  • I miss my Finnegan.  Lots.  And it seems like every place I go I seem to wind up in the pet area, which is not a place I want to be.  My heart still hurts.  And I'm mad when I think about how we lost her so young.  The chances of losing her to the lyme necrosis is so rare.  So is the chance of having a baby with complication of cCMV.  If we keep winning the "rare" card, I sure wish God would make it us winning the lottery and stop messing with my family!  
  • I'm glad I've been working out at the gym consistently each week.  I'm feeling stronger and am looking forward to the nicer weather so I can take Emma out for bike rides - something we both enjoy.
  • I'm thinking about Emma's kindergarten placement.  We are in the early discussions of places.  
  • I feel behind in that I haven't made an appointment to have our taxes done yet.  I've been dragging my feet because I think we'll owe money this year.  I plan to call tomorrow for an appointment to get that monkey off my back.
  • I'm looking forward to a Composition in the Field class with a professional photographer this weekend.  It was a Christmas present from Chris and I think it's going to be lots of fun!  Fingers crossed for good weather.  

Monday, March 11, 2013

Cerebral Palsy Awareness

Here are some things you might not know about Cerebral Palsy:

  • Cerebral means "relating to the brain" and Palsy means " muscle weakness"
  • Cerebral palsy is a brain injury.  It is not contagious and it is not progressive - i.e., the injury is what it is and won't get worse over time.
  • Cerebral palsy can span the spectrum of slight weakness in one hand to being unable to voluntarily move most of your body.
  • Cerebral palsy is usually the result of an injury before or at birth.
How Cerebral Palsy effects our everyday life:

  • CP is expensive.  It requires lots of therapy and specialized equipment.  Couple that with the fact that it's very hard to have both of us working full-time and still ensure Emma is getting all the support she needs makes us get "creative" in our finances.
  • Having CP requires countless hours on the phone with insurance companies to get therapies and specialized equipment paid for.  This is a thankless job.  And it seems never ending.  It can be exhausting and insurance companies seem to want to make the process exhausting so you will give up and pay for the items out of pocket but I'm not a quitter!  I am, however, thankful for a speakerphone so I can do other things while on a perpetual hold loop.
  • We think about places before we visit.  
    • For friends and family:  Does so and so's house have a lot of steps to get in?  Is it big enough to bring in Emma's chair or should we plan something else for her while there?  Would it be better to meet out somewhere rather than at a house?  
    • For pubic places:  Is there a wheelchair entrance?  An elevator?  Will it be too crowded to roll through the people?  We pre-plan our excursions when we are going to unfamiliar places.  
    • We also have memberships to easily accessible places like museums and zoos and use them often.  Seriously, I know of few 7 and 5 year olds that have been to the local museums and zoo so many times that they ask do they have to go there again????!!!!  Mine do.  One day they will appreciate all the culture they are soaking in at such a young age.
  • It gets easier and harder over time.  Easier because we are better at knowing what we need and ask for it.  We also have friendships with others that are living a similar life and that is priceless.  Harder because Emma is getting bigger every day and that makes it a bit harder physically.  
  • Making adjustments to everything are just part of our everyday.  It takes time, but it's so worth it. 
  • Some people say "I just don't know how you do it."  That gets old.  I hate that.  I usually hear "thank goodness it's not me who has to do it."  I would rather people say "I love that you are doing x, y,z.  Can you tell me how I can help with it?"  Usually the only people who say this are others who are living a life similar to ours.  
  • I have to ask for help quite often.  I hate asking for help.  I'm getting better at it, though.  But, if I don't ask and you see me struggling....please offer some help.  It will make my day!
Stay tuned for more CP Awareness through the month of March.

Friday, March 8, 2013


Yesterday I gave Emma a kiss and she gave me one back.  I caught it in a photo because I needed to cheer her up and she loves getting her photo taken.  I think it's one of my favorite sets of photos of me and Emma.  

I pulled out the PhotoBooth on the computer because Emma was cranky and nothing changes her mood quicker than looking at herself.  She is such a little ham for the camera!  Here is a brief video I shot of a cranky Emma about 15 minutes before Chris came home from work.  Emma was anxiously awaiting Chris' arrival home....just watch.

Thursday, March 7, 2013

March is Cerebral Palsy Awareness Month

March is is a busy month for our family.  It's Cerebral Palsy Awareness Month, Spread the Word to End the Word day is on March 6th, Saint Patrick's Day happens, we'll celebrate several family birthdays and this year Easter falls in March.  That means we are busy around here.

It also means we are likely having LOTS of fun.  Fun is what we tend to do best ;-)

Now, back to Cerebral Palsy Awareness.  As you can imagine, we are pretty aware of it around here.  But there are quite a few things I've found out this month thanks to this post on Reaching for the Stars.

  • Did you know over 800,000 Americans and over 17,000,000 people world-wide have Cerebral Palsy, the most common motor disability in children, with higher prevalence than muscular dystrophy, Parkinson’s disease, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome or cystic fibrosis.  Source: CDC,  National Institute of Neurological Disorders & Stroke (NINDS/NIH)
  • For example, did you know that Cerebral Palsy receives no dedicated, line-item federal funding for Cerebral Palsy research at the CDC or NIH??  Zero. Zip. Nada.  Does this cause to gasp and shake your head in disbelief?  It should!!  Can we change this?  Yes we can, but it’s going to take families and individuals with CP standing together and raising our voices effectively.
I'm excited to delve deep into Cerebral Palsy Awareness this month and I plan to share more information on it here.  

Wednesday, March 6, 2013

Wordless Wednesday - Bedtime

Emma loves hanging out in the clean laundry.  Chris dons silly headwear to hear the girls giggle!
Braces on and ready for pillow propping so she can sleep on her side

In big bed surrounded by pillows = happy little girl

Finnegan picture by her side, puppy in her arms, night light on, Delilah paying on radio = ready for sleep!

Julia's view from her pillow
Cuddle position = bee pillow pet snug on one side and a blanket on the other (under the comforter)

Friday, March 1, 2013

This and that

I saw a mantra on Facebook and it made me laugh.  I think I'll make a print and post it on my bedroom mirror because we all need a reminder once in a while....

Things are getting better around here.  It's not the same without Finnegan and Julia is still carrying her photo around with her and has us all kiss the photo of Finnegan before she goes to bed and she is still making up Finney songs but we are thinking of all the fun we had with Finney instead of how sad we are that she isn't here.

I even took a look at a Lab Rescue website and looked at the labs up for adoption.  There are some dogs that sound wonderful and I'm sure a great family will come along and adopt them.  We aren't ready yet to add another dog to our family - I would just expect the dog to behave and act like Finney and I don't think another dog in the universe is wired like she was ;-)  

I also looked closer at the application for a companion dog for Emma.  It takes 3-6 months to complete the application process and another 6-18 months to have a dog placed in our home.  That would put Emma at 7 years old and sounds like a good age to us so we will likely think about beginning the process of applying soon.  I spoke with the group at the Abilites Expo the last couple of years and it seems like they are a good fit for us because of their philosophy and location.  And the cost, too, because some companion and service dogs are way out of our price range.  I think a companion dog that can do up to 40 tasks will be a big benefit to Emma for both her independence and her social life.  Just the thought of Emma having her own service dog gets me excited!