Sunday, September 23, 2012

Sunday Fun Day

 

Welcome Fall… I love Fall.  Fall is my New Year (no I am not Jewish…just must have a teacher schedule forever embedded in my brain)

Fall means new routines, new shoes, new backpacks…oh and how can I forget new school supplies!! Ahhh how I love a fresh new pack of post it notes and new pens… current favorite: Paper Mates Ink Joy. I always seem to miss Spring cleaning so come Fall our house is more than ready for a reset… time to put away all the half packed beach bags… and light some yummy fall candles. 

Fall also means apple picking and I can tell you I am never happier to be a resident of New England than I am in September.  Apple picking is my favorite activity.  I love picking and tasting apples… I love pictures from the apple orchards and apple cider donuts!

We went Apple Picking at Honey Pot Hill  Orchards in Stow MA this weekend with a bunch of families from “ It’s My Heart”

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Saturday, September 22, 2012

Long Time No Blog

You know I am over due for a blog update when my husband reminds me I should really update the blog.

I know that I am overdue and its not from lack of trying I have a few entries started and I just couldn’t find the words.  Sometimes this process of documenting our life good and bad is very therapeutic for me, and I know it will be cherished years to come when this day to day life as a mama with a young family is just a distant memory.  What a gift it would be for me to have an opportunity to read what day to day life was like for my mom when she was busy  raising three kids.  Thankfully my mom was a big picture taker and I am the first born so lack of pictures are not the issue.  The issue is the story… what was my mama thinking as she experienced my first Christmas,  or when she was helping me blow out the candles at my first birthday?

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I know that I want the stories to go along with the pictures not only for myself, but for Katy & Patrick. I want them to know what life was like in our family.  What was important to us, what got us through the difficult times.  Who we spent our time with. 

At the same time I sometimes find it hard to find the words to write what I am feeling.  Or I just don’t feel like sharing another Debby Downer Post.  Because somewhere along this past year this blog has become less about The Murphy Family and more about medical updates on our Rock Star. Updates on Katy and her special heart are important and I definitely want/need that documented, but Katy’s heart doesn’t define our family, It doesn’t define Kate, it never has.  These days it appears to be more front and center in both our minds and day to day life.  Just like everything else in life I need to find  that balance. 

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Finding balance has been a struggle for me in many if not all areas of my life.  I wonder if its because of our unique situation of having a medically fragile child, mixed in with severe anxiety and depression due to having said medically fragile child.  I just find that lately I don’t bounce back as quickly from admissions and or procedures that Katy has to endure.  I don’t know if it is because they are happening more often thus the time in between is shorter and I don’t have time to rebound, or that her medical needs have changed so dramatically over the past six months that it is impossible to deny that Katy is very sick… that Katy is dependent on her Milrione pump which I hear every two minutes… and that the call that will change our lives is imminent.

DSC_0069DSC_0070DSC_0072DSC_0073   (Katy all ready to go… I won’t tell you how many trips that looked like this were made before this one…if you came to visit and so Katy’s hospital room you can probably guess that it was more than 1 or 2)

Well that was a long intro…

Katy girl is doing well.  We have had a few hiccups with her Picc line and have spent more time in the ER than we would have liked. (Still 1000X better than being impatient.) Thankfully since having her line replaced last week we have had no issues with her line.  Milrione has proved to be the miracle drug that has taken Katy from so so for transplant to should be a rock star through transplant and recovery.  She has FINALLY after two years and lots and lots of calories… gained significant weight.  Rumor has it she may even place on the growth chart less than 5% but on the growth chart and that is AMAZING!! She has grown so much (6 pounds and 1 inch in 8 weeks) that she required a whole new wardrobe.  She has finally outgrown her 12, 18 & 24 month clothing. There have been a few calls for possible hearts for Katy… in which she was #3 or 4 in line for…which is why the team thinks the call for the perfect new heart for Katy should be soon. 

It looks like Katy will be going back to school!!! A couple times a week for a few hours.  I am required to be in the building with her just in case something should happen to her line.  We are all very excited that she will have the opportunity to be back at the Dolbeare School.

Patrick is starting Pre K at Little Treasures this year… I can’t believe he is already moving up to an older classroom.  Little Treasures has been such a blessing for our family especially Patrick.  It’s his retreat from this crazy life!! He loves his friends , teachers and most of all outside time. 

DSC_0040DSC_0041           ( I wonder when Patrick will decide that doing dishes is no longer fun?)

As for Mike and I… oddly enough we are still madly in love! Getting each other through the good time and bad!

 

 

 

 

 

Wednesday, September 05, 2012

Some Days It’s Hard to not say “It’s Not Fair”

 

Today is one of those days.  I am writing through the tears, in hopes that getting it out will make me feel better so I can face another day.  Today is the first day of school in Wakefield.  Facebook is flooded with all the adorable First Day of School photos… there are no first day of school pictures for my girl.  Katy is at the Children’s Hospital ER with a not one bad line but two… which means she will be getting and new IV while the team decides what to do… it means more then likely she will be admitted and our family torn a part once again. 

My poor baby she has been through so much… and its so not fair.  I wish I could do it for her.  I wish she never had to see the inside of that damn hospital again.  I wish that this was not her normal….this is NOT normal.   I wish that she didn’t have to be  amazingly stronger than any child should have to be, stronger than most adults. 

I wish that my son… didn’t have to worry about his sister.  He has a concerned look that not 3 year old should have. 

I wish that Mike and I could go on a much needed vacation… oh how we dream of having our toes in the sand and a cold beer in our hands. 

I wonder what it would be like had I not lived the last 5 plus years in constant fear and uncertainty.  Would I be a better wife, mother, daughter, friend.  I wonder what it would feel like to sleep through the night… I wonder what it feels like to be rested. 

I worry about my husbands health… I worry that he is to busy taking care of us… that he is not taking care of himself.

I wonder if our marriage will survive the constant beating it has taken over the last 10 years. 

I wonder if we are being fair to Katy…. putting her through all this. Are we being selfish.  When is it to much intervention. 

Please keep my sweet wonderful girl in your thoughts and prayers today.  Please hug your sweet children a little tighter and thank god for their health.