Happy Birthday America!!!

Today may be one of my most favorite holidays… I’d say top three, unless of course you count my birthday as a holiday and really we should!! More on that another day… you know some day when I am so caught up on day to day blog stuff that I have time to just ramble.  Not to be confused with how I already blog!

Anyway, we had plans and they fizzled out at the last minute.  Which you may have already read about here (what a rant that was)  Anyway, so being the family that we are… with much guidance and assistance from my rocking husband we made the best of it… Again not a fan of making the best of it, but I am beginning to realize that sometimes making the best of it, whatever the it is, making the best of it, is better then sulking and crying whining over things not being perfect.

So we did what we do… I ranted, and whined and Mike packed our beach bags and we headed to our local favorite beach, not really sure you can call it a beach, Arlington .Reservoir  I love it there, I have loved it there since I was a kid!! Mike loves it and now I can say for sure that P & K are fans!!

We had a blast with our babes!!! Thankful for days like this!!!

Also want to wish my cousin Beverly who really is more like the Big Sister I never had…a very Happy Birthday!!!! I can remember as a child always being jealous that she got FIREWORKS on her birthday and I didn’t… Wishing you a wonderful year! XO

 

 

Sometimes it’s hard not to let your mind go there…

This post was very difficult to write, it may be difficult to read. I thought about not publishing it and after the 30 minute break I needed to cry in between, Mike thought I wasn’t ready to write it. I am. And in my promise to keep it real I am sharing it.

Sometimes its hard not to let my mind go to the place, where the ending of our story is not a happy one. For the most part, I seem to block that place out… we all know that it is a possibility…not a probability, but a very scary possibility.

Maybe it’s a good thing that I have that lingering in the back of my head, it makes me live each moment and each day! I try to soak up the moment, the memory, no matter how small or typical it may be, never trying to never to take a moment for granted.

But, knowing me and knowing my knack for wanting perfection…not for everything in my life, but I want each first to be just right, the kids in perfect clothing, perfect moods and enjoying the experience as much as I think they should. I know not my finest quality. But, I have tried to change and haven’t been successful, so now we all just try to work with me on it.

So now with that bad ending looming in my mind…EVERYTHING needs to be just perfect, for the reason being that it may be a last. That means Mike’s birthday had to be celebrated in a HUGE way and even though Katy’s trip to the ER through off our plan…both kids stayed up until 1030PM because they had to be there to sing Happy Birthday…there may not be a next time.

Today we went to Kimball’s…Mike suggested skipping the bumper boats (to save money) I wanted to skip the bumper boats because I was sporting a skirt. But we had to do them…what if its our last visit to Kimball’s. Let me tell you neither Mike or I have any regrets…Katy LOVED them and spent the rest of the afternoon talking about the boats and crashing mommy and brother.

Our plans for the 4th (happens to be one of my favorite holidays) fizzled out at the last minute. So we were left with nothing to do and I cried for a good 40 mins… frustrated that I spent a ridiculous amount of money on Kathryn & Patrick’s festive swimwear, oh and the patriotic outfits for fireworks.

I have always had the need for things to go a certain way. Admittedly the certain way is usually my way. And now its even more necessary, I feel that so much is riding it.

That’s not to say that sometimes I am normal and think that if Katy girl asks me one more time what I am doing… I will LOOSE my mind. Because that happens to, and more often than not I feel terrible mommy guilt after.

See, I find myself in a very difficult place. Let me try and explain. I want to raise Katy to be a kind, caring, responsible human being, you know it case this all ends with a fairytale ending. But, part of me never wants to see her hurt, or angry or frustrated, I want her to want for nothing. But, again if we get the fairytale ending we are all hoping and praying for, once she gets her new heart…she will not be a very nice little girl. She will be Verucka Salt…you know the little puke from Charlie and The Chocolate Factory. I just want to be the very best mommy for Miss Kate and Patrick. I know that parenting is a difficult job I just never thought it would be this hard.

Kimball’s Farm

Today we went to Kimball’s farm, or as I refer to it Disney World of Westford.  (I know can you believe it July 3rd, and it was our FIRST visit this season) I refer to it as Disney World of Westford, because when I was younger and actually for much of my adulthood, Kimball’s was just a yummy ice cream stand, and they had such delicious ice cream it was reason enough to travel there, sometimes from Somerville, MA.  Then they added an AWESOME mini gold course…and now bumper boats, and a huge arcade, oh don’t forget the hot air balloon rides and exotic animals.

Mike and I have had many date nights at Kimball’s especially during my pregnancies ;)! 

It was fun to head there on the super hot day for some yummy cool relief! What is a better dinner on a hot summer night than Kimball’s ice cream! If ice cream does not have enough nutritional value for you…no worries they now serve fried clams and ice cold beer!

Anyway so we finally headed up…we ate ice cream! K & P shared a strawberry kiddie cup with two cones, I had an cherry vanilla chocolate chip Kiddie cone, and Mike had his favorite…he gets it EVERY.SINGLE.TIME Raspberry Chocolate Chip…again kiddie cup because they are THAT HUGE! man, that man is loyal!!!

Then we went on the Bumper Boats Katy & Daddy vs. Mommy & Patrick ( Mommy & Patrick had a severe handicap…since mommy was is a skirt,  that proved to making steering a tad difficult.

We all had blast…never mind that I got stuck and had to be rescued by the 13 year old Kimball’s worker who thought I was so lame!

 

 

Transplant Update

June 24th

Sometimes, I need a few days to reflect after our Transplant clinics…since they are so emotionally draining that it becomes physically draining, and truth be told, sleep has been hard to come by. ( I am working on that with my doctor, since this mama needs some rest, and sadly Ambien isn’t working. It was great while it lasted.)

Today Kate had a busy day of x-rays and blood work, as well as the typical check in with Dr. Blume.

We also met with the transplant Surgeon… the surgeon that will hold both of Katy’s hearts in his hands. The heart that grew inside me and has kept my sweet baby growing and living and laughing for the past two and half years…the heart that is failing my princess. He will also hold her brand new donor heart, the one that we hope and pray will get her through the next 20 + years of her life. The one that she will play sports with, and perform in dance recitals, go to prom, getting her through college, walk down the aisle and maybe, just maybe see her through a pregnancy of her own.

I shook that surgeons hands, and it wasn’t until the moment my hand touched his, that all of the above hit me. AMAZING

I use the word AMAZING a lot when describing this experience. Its really an experience that I can’t explain and unless you are one of the few families to have experienced it… I don’t think I can ever relay to you exactly what its like to be living our life.

The good news is that the surgeon thinks that Katy is a great candidate for transplant. Does he wish she had a little more weight on her…yes, but don’t we all. However, he supports our decision to not do the G tube placement at this time. He strongly believes that until Katy gets her new heart, she will not gain any significant weight even with the placement of a G tube.

So, that is where we are. We have 3 more meetings and Kate has to have a Kidney function test and they we will be all set to listed. We expect Kate to be listed as soon as Wed. July 7th or as late as July 14.

Katy Bands are HERE!!!

The Katy bands are in and the Be A Rock for Katy Fund is up and running!

Visit Be A Rock For Katy

Huge, Huge Thank you to our dear friend Deb Butter…who took my little idea and RAN with it. Her compassion, understanding, knowledge and dedication to put this together warms our hearts, and just might make what seems impossible and overwhelming a little bit easier.

We are grateful to everyone who donates to The Be A Rock For Katy Fund, and proudly sports a Katy band. The funds will help our family greatly during these next few months, but more importantly we hope to use the Be a Rock for Katy Fund to give back to Children’s, the hospital that has given us and so many families like us so much.

Thank you!

Much Love,

The Murphy’s

Pool Fun

WOSERS…has it been HOT!!! Gotta love New England weather… it goes from one extreme to another rather quickly.  I posted previously that Katy & Patrick were not beach bums…and that is still true although we are working on it.  They are however little fishy’s in the pool…kiddie pool, above ground pool, in ground pool, heck in a jam a cool bath tub of water will do.

 

 

“helping” daddy blow up the kiddie pool!

Filling up the pool…Katy LOVED the hose!

Best Friends…the bond these to littles share…is some kind of wonderful!!

This little boy…has stolen my heart, and ran with it!! All he needs to do is

smile at me with those big brown eyes, and oh my heart…MELTS!

Hero

In the past month or so, since we learned that Katy was going to need to be transplanted sooner than later. The outpouring of our friends and family has been overwhelming. Maybe overwhelming isn’t the right word since I think that has a negative connotation… and I mean this is the MOST positive way.

Meals have been planned for us on Tuesdays and Thursdays (those are cardiac clinic days, I can’t tell you how wonderful it is to have a yummy, home cooked meal waiting for us.) Thank You

Babysitting has been a non issue and non stress thus far and that is huge! Thank You!

A very good friend is in the process of organizing the Be A Rock For Katy Fund. Which is a HUGE undertaking and something I am learning will be a necessity if the $90 we spent on parking is any indication.

A Facebook fan page has been set up with well over 400 members with kind words and prayers and messages that get us through the day.

Friends have been there to listen to me, cry with me, scream with me and laugh with me…because sometimes, you need to laugh.

A lot of people have said to me “I don’t know how you do it” , “You are amazing”, “ You are the strongest woman I know” “ There is NO way I could do what you are doing” “Katy is so lucky to have you and Mike, you are the best parents in the world” “You are my hero”

Besides the normal reaction of blushing and saying… oh you do what you have to. My response to some of those statements are:

I don’t know how you do it…

Some days most days I don’t want to. Most days I want to just stay in bed curled in the fetal position and cry. But I have three reasons why I don’t…Mike, Kathryn and Patrick. That’s not to say sometimes I don’t cave and crawl in to bed when K & P are napping, or cry myself to sleep in Mike’s arms, cause I do.

You are amazing

I am far from amazing… Mike does a good job at making me look amazing, however he is the one holding this family together. He is my ROCK!

You are the strongest woman I know

Maybe I am the strongest woman ‘you’ know… but I know lots of women stronger than me.

There is no way I could do what you are doing

I am sure if you were faced with the same situation, you would find a way to do what I am doing… I really have no choice, have you thought about what my alternatives are?! Don’t, because there aren’t any.

Katy is so lucky to have you and Mike, you are the best parents in the world

Katy is a very lucky little girl, she has lots and lots of people who love her, a great team at Children’s, a brother who ADORES her, and a mommy and daddy who thinks she hung the stars…she is our shining star, our miracle, our Rock star! As far as Mike and I being the best parents… we do the best we can.

You are my hero

I’m far from a hero… the real hero is KATY!!!

A day at the Zoo

No, not just a day at the Murphy house…which often resembles a zoo, or maybe its a pig sty I’m thinking of! Southwick Zoo,is my favorite semi local zoo. We went with The Murphy’s of Lowell to celebrate Father’s Day. It was a FABULOUS day… even though it was a bazillion degrees and we had to dodge torrential downpours, with a little bit of thunder and lightning! You know just another day in paradise.

It is IMPOSSIBLE to get a normal picture of the 4 of us. This one will have to do!

Patrick & Logan Best Buds!

Patrick is not so sure about this parrot… being so up close and personal!

Mike, said no more babies…(well really we both decided that was best.

I know I could convince him of one more, if I really wanted one!!!)

I wonder if he’ll let me have a piglet!!!

Smiling Murphy Boys!!

Katy loves her Big Brother… I think its safe to say the feeling is mutual!

HA! Here we are trying for a family photo, again! FAIL!

The next two photos catch a glimpse of how HILARIOUS

Mike feeding the deer was!!!