Sunday, January 29, 2012

quote

I've recently become addicted to Pinterest. I've avoided it for weeks but can't help myself anymore. The recipes, the craft ideas, and more! I've found yet another website to be distracted by.... Upon surfing Pinterest this morning I came across the quote below.. felt the need to post it here.

"You don't know what you're alive for until you know what you would die for"

This quote, so simple yet so powerful, speaks of my love for Kevin. Being in love with Kevin truly does make me feel alive....and I absolutely would die for him. There's no question about it. 

Monday, January 23, 2012

it's contagious

One of my New Year's resolutions was to always find time to play. Having said that, I will absolutely admit in the past year and a half there were opportunities to play or have fun...but we never had the time for all of them. Do I wish we had the time? Yes, BUT we were either too busy running back and forth to the hospital, on the telephone for hours fighting with Mr. Insurance, dealing with whatever challenge was presented to us, and just living day by day. Did we have moments of fun and now share wonderful memories with our boys? Yes. Did we miss out on other things because of our situation? Yes, I believe we did. Do our 4 year old twins think that? I hope not or else or I'm screwed. We just had different priorities than other families and in our case they just happened to be life threatening.  All of that behind us, we moved forward thankfully because of our donor family. 

You know I'm hoping that this blog will be a way for our boys to see what happened...see how we embraced life during a difficult time. How we made it through and show them how many people care. Ever since our boys were born I kept a journal of sorts. Writing down all sorts of things about each of them. Who walked first, Quinton. Who talked first, Kaeden. First visit to the dentist. Potty training. Whatever it was, a milestone, a word, a sentence or something we did together.. it's a journal of every day memories to treasure in the future. My last entry oddly enough was October 5, 2010 where I simply wrote: "Ms. Joanne told me that Quinton got teary eyed at lunch because he had to go to clubhouse (after care at preschool). It was one of the first times I sent you and being a working mother I felt terribly guilty about it all. Hopefully you'll understand when you get older. " We all know what happened next and so here I am blogging away. 


Back to the matter at hand.... always find time to play. Today I'm working from home. Boys are home with me. Daddy working in his studio. Raining outside. Now that's odd...rain in southern California. I told the boys to get socks on, rain boots, and a jacket. We were heading outside to jump in puddles. BIG puddles. Lucky for us Daddy was taking a short break to get coffee in the kitchen, grabbed his camera and ran outside with us. A neighbor a few doors down saw us jumping in puddles and joined in our fun. Apparently watching people jump in puddles is contagious. Sure, afterwards the three of us were drenched from the waist down but that's why washing machines & dryers were invented. 

Now if this were a year ago, Daddy wouldn't have been able to just run outside...it would've been this whole charade of sorts finding a jacket long enough to cover his LVAD, the wound vac still attached to his arm, managing the camera for a good shot, being extra careful so that he didn't get the LVAD wet......but now he can just run outside. Thank you donor family for giving my family of four this very simple moment in time, a fun memory where we found time to play. 

Always find time to play.

Wednesday, January 18, 2012

"our normal"

Everyone has their own normal, right? Life throws you a curveball and you either swing & miss or hit it out of the park. It's really up to you. Make a new normal or a temporary one for whatever the situation is at hand. 

Some might say Kevin and I are the furthest thing from normal. Poke fun at us. Tell us we're two peas in a pod, made for each other. We get each other and being ourselves is what we do best. Living the way we do, it's our normal. 

On November 6, 2010 my facebook status was this: our little family was reunited for over an hour yesterday!!! boys had a great time with Daddy...kept asking him "where do you play here Daddy?" Daddy's reply was "I'm not allowed to play." Both boys frowned & quickly said "you're silly Daddy!" LOL probably the most normal hour the four of us have had in a long time. Back then we were taking normal day by day. Trying to create a normal family life while Daddy was in the hospital. We never knew the next time the four of us would be together in the same room. As parents we did our best to make our boys feel as comfortable as possible during those visits to Cedars. Walking outside at Cedars, chaperoned by nurses who became members of our family. Sometimes we only got 20 minutes and other times we got an hour together. It was "our normal" back then. Discussing Star Wars with Daddy, singing songs, using the force to open hospital doors...again, it was our normal back then.  

When Kevin came home with the LVAD I was determined to make our home life as normal as possible. It may have taken more than a few weeks to try and figure it all out but we did. We were motivated to live each day as normal as we were allowed. If we didn't then life would've just passed us right by. We would've missed out on all those "firsts" with our boys. First time on a ferris wheel. First time on a rollercoaster. Legoland. Living with the LVAD became our temporary normal. And then transplant came which again gave us a new normal with a whole new set of rules for the first few months.

My husband is presently six months post transplant. We are doing all the normal things that every other family is doing. And last Friday night could not have been more normal. My little family of four went out to dinner. Sounds normal, right? Let me explain. One of our boys has extreme food allergies. We have to be very careful who cooks his food, cross contamination, carry an epipen, the whole deal. The only restaurant we knew that was safe for us to eat at with him was Buca di Beppo. The past year and a half we were knee deep in LVAD's, transplants, and tumors that everything else had to hold on so to speak. One of my New Year's resolutions is to find more allergy friendly places for my son to eat. To make him feel as normal as possible and that having food allergies, while a challenge, will not hold him back. 

Our Friday night dinner was at Islands. We shared a ginormous plate of french fries. Made silly faces at the camera. Made 250 trips to the bathroom because that's just what twin 4 year olds do. Enjoyed each other's company, talking about our day, laughing, giggling.... and from a distance we looked like the typical, normal American family enjoying dinner out. If you saw us and knew us....you'd know that up close and at heart we're the furthest thing from typical. We are a family of four, finally at a point where living post transplant and "our normal" has allowed us to be on the same page. 

My silly family of four December 31, 2011.