Thursday, October 17, 2013

My flavor

Falling in love doesn't happen every day but when it does, look out. You always hear people telling you that it'll happen when you least expect it. Some even say they see fireworks when they kiss for the first time. Goosebumps when your love enters the room. Swept off their feet. They stole their heart. So many different sayings about love. "Falling head over heels" is one that absolutely holds true for me. 

I happen to be a very lucky girl. You see, on this very day three years ago, the waiting had ended, and the weight of the world had been lifted from me.  One of those moments you can't believe is happening.  I was physically walking towards him, my heart was beating so fast. Was he really awake or was I dreaming? Then I walked through those doors and the ICU staff was grinning from ear to ear in my direction. I couldn't hear a word they were saying to me. It was a too good to be true deafening experience. As my feet got closer, I turned the corner, and there he was.....looking right at me reaching his hand out towards me. With tears running down my face and a smile so big...I can honestly say at that very moment I fell in love with him all over again. The challenges ahead of us didn't matter because together we are a force to be reckoned with. To this day, he still rocks my world. He's my flavor.  





Sunday, October 13, 2013

Autumn memories

Autumn has got to be, hands down, my favorite time of the year. 

One of my earliest autumn memories is watching my brother and sister raking the leaves in our yard into these giant piles. Then I can recall that silly feeling as if it were yesterday .... taking that running jump straight into a giant pile of fresh raked leaves. Leaves everywhere, dust, dirt... was all worth that one jump into the pile. Who cares if you had to rake them again... so exhilarating. 

Another autumn memory for me is the pink sweater. For those that know me, they knew that when the pink sweater made an appearance, it was officially autumn. The fresh smell of coldness in the air. Wearing layers of clothes as opposed to a jacket. The pink sweater provided warmth yet so fashionable in a sea of orange, yellow, brown, and gold. I wore it for years until I had to finally retire my old friend. 

My first weekend getaway with Kevin was in autumn, with some friends for Oktoberfest in the mountains. Yes, the pink sweater was there. That was a weekend to remember for sure. Dancing to polka music, drinking German beer, laughing until our faces hurt, and enjoying the company of our friends. Good times indeed. 

This autumn was the first year in three years where thankfully no one has reminded me of you know what.  I'm guessing we've all reached our new normal. We are "living" post transplant as opposed to just living post transplant. Are you following me? We've come to some sort of acceptance, possibly all moved forward. It's also quite possible that everyone remembered but finally respected the fact that I prefer to remember the good about my favorite time of the year. 

For my kids, I'm hoping their earliest memory of autumn is when Daddy proved the family motto true......that we don't give up. He never gave up and we never gave up on him. Where there is a will, there is a way. I'm hoping when they're in their twenty's they recall all of our friends and family that stepped up to the plate with us, encouraged us when we struck out, and stood next to us cheering on their father when he hit the grand slam we were all waiting on. That our friends and family are the "rise to the occasion" type of people. 

For me, my newest memory of autumn is one that I will never forget. It's a story I enjoy telling over and over again. I get goosebumps just thinking about the events of that particular day. In a few days it will be exactly three years when I looked into Kevin's eyes and fell in love with him all over again. 


Friday, September 13, 2013

Move forward

A quote from a television show I found some truth in....

"Trauma always leaves a scar. It follows us home, it changes our lives. Trauma messes everybody up. But maybe that's what pushes us to move forward."

Tuesday, August 20, 2013

grocery bags

I can't remember when the whole save the earth, in your face,  movement started happening but I do know I have about half a dozen (probably more) of those re-usable grocery bags. Friends of mine have them, family members, and people I don't know have re-usable bags.  A few stores have even stopped using plastic bags so you're forced to help save the earth and get a re-usable bag. Some people have really fancy ones or ones from Target, Trader Joe's, you get my point. Recently I acquired this one. It's a Donate Life re-usable bag. The bottom right reads "reuse." GENIUS if you ask me. 

I'm always telling people, reduce, reuse, recycle. This should not only apply to our paper products, plastic bottles, soda cans but that it should also apply to our organs. If I'm dead what the flip am I going to do with my organs? I'd love it if I was able to help save a life just like our donor saved Kevin and maybe other lives for all we know. It's something to think about and something to share with your friends and family members.

I've checked off the box that says yes to donating my organs, have you?


Tuesday, July 2, 2013

this time of year



This fourth of July will mark two years since Kevin got the call for a new heart.

The fifth of July will mark two years post heart transplant for Kevin. 

This time of year not only reminds me of how grateful I am but it also reminds me of a time when our friends and family stood by us through the storm. The family that gave themselves so freely to us in our time of need. This time of year I get very sentimental and emotional. I play back that phone call, those feelings, the drive to the hospital, the waiting, the joy. When I flip through the clothes in my closet I always stop at the red shirt I wore that day. I can’t help it. I’m surrounded by memories that I get so caught up in smiling at them all.

This time of year always reminds me of how much I appreciate my friends. In particular, those that were with me in the waiting room, the princess blanket that kept me warm, the ones that held my hand, the phone calls, the text messages, those who didn’t think I was crazy when I asked “do I look OK? Do I need more lipstick?” They knew my reasoning. The ones who spooned me, fed me when my hands were too tired to pick up the fork, and those who are still my very closest friends today.

This time of year reminds me that generosity of ones self comes in many different forms. For this, I am grateful. Whoever you are, wherever you are, thank you for my husband's heart. My children and I are thank you from the bottom of our hearts. 

Saturday, June 15, 2013

10 months goes too fast...


Yup, me and Kev went to kindergarten culmination last week. Where did 10 months go? Wasn't I just getting all teary eyed about the first day of kindergarten? Well, a lot has happened in 10 months. Now that summer is here I'm hoping I have more time to blog about it all because I've certainly had enough time to digest. For now, I'd just like to thank the wonderful teachers at my boys elementary school, the new friends we've made, our family & friends, science, Cedars Sinai Medical Center doctors & nurses, and our donor family. Whoever you are, wherever you are, thank you for giving my husband a new heart.....and thank you for keeping my little family of four together. You rock!

Register to be an organ donor today.
You have the power to donate life

Tuesday, May 28, 2013

Chocolate chips

Everyone that follows my blog knows one of our kids has severe food allergies. It's totally manageable and now that he's older, he understands he can't eat certain things. It's much easier keeping him away from certain foods at 6 1/2 years old vs when he was 18 months old. With that said, there is one brand of chocolate chips that I can use when baking... "Enjoy Life." I usually buy them at my local Target. Anyway, the past month my local Target didn't have them in stock. And as it would happen, my child was asking for chocolate chip cookies. I quickly put my core group of twin mamas into action, asking them to keep an eye out at their local Target. Within a week I had some Enjoy Life chocolate chips. I have the best friends EVER and was so grateful to my friend for finding them. Cookies were made the same day with the entire bag of chocolate chips.

I was having a bad day recently (after I made cookies the day prior) and I get this perishable package in the mail. I open it to find I've hit the jackpot in Enjoy Life chocolate chips! There was no card...sneaky friends of mine. Once I discovered who it was I couldn't have been more grateful to her for a variety of reasons.

1. her thoughtfulness
2. she told me I was a great mom for wanting to make home-made chocolate chip cookies
3. she made me smile on the outside and inside
4. she reminded me that all bad days are easily cured with chocolate

Having so many chocolate chips on hand I got to thinking....hmmm, graham crackers, marshmallows, and chocolate = s'mores! Our kids have never had one. I had all of the ingredients. Yes, I had a bag of marshmallows in my pantry. I melted an entire bag of chocolate chips, poured it into a flat container, and popped it in the fridge overnight to make individual chocolate pieces the size of graham crackers.

The next night Kevin got the fire pit going in the backyard, we were all bundled up....yes, we live in Los Angeles and we were bundled up. It was 60 degrees outside, don't you bundle up once it gets that cold? The kids were beyond excited to be up past their bedtime. It was family time in the backyard with chocolate involved. I went inside to grab everything for the s'mores and saw the chocolate chip bag sitting in my fridge. There it was staring at me.... Enjoy Life. I paused for a brief second and smiled. My chocolate was telling me to enjoy life. Love it. And we all loved those s'mores.

Now get out there and enjoy your life. You only get one try but if you're living post transplant or part of a family that is, it's like getting a second go at life. So eat chocolate, spend time with your family, hug your kids, find time to play, believe in yourself, and love.

The memories that were created this past weekend wouldn't have been possible without our donor family. Whoever you are, wherever you are, thank you for giving my husband the gift of life.

Friday, April 19, 2013

National Donate Life Blue & Green Day

Today, April 19, is National Donate Life Blue & Green Day. People all around the nation are wearing blue and green to support Donate Life. My friends and family are taking pictures of themselves wearing blue or green and posting it on facebook. The ongoing support from them is overwhelming. 

Just this morning I was scrolling through my facebook home page feed and saw Help Hope Live post the picture below. Staring at it I was moved to tears because after all , it's true. Over 118,000 people are indeed waiting for a life saving transplant. But let's also remember the very harsh fact that some lose their battle waiting. 

This blog entry is in memory of my husband's donor and his family, because without their generosity to donate life, my little family of four wouldn't be living post transplant. It's in memory of all the donor families across the nation who said yes to organ donation. It's in honor of the living donors. Your generosity is beyond amazing.

This blog entry is also in memory of the people that lost their battle waiting and it's in honor of the families attached to them. I've never known anyone very close to me who lost their battle waiting until just recently. I still cannot fathom it all. Words like unfair come to mind. My dear friend, a fellow LVAD caregiver,  lost her loved one. Since it happened I have been without words. There's so much I want to say but I can't put it into full sentences. I can only say this:

"In honor of you Joe, the original warrior, and his wingman, Jenny. We will love you forever and you will never be forgotten. Always by your side."


Wednesday, February 6, 2013

Breaking Bad!

Breaking Bad.  Anyone watch this show? This show is great for so many different reasons and on so many different levels.

 Kevin and I started watching Breaking Bad when The Walking Dead went on their mid-season hiatus. So many friends were watching it and we wanted IN!

Recently I was convinced the Breaking Bad RV was parked out on one of our local streets. I thought our neighbor was Hank Shrader when I saw him driving his new car...just like the one Hank drives in Breaking Bad. I'm just extremely impressionable when it comes to really good TV...just the other night I was dreaming that I was running from the Mexican cartel. I'm dead serious. I was driving and Jessie Pinkman was in the passenger seat calling Mike to help get US out of a pickle. Funny, right?

Anyway, my point is that while watching this show with Kevin we actually had more than a few interesting conversations afterwards. We totally related with Walter and Skylar. One episode in particular Skylar assumed Walter wanted to go through with chemotherapy when he didn't. Those couple of weeks when Kevin was unsure about transplant. Think about it...a surgeon takes out your heart & just simply puts in a new one. Not so simple, just like chemotherapy. Skylar taking care of the Mr. Insurance matters. It for sure struck a chord with me. More recently the whole Hank and Marie bit. I so related with Marie dealing with Hank at home somewhat helpless. Although we had two sets of parents hovering over us. Sure it was a short time but Hank's anger towards Marie and the bullshit as a caregiver that she dealt with from Hank....holy crapballs I thought it was December 2010 in our house.  And when I say that I will totally admit that while I dealt with caregiver bullshit...Kevin had to deal with me, the two sets of parents hovering, AND learning how to live all over again, all with a smile on his face. [insert us also raising twin 4 yr olds here] He was the one in the precarious situation and only wanted me to do certain things until he was able to do them on his own. The things I had to do - I never imagined I'd be doing them for my husband in his 30's...maybe in his 70's...and I'm certain he felt the same way.

Again, never in a million years did I expect to be so attached emotionally to Breaking Bad. And why the hell didn't I think of making crystal meth??!?!??!?!?!!! Oh right, I failed chemistry, biology and anything that ended in an ology. Dammit!

If you can't hold on, ROCK ON.
And just thinking about some of the other episodes that had a huge affect on me. Everyone has a breaking point. Everyone. Whether you break bad or not... that's your decision. We just started season five and yes, Jonathan, from now on I"m holding on, sweat pouring off my face, with my heart beating in my throat excited to see what happens next.

Breaking Bad... does it really have to end in season five?


Tuesday, January 22, 2013

Genetics

You know when I started blogging in March 2011 I never knew I'd be right here where I am today. Back then no one knew why Kevin had heart failure. It was all very unexplained. Confusing. Be that as is may, we plugged along. Enjoyed the simple things in life, did our daily dressing changes, clinic appointments, fought with Mr. Insurance on a daily basis, and eventually the call came for a new heart.

That call for a new heart was one that clearly changed our lives forever. It's one that I often talk about has not only saved my husband but has saved my little family of four.

That call for a new heart helped doctors discover a very rare tumor that indeed caused Kevin's heart failure. A tumor that has actually been inside him for quite some time. It for sure explained a lot of incidents in his past, that looking back on them, were not isolated. They were all related to one another with a tumor being at the center of it all.

Why am I talking about this? Well, this rare tumor... it's genetic. It's so genetic and so rare that it makes sense (while being horrible Kevin had to endure all of this) why a perfectly healthy 36 year old man who goes to the gym, and doesn't smoke or do drugs, had heart failure.

Having said the "it's genetic" part.... what does it all mean? Well the genetic doctors tell us that it possibly means one of Kevin's parents is the carrier of said gene that can produce this rare tumor.  Now, just because you have the gene doesn't necessarily mean your body will produce the tumor... both of his parents are very healthy. So, once his parents are tested and the results are in, then the proper side of the family can be given more information. Meaning only that side of the family is at risk for carrying said gene.  Is it possible for both of them to be a carrier? Maybe. I don't know I'm not their genetic counselor. I'm giving you information that was given to us in our genetic counseling from doctors who are the best at what they do.

Everyone following me thus far?

Unfortunately this means that since we have two boys, they are at a 50% risk of said gene being passed on to them. They're both being tested - finally - after Mr. Insurance decided NOT to pay for the genetic test. Ah, I forgot how much of an ass Mr. Insurance really can be to its members. Regardless, once we find out we'll know what to look out for should any symptoms arise. And with Cedars Sinai in our corner and with an absolutely wonderful pediatrician for our boys...I know we'll come out on top.

And sure the knowledge of which side of the family it comes from may not seem important to outsiders. I mean out of sight out of mind, right? Why get tested, right? Well I'll tell you why - because there are too many on both sides of the family and too many with little kids. They have a right to know. They have the right to decide how to proceed with the knowledge of said gene.

Ya know, knowledge is power. It's power that was given to our family the day we got that call for a new heart. Organ donation saved my husband and my little family of four. It's also potentially saved immediate family members and their children too.

Whoever you are, wherever you are, thank you for saying yes to organ donation.

Thursday, January 3, 2013

365

An entire year made up of 365 days has given me so much and at the same time has taken a lot as well. Having said that, I was fortunate enough to share my every day of 2012 with the three loves of my life: Kevin, Kaeden & Quinton.

On the last day of 2012 I found myself sitting in a hotel room in Pasadena. My husband was at float judging for the Rose Parade (he was a float rider for the Donate Life float) and I was waiting for family to arrive. As I sat there, a few thoughts were racing through my head about our entire year together as a couple and as a family.

On New Year's morning I sat in the grandstands at The Rose Parade with both boys and in-laws. It was a chilly 39 degrees at 8:00 am and we were all anxiously awaiting the Donate Life float. The float that Kevin and I had volunteered to help decorate only days prior. The float where Kevin and I had dedicated a rose in honor of our donor family. 

About halfway through the parade the float finally reached where we were and it stopped right in front of us. Everyone was standing up, clapping, cheering, waving, and taking pictures. I was staring at Kevin and he was desperately looking for us in the mass of people .... I saw him smiling and mouthing to me "I can't see you." But we certainly saw him. As I was cheering for him, tears running down my face, and then all my thoughts from the previous day came to what I always knew and what I've said time and time again. With hope, love, and the spirit of generosity all your dreams really can come true. 

Kevin, I look forward to whatever 2013 may give us because as long as you're by my side I know we'll be fine.