Monday, April 4, 2011

[Visitors] I'm from Jersey, bitches...

Wow, I've been debating whether or not I should blog about this topic.

This blog has been nothing but cathartic for me. It's been sitting in front of my computer, on my time, typing away my feelings, crying, and then it hits me..... i click "publish post" and there is this astronomical weight lifted off my shoulders.

Let me preface this blog entry with a few things:

1. Kevin & I are extremely lucky that both of our parents are retired AND had the means to be here to help us through what was the worst time in our lives.

2. Kevin & I are extremely lucky to have found such fantastic, loving, supportive friends in the local socal area. Yes, we live in LA for those following/reading my blog that don't know where we live.

3. I am extremely grateful to all of our family that took time out of their own lives to spend time here in LA, in our house, to help me & our little family. I am forever grateful for the unconditional love you gave to not only me but to my boys as well. We so needed it and we love you for every last bit. Each one of you that visited has touched my life in such a way that I am speechless. I will NEVER forget your kindness,  the never empty gas tanks, and your understanding of our situation. I needed you. Kevin needed you. The boys needed you.

The topic of "visitors" wins!!!!!

For those not aware of our living situation, we had visitors in our house for 141 days. Do you feel as if all the air was just sucked out of the room you were sitting in? Wrap your head around THIS for a brief moment......

One hundred and forty fucking one days. The first 13 days my husband was on life support, fighting to stay alive, I had no idea if or when he would wake up. [Remember, VISITORS in our house.] After my husband woke up, the emotional roller-coaster was up & down but if I'm being honest it was VERY down inside the hospital and even more down on the drive home. [Remember, VISITORS in our house.]  The many nights after leaving the hospital when all I wanted to do was go home & crawl into bed but couldn't. [Remember, VISITORS in our house.] The many nights I wanted to go home, turn on the TV, watch something senseless, alone, feet up, NOT having to discuss my day or Kevin's status & drinking a glass of wine but couldn't. [Remember, VISITORS in our house. ]After my husband was discharged, holy shit the emotional roller-coaster doesn't stop, does it? Different struggles present themselves every day. [Remember, VISITORS in our house.] Christmas comes & goes. [Remember, VISITORS in our house.] The many days/nights I just wanted to be alone in my own house but couldn't so I decided to "take a shower" instead. Oh right, "take a shower" was code for my alone time for myself. It got so bad that I stashed bottled water, magazines, pen & paper under the bathroom sink so that when I would "take a shower" I could get some much needed alone time. [Remember, VISITORS in our house] When friends of mine (I love you) would offer up their house so I could drop by, take a snooze, and not worry about being bothered by anyone. [Remember, VISITORS in our house] The mornings when people visiting us would offer to "help" me with preschool drop off when all I really wanted to do was drop off my kids, roll down the windows in my car, blast the car radio at high volumes, and cry the ENTIRE 8 minute drive home to my not empty house.

Now I'm certain I was no peach to live with... I'm sure I was bitchy most times but seriously? I was sleep deprived for more than 30+ days. My life had totally changed without notice! No one has any idea what I've been through personally, no one has any idea where I've been or the shit I've seen that I WON'T share.....

On the 142nd day I sold the futon in our guest room. It's gone. The guest room is now the boys play room. Anyone visiting us now has to sleep on an air mattress in our living room OR stay somewhere else.

Am I horrible? Probably. But you know what the kicker is? Kevin is on the transplant path......we're not on the list yet because of Mr. Insurance and please I'm so not ready to blog about that topic yet.  We were told in our "transplant education" that the first three months after transplant take a toll on the caregiver. Hi, that's me! The first three months take a toll on the caregiver because of all the biopsies that need to be done on the patient, the back & forth to clinic, the medication management, and on top of it all, the emotional part. I'm absolutely going to have to lean on our family yet again to help us out. The questions I have are:

Are either of our families going to want to help us out after reading this blog entry?

Where do I find the money to pay for an apartment or even one of those hotels with kitchens so no one has to "stay" in our house?

How do I keep my sanity this time around?

Where & When am I supposed to find time for myself? Where do I find time for me & the boys? When? Seriously? Can you answer me?

Now that you've read this, let ME tell you something. There isn't anything I wouldn't do for Kevin, the boys, my friends, and my family. I would fight to my death for any of them. I would sacrifice my life for any of them. I wear my emotions on my sleeve. I am who I am. My mother & father raised me to stand up for myself, to stand up for anything I believed in (currently fighting Mr. Insurance, again, not ready to blog about that yet), to fight for myself and to fight for those that I love.......well I'll be damned if I'm going to go against anything my parents raised me to do cause my parents are pretty freaking fantastic...... I'm from Jersey, bitches.... I will find a way, I will find answers to my questions above.....

Thanks for letting me vent.... Clicking the "publish post" button will feel so good in a minute.....


  1. Not only are you going to have an awesome movie, but you are also going to have a best selling book. After, of course, Kevin has a fantastically functioning heart and all of your visitors have left except for the infrequent happy visits 'cause "we are in town and want to say hello." I'm so proud of you. You are one freakin' fantastic friend! (And I say that with my hands waving in the air - maybe one day this Valley girl will be able to talk Jersey style!) :-)

  2. You are an amazing wife and mother and i am sure a terrific friend!! I don't know you but i did go to high school with Kevin and i am sorry that things are so bad for him and you. I had no idea that things were so touch and go for him. What i remember of Kevin is that he was one of the nice guys and i am sure you know they are hard to come by... He seems to have found an amazing women who loves him so very much!! How great is that?? He is lucky to have you and i hope he gets a new heart as soon as he can so he can have a very long life with you and your boys. Your post was truthful and touching and i am sure that the "visitors" you had that will read this will understand what you meant and that sometimes help is being left alone. God bless you, kevin and your family. I think you are AWESOME!!! Catherine Cassiere Pisani :)

  3. And you Kristy are one freaking fantastic friend too! I love that you wave your hands in the air while talking "jersey style"... xoxoxoxo

    Catherine, Thanks for the compliments. Kevin is stable now...but yes, back in October it WAS indeed critical. And I should correct you...I'm the lucky one to have him. :-) Thanks for reading... this blog has been so good for me to get my feelings out & leave them out there rather than keeping them inside.

  4. I can totally relate to everything you said and also the parts you didn't say I was in the same situation in dec09 only it was my 19 year old son on life support and we were wondering if we would ever hear his voice again.this came 3 years after he had a open brain surgery for a avm bleed out and we thought that was tough it turned out to be nothing compared to heart failure.Bryson has had his pump for 17 mo. now and is starting to have complications (peeing dark blackish blood)for a week and ended back in the hospital.After the docs torchered him for 4 he got bumped to the top of the transplant list thank we wait...........debbie.

  5. debbie, my husband & i saw on the lvad fb page about bryson this morning...and now just talked about how we think we saw you in clinic one day. it was you. i remember driving home being so upset, not even knowing you, about how young bryson is with the lvad. it totally crushed us. we were in total & complete shock. going through all this i thought the only thing worse than this being my husband would be if it was my own son. you must be an extremely strong woman. know that we are both sending you tons & tons of positive energy. would love to chat with you off board but this probably isn't a good time for you. when you're up to it, connect with me on fb..