Wednesday, November 23, 2011

Giving thanks....

Embrace life.

This time of year everyone remembers all that they are grateful for...their friends, their family, their health, their job, food on the table, know where I'm going with this. Giving thanks, being thankful, showing gratitude. 

Living post transplant for sure has given my little family of four a different perspective on life. Our little guys have said numerous times that they're thankful for "daddy's new heart." Ya know last year at this time they were thankful "to have daddy home with us." Amazing how much can happen in one year. 

Celebrate life.

In the fall of 1982 the movie E.T. was released in theaters. It was also fall of 1982 that my dear grandmother passed. The only grandmother I  knew because the other had passed years before I was even a twinkle in my parents eyes. I always remember her during my days here  and there... she's also one of the people that I would talk to during this past year. Her ears must be killing her. You're reading this hopefully not thinking I've lost my mind. When this entire journey started I had what I now refer to as my "band of dead relatives" that I would talk to. I'd beg them to please turn off whatever light was on so Kevin would turn around, walk back and wake up. Begged them to get off of whatever cloud they were floating on and  to go watch over Kevin every time he was in the OR. You all know how our story ends ... he did wake up and they looked over him during every surgery.  I'm so completely thankful for them.

Live each day to its fullest. Tomorrow is never a guarantee. Be thankful for what you have.

In no particular order, I'd like to share what I'm thankful for this year:

Our boys, aka my little monkeys.
Kevin. His love. His beating heart. The fighter & lover I know. 
Our families.
Our SoCal family.
The air that I breathe.
The roof over my head that no longer leaks.
Smiles. Hugs.
My job.
A little family on Facebook called LVAD Friends.
Steel Magnolias.
The doctors & nurses at Cedars Sinai Medical Center.
LAFD engine 72.
Everyone that works behind the scenes at Cedars Sinai Medical Center.
My band of dead relatives, SMART.
"Our horses that vomit blood."
Unexpected telephone calls that brighten my day.
Our friends, both near & far.
A healthy family.
My parents & Kevin's parents. Thankful that our boys get to know them the way we know them.
The teachers & Director of our boys preschool.

Thanksgiving. Thankful that as this holiday is approaching I'm finding me again. The me that enjoys cooking. Everything on our table this year will be like years past, made from scratch and made with love.

Our donor family. Whoever you are, wherever you are. Thank you for giving my husband a second chance at life. I am forever grateful. 

In closing I would just like to say....I'm thankful for every morning that my little family of four wakes up under the same roof.

"Learn from yesterday. Live for today. Hope for tomorrow."

Thursday, November 17, 2011

letting go & finding me

"You have come across mountains this last year and all of you have survived.....scarred (mentally & physically) but you all survived."

Since the news that Kevin's pheochromocytoma was benign...we've been enjoying every moment and every day like normal families do. It's almost as if we've picked up from where we left off a little over a year ago.
the family that ROCKS together
stays together!

With the exception of the impending surgery on Kevin's hand/arm, we are literally back to our usual shenanigans. If I work late he picks up the boys at preschool. We went pumpkin picking and got lost in a local corn maze, pure fun. Trick or treating was extra special this year since Daddy was with us. The usual burping & farting contests with Daddy. Wrestling with Daddy again. Sharing the parent load is for sure back to both of us. Kevin can help with bathing the boys. We can have dinner without Daddy having to get up to take medication. We can go out on date nights without a hospital mask. Sending Kevin to the grocery store for milk is something I can rely on again. All wonderful news.....

So why in the hell do I feel lost? Did someone fire me and I'm still sitting at my desk like an idiot?

If I'm being honest then I have to admit that I think I'm having trouble remembering me. The life of a caregiver always takes a back seat. And if that caregiver has kids, well then that back seat is further back.

If you think about what has literally happened in a year's time....It can be compared to that of what most couples experience during their 60's, 70's or 80's, right? I did everything for him. I bathed him, helped him get dressed, helped him learn how to live with one hand really... we learned together that living with an LVAD was in fact do-able. Medication management, chauffeur, doctor appointments, fighting Mr. Insurance (still not ready to talk about it), therapy (both physical & occupational), took on the weight of his emotional distress whenever needed, always smiling saying that it would all eventually be behind us. Now let's add on top of that our twin 4 yr old boys. I'm a mother too. Wait, correction... that's working mother. I had zero time for me. Yes, I was fine with it. I don't regret anything because there isn't anything I wouldn't do for Kevin, my children, my family, and friends included. I made certain that the three most important men in my life had what they needed... did I go without in the process? At times yes. I was OK but I'm now finding it hard to find me again.

Let me try and explain a little better.

We are back to normal again. There are no more life threatening situations at our front door (knock on wood) anymore. The survival mode that kicked in from October 7, 2010 has now turned off. I'm physically here but it's like sitting in an audience waiting for the show to start. Where the fuck am I?  Again, did someone fire me? Is this what empty nesters go through when their kids go off to college?

I sort of have so much free time for "me" that I don't know what to do with myself presents the issue I've been dealing with the past few weeks. Weird memory association. Flashbacks. I recently gave away all my clothes that smelled like the hospital. Things that family members used while they were here during the pillows, blankets, sheets, etc... it's all in the trash. I've gone as far as avoiding some of my twin mama friends because I couldn't bear to see their faces because I was having a horrible flashback that morning. Even certain teachers at our sons preschool give me flashbacks. My brother came to visit in I was dropping him at LAX I had a flashback of last year. Kevin's parents were just here...stayed with us for a few nights... same thing, bad memory association when I saw them. It happened practically every morning. Not their fault. Just bad timing maybe? I don't know. I need to let go and move forward. Blogging right now...typing it all out...crying in the process.... extremely cathartic.

the monks at the beach...
Is it possible I'm experiencing post traumatic stress syndrome almost a year later? Now that I have free time for my mind to wander I'm just now dealing with the actual emotion of what happened last year? This is the stuff the doctors don't tell you about. It's all very much about the patient because, well, let's be honest... he did die, come back to life, got new life, and technically he beat the focus absolutely should be on the patient. If you're a caregiver and you're reading this.... please take time for yourself. No matter how little of a time it is... no matter what it is... take time to blink, breathe, and realize what is going on. Seek help if need be. Everyone warned me to take time for myself but I went with my heart. I put Kevin first. He is, after all, the love of my life. He inspires me like no other. He rocks my world. I wouldn't have it any other way.

me & kev lost in the corn maze
with the boys
So how am I nowadays? I'm OK. I think "me" is around the corner. My boys are still the force behind my strength. They remind me every day how lucky I am and they remind me to enjoy the simple things in life. Personally, I'm seeking my own kind of therapy. It's at the gym. Core & cardio training to be exact. It's two hours where I get "me" time to focus on and think about just ME. Call me selfish if you want but let's be honest, I've got a younger heart to keep up with. This ass is for you KEVIN!