Time Marches On

I haven't posted here in a long while.  Unlike other friends, writing it all out doesn't always help my pain or my fears.  OR, it does, but I'm unable to really face them.  Plus, the only time I ever get to write is a work.  Not only is that not a therapeutic time, I'm supposed to be working.  ;)

We passed the anniversary of Michael's death and revival last Saturday.  I made it through the day, but just as I predicted, I wasn't handling it well. I'd pulled back from life a bit in the last few weeks.  I told myself, yesterday morning, that it was time for me to suck it up and get back to living again.  I openly posted on Facebook, about having pulled back, thinking that putting it out there would spur me into action.  Baby steps don't usually work for me.  Usually I have to just throw myself back into the ring of life.  That wasn't really the brightest choice this time.  I suffered 2 panic attacks at work, the last pretty severe, and another extremely severe attack at home.  The last attack at home left me sobbing and paralyzed on the floor, continuing a process I never let myself complete.  I never allowed myself to grieve.  That day in the ER, I was taken to a crisis room where I sat on the floor, crying and panicking.  Once I found out that Michael was still alive, I shut it down.  I pushed it down, because I had a job to do.  It was now my job to listen, learn, and advocate for him.  It was my job to make sure that, come hell or high water, he got to see our son graduate from high school.  I said to myself, "I'll be damned if my son is going to grow up without a father."  Looking back, I don't believe I would have done any of it differently.  I did want needed to be done.  I stepped up, I grew up, and I became the woman God made me to be.  However, that grief had to come out at some point.  That grieving woman who I left in the crisis room would no longer be pushed down and ignored.  I finished what I didn't allow myself to finish that day.  I cried, sobbed, and let all the grief, pain, and despair pour out of me. I didn't have any choice but to let her take over and continue grieving.

I'm better today.  Lighter.  The weight on my heart has lifted a bit.  We have come full circle and I am grateful for the year that we've had.  I know that this may not be the last time this happens, but at least I've started the grieving process again.  I'm also having to, once again, accept that this is our life now.  Getting a new heart will bring on a whole new set of problems...rejection, infection, and more.  I just have to take it as it comes and lean on God.  He is my source of strength.

For those of you who may stumble upon this blog, to all of you out there who are suffering quietly, who are being strong because you have no other choice, know that it will be ok.  YOU will be ok.  You will live. You will thrive. You will get through this.  I'll leave you with a few quotes/verses that get me through the hardest times.

"On this day God wants you to know...that it's OK.  Just rest for a moment.  It's OK>  Yes, things are crazy. Yes, the world is going nuts.  Yet, deep underneath the stormy waves, there in the core of your being, there is pure silence...pure love.  And it's just...OK. <3"  -given to me by a friend.  Unsure of the origin.

"I see...a girl who has won a battle.  A girl who appreciates those moments between maulings.  A girl who knows all too well the dangers and pain around her, but who has made a conscious and complete decision to be furiously happy in spite of it all."  -The Bloggess (I love this blogger!!)

My new favorite verse...
"No testing has overtaken you that is not common to everyone. God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.

— 1 Corinthians 10:13 (NRSV)

Thank you, Jesus, for bringing us through this life.  I am forever grateful for each and every moment.  

Love always,

Jamie

Welcome Back

Hello again!  I think I started this blog before I was really ready to share more about our new life and what we went through.  I got caught up in trying to tell our whole story and I just wasn't able to really go there at the time. I think I'm coming to terms with that and will at some point (when I can actually talked through our experience without breaking down) figure out how to make a quick link to it.  For now I'm going to actually use this as a place to work through my other feelings.  :)

I feel the need to talk about books.  I know it doesn't seem to have anything to do with LVADs, but they play a huge part in my life and they have been been pretty significant in our LVAD life this week.

As a kid, I HATED to read.  Did you have those readers that you'd bring home and you had to read the stories in them?  Then you'd get points or stickers for your progress through the semester??  I did.  I hated them.  It was like pulling teeth to get me to read through those things, yet my best friend could read through one entire book in a couple of evenings.  Oh how I envied her!!!  I wanted to be able to sit down and read for hours at a time, but it was such a chore for me.

I don't know when it happened, but somewhere in my early teens I put my nose in a book and I was changed.  I could read for hours on end, and finish a paperback in one sitting.  I went through books like water and my parents often complained about how quickly I was able to finish a book.  My Dad would give me his John Grisham books when he finished them and I would burn through them.  Finally he got frustrated and decided there was absolutely no way I could read that quickly and retain the information in the story.  He sat me down and actually quizzed me on the book we'd both read.  I smugly answered every question correctly and he had to admit that yes, I really am reading EVERYTHING.  :D

Books became a way for me to travel to new places, experience new feelings, and meet new people.  As I got older, I realized how much I could learn from books.  They could show me new viewpoints and teach me new things.  I would become so engrossed in a book, I couldn't hear anyone talking to me.  I remember reading a book about what life would be like after a nuclear bomb hit America.  I was so entrenched in the story, that when I got up to use the restroom, for a split second, I told myself there was no working toilet...just like in the book.

As I got older, I didn't have as much time to read, especially after having Tre, but I was always in the middle of a book.  If I wasn't, I was on the look out for a new one.  I will just about anything and will almost ALWAYS finish a book, even if I hate it.  My reading time became my "me time".  At time to get away and forget the real world, and my responsibilities for a while.

When Michael went into the hospital, I needed a way to cope.  Right or wrong, I dove into my books again.  I'm pretty sure I spend hundreds of dollars, during those 3 months, downloading book after book to my iPad. It's a good thing Michael didn't take over the finances until a lot later, and he never saw those charges.  LOL!

If I had a series I was going to read, I'd make sure I had the next book downloaded before I even finished the current book.  I was like a drug addict.  I couldn't stop myself.  I NEEDED to get away from the emotional roller coaster we were on. Without those books, I would have certainly had a breakdown.

Despite my love and need for books, when we came home, I stopped reading all together.  I couldn't read a single story. Not even a short story.  I would try to pick up a book, but nothing, not even my all time favorite book (Outlander) could hold my attention.  It was as if I had SO MUCH going on in my heart, I couldn't bring myself to invest in anything. Not even a fictional character.  For 3 months, my Kindle app stayed closed.

This week, for the very first time, I felt the "need" to read again.  I felt like I could take interest in a story again.  I cannot tell you how happy it makes me, to know I've been reunited with that love. I think it means that I'm finally, Finally, beginning to heal.  I've been carrying so much fear, anger, and uncertainty around in my heart.  I've had to give SO MUCH to everyone else, that I had nothing left for myself at the end of the day.  I don't know what triggered this change, but I feel like I've finally taken the first step back to normal.  Or LVAD normal anyway.  ;)

I still have a LONG way to go in my road to emotional recovery, but at least I can say that I've taken that first step.  Welcome back Jamie.  You've come a long damn way.  Thank God you made it!

Proud Mary

I really feel the need to talk about how proud I am of Michael today.

If you've read my intro, you know that we haven't been married very long.  Only five years, 4 1/2 of those years with a child, and 2 1/2 of those years with his health problems.  Ours had not been an easy road and there have been many times when our marriage has really suffered because of these things.  Let me also add that Michael was 37 when we met...very much a set in his ways bachelor.  Oh, and did I mention that we're both INCREDIBLY stubborn and set in our ways?

It's been a long time since Michael's really taken care of himself.  His diabetes went unchecked for a very long time, and it's hard for him to accept limitations on any part of his life.  Especially when those limitations are given to him by other people.  We have both struggled so much with the life changes we've needed to make and while we've been successful in some areas, we've failed in others.  We struggle daily with all of the changes, but we know that not only is it in our best interest, it's in our son's best interest.  We MUST teach him NOW to take care of his body and eat right.

Until recently, I've been working full time, helping out every night at our TKD school, and doing all the "mom" chores at home...cooking, cleaning, laundry, and all that good stuff.  I've been failing miserably all the "mom" chores, and Michael's health has suffered...until this week.

I'm not sure what has changed, but Michael has left me speechless this week and last week.  Instead of staying away from the gym when he's tired, he's been going.  Instead of eating out or expecting me to cook, he's been cooking.  Yesterday I came home from work and I was blown away.  The washer and dryer were running, the dishwasher was running, the sink was void of ALL dirty dishes, the laundry was folded, and dinner was in the slow cooker.  Y'all, I could have been knocked over with a feather.  I didn't even know what to do with myself. And this isn't the first time.  Last week he cleared off most of the pool table (which is a HUGE catch all for our junk).

I cannot begin to describe the happiness and lightness in my heart. Instead of feeling weighed down with all the things that need to be done, I feel like I can play a board game with my son, and not feel guilty.  I feel like I can sit and watch a TV show with my husband, and not feel guilty.  Sure, there's still cleaning and organizing  that I need to do, but I don't feel like the weight of the world is on my shoulders.

So Michael, if I do end up sharing this with you, I want you to know how proud I am of you.  I am so VERY lucky that you are my husband.  You are taking a stand against these heart limitations, and saying, "I can DO this."  I have hope now, that you will be with us for a long time, and that gives me so much joy.  No one wants to lose their spouse. Ever. But the thought of losing you before you get to see our son grow into a man breaks my heart.  He needs you and so do I.   Thank you for setting an example for our little family.  I love you so VERY much.

Thoratec and Seton Hosptial Dinner 5/5/2011

Ok Jenny, I'm sitting down and making the time to get this out!  LOL!  This is a VERY rough draft, just getting my thoughts out there, so bear with me.  :)

Last Thursday was such a wonderful day for Michael and I!!  The physician's assistant, Ellen, in our local cardiologists office had set up a dinner with Thoratec and Seton Hospital, the LVAD hospital in Austin, Texas.  I've known about this dinner almost since Michael got his LVAD, and I've been eagerly awaiting it all this time.  I was told that we would be meeting some other LVAD families in the area, and I just cannot begin to explain how important it is to have an LVAD support system.  The people I have met on Facebook have already begun to be family to me.  Two ladies specifically have touched me, but I'll tell their stories later.

So we set up a babysitter, got our fancy duds on, and headed out to Christopher's, a local gourmet restaurant.  When we got there, it was PACKED.  We couldn't move, couldn't hear anyone, and the table made for us was taken over by other attendees.  Then we met Michelle, the sweetest person and the Thoratec rep for Houston.  She was stressed to the max and so upset that things were not going as smoothly as possible; however, she introduced us to Don and Anne Seaman and our night was complete!!!

Anne is 69 and has had her LVAD since October 2010.  She and Don have been married for 46 years and they are the most precious couple!  We exchanged stories, talked about dressings, compared hospitals, and all the while I kept thinking to myself, "Now WHERE is her controller?  She doesn't have a bag, she doesn't have a belt...I know it's there somewhere..."   Michael was equally confused and finally asked her where she kept all her hardware.  By that time my eagle eyes had spotted her controller and I thought to myself, "GENIUS!!"   She said, "Well you know, when I was still in the hospital, I was talking with the LVAD coordinator, Chris, and told him I just wasn't going to carry all of this stuff around with that darn Go Gear.  It just doesn't work for me.  So I got myself a yard of muslin, sewed up a vest with pockets, and honey, I am a 40D for the first time EVER!"    HA!!  Didn't I tell you she is adorable??  Her controller sits right across her chest, and if I weren't looking for it, I never would have known that it wasn't her own "assests".

Once Michelle got everyone at their correct tables and correct rooms, we ordered and then spoke to some undergraduate students who were looking into being P.A.'s (physician assistants).  We got to tell them a little bit of our story, answer their questions, and show them how an LVAD works.  And then the real test started. Michelle had us stand in front of all the P.A.'s and cardiologists, to tell our stories and to answer their questions.  I have to say, I was so nervous.  Here I was in front of these amazingly intelligent people, and they wanted to learn from me. ME!  Then I realized, I got this.  As a caretaker, I know more about the LVAD than most doctors in this world, and definitely more than the doctors in that room.  I cannot tell you how empowering it was to come to that realization.  It was then I knew that I would do whatever it takes to educate and spread the word about LVADs.  This device saved our family, and the more medical professionals that know about it, the more people that can be saved.

After the dinner I had a chance to introduce myself to Dr. Mays, the cardiologist who inserted Michael's balloon pump after he came into the ER and coded.  She is a pretty intimidating woman, because she is SO intelligent, but she was so gracious.  I was able to thank her for saving my husband, and she told me she remembered that day very clearly.  We talked for a while about our journey and she was incredibly encouraging.  We are so blessed that she was available to operate on Michael that day.  Thank you Dr. Mays!!!

By this time, our coach would soon turn into a pumpkin, and I we began to say our goodbyes.  When we spoke to Michelle, she asked if we would be available to help educate the medical community in the future, and we said, "ABSOLUTELY!!!"  Michael and I are so excited to share our story, and hopefully give support to other families who will have to make the same decisions we made.

We had a wonderful night, and while we only got to meet one other LVAD patient, we did find out that there are 3 other LVADers in the area and we hope to meet them soon!!

What is an LVAD??

An LVAD, for those of you who have somehow stumbled onto this blog, is a Left Ventricular Assist Device.  In layman's terms, it helps the left side of the heart pump blood to the rest of the body, when the heart is just NOT strong enough to do it alone. 

Here's a link from the American Heart Association.  http://www.heart.org/HEARTORG/Conditions/HeartFailure/PreventionTreatmentofHeartFailure/Implantable-Medical-Devices-for-Heart-Failure_UCM_306354_Article.jsp

Check back for links and maybe more descriptions.  

In The Beginning....

Kind of blurry, but here we are!

...God created our special little family.  Michael and I have been married for 5 years, which is a long time only in dog years.  We met on the internet before it was cool, and have loved each other from almost the first instant.  Together we have created a life, a business, an extended family, and our best accomplishment, our 4 year old son Tre.  Tre is...Tre is everything.  He is our life, our love, and sometimes even the glue that holds us together.

For now, this blog is my way of keeping my best and closest friends in the know, and my way of working through the roller coaster of our life.  I will tell our story to the best of my ability, but it's not going to be easy.  Please bear with me.  I may write really LONG posts, I may abandon a post mid thought, or I may just copy and paste an email that I sent to our friends and family at the time, with an "inside look" at the end.  And if I'm lucky, (or maybe if HE is lucky), I'll get Michael to post some thoughts about our journey.


My goal for this blog is to eventually be a tool and beacon for other LVAD families, who are just starting their LVAD journey.  Even if I help only ONE person, I know that all my blood, sweat, and tears will be worth it.

So here we go friends...Welcome to our LIFE.