Mad Crazy Love

By sharon on Dec 6, 2008 (Yep, an oldie that's getting assimilated into this blog! My boys are 23 and 25 now, but the sentiments in this blog are ageless!)

My journaling seems to have no rhyme or reason in its timing. Sometimes weekly, sometimes twice a week, sometimes every few weeks. Maybe soon it will be once a month, or twice a day! I don’t know! But for now, it’s just whenever I need to write. For all of you who so kindly “listen” and comment on my journey, I want you to know how much this means to me. This is my therapy, my coping mechanism, and sometimes my lifeline! Thank you!

My boys are 22 and 24 years old now. When I moved into my new house in October, they moved in too! It just happened to be a time in all of our lives that we were able to make that move together. Coincidence? Hardly. I don’t even believe in coincidences anymore. I’m far more inclined to believe that God has a hand in every little tiny thing that happens in my life.

In the beginning of the house building stages, I had talked to Aaron, my oldest, about moving in with my grandson Noah. We decided to turn the basement into an apartment for them, and they would just rent it from me. It was a wonderful idea, and still is. I’m so happy that we did it. Chris, my youngest, happened to separate from his wife about a month or so before the house was done, and I didn’t have another apartment for rent, but I did have a large bedroom. So after a few negotiations, he was in too.

It may be a little uncommon for kids their age to be so willing to move home with mom. I’m not sure. But God has certainly blessed me with boys that love their momma. And I can’t begin to thank Him enough at this point in my life to have that kind of relationship with them, and to have their willingness for them to be here with me when I need them so much. The truth is, I didn’t even realize how much I did need them. And it’s not just for doing the things I can’t do either. In fact, that’s a very small part of it. I want to share with you a tiny little thing that might describe the real reason that I need them so much now.

This morning, I could hear them both downstairs puttering around and getting ready for work. This in itself always makes me smile. Even if I don’t see them much in a day, just knowing they’re around makes me so happy. Anyway, this morning … I hear them getting ready to go, and soon I hear Aaron say “Hey, I love you brother” and a few seconds after.. “I love you too brother” and then “will you start my truck?” and “yeah, I’ll start it. I’m on my way out now”.

This may seem like nothing to all of you. But to me, while it's nothing new, they have been close like this forever, it was huge. But it's worth telling you about it, because it reminded me of something.

Back when I still thought I had cancer and was going to be dead in less than 200 days, it actually crossed my mind that I would have nothing to leave my boys. I don’t know why I was so worried about having something physical or monetary to give them, but it was something I couldn’t help but think about for awhile. This morning, I realized something very important, and I’m bawling my eyes out as I type this. I have given those two boys everything they need for when I’m gone. They know the most important thing there is to know.. How to love each other. That’s all they need, because their love for each other, and their love for me is enough to build on. It’s the strong kind of love that you need to learn to love everything else that’s important. They both have sons of their own now, and I know that their love for their own children is a result of loving each other first. I don't take full credit for their ability to love. My sons have had the best teachers in the world! Their grandparents, their aunts and uncles, their extended family, and their father. But I WILL take credit for a huge part of it. I'm selfish like that!

Today was important because I needed to be reminded that they don’t wait for special occasions to say “I love you” and to do things for each other. Something about knowing this is so comforting for me.

Today, no matter how badly I hurt, and no matter how stinkin hard it is to walk down the stairs the first time, I will hardly even notice! God has reminded me of my own importance yet again, and if He's not careful, I'm going to get a big head! These are the things that keep me going. These are the things that make me strong.

Today I’m thanking God for reminding me of what I DO have to give. For what I’ve already been given too. I am so blessed! I am, indeed, the luckiest person on the face of this earth.

Soul

I dreamed I could fly again.  
I'm never sad when I wake up from those dreams.. it's more like I am empowered for awhile.  I know, it's really cliche when I think about it, but it's true.  I have the dream, and then for days I find myself thinking about it.  Remembering how easily I could thrust myself forwards and upwards and then I'd be flying... like peter pan.. or tinkerbell, or just some beautiful butterfly. In the dreams I can both see myself fly, and feel myself fly. 

Today it occurred to me that the flying dreams seem to come along when I begin to feel a little closed in, as if to remind myself that I am as free as I want to be, as unencumbered as I make myself.  I think my dreams come from my soul.  

I know that my soul travels quite often as my body sleeps.  It comes back to me after having spent time with those I love both here and on the other side, and often I feel renewed, and comforted, and full upon its return. Sometimes I feel my body jolt in the night and when I do it wakes me just enough to realize that my soul has returned to my body. It always makes me smile when I feel that jolt.. I always know that something beautiful has just happened and I easily drift back to sleep knowing that nothing can ever really separate me from the people I love.  Not time, not distance, not even death.  

Tell me what you know about your soul...



.

Normal revisited

One of those journals from last spring.. it feels appropriate today.  Enjoy!

It occurred to me that for far too many years, I took feeling normal for granted. I never gave a second thought to how it might be to feel anything but normal. Hell, I never gave it a FIRST thought! I think as humans, we just naturally take a lot for granted. We go through life living an ordinary existence. We fall into routines that feel comfortable, and right, and it is enough. And then, for some of us, something life altering happens, and nothing is normal, at least for a little while.. and if we are really, really lucky, nothing is really normal ever again. Lucky? You ask. Yes! Lucky! I've learned that if I had stayed in that *normal* place in my life, never gotten sick, or experienced the things that I have because of that sickness, there are many things that I wouldn't know now.


I wouldn't know what it was like to have to sit down and tell my sons that my most recent tests were back, and not so good. Not a peachy day for sure, but what happened after I told them, is something that I wouldn't have otherwise got to experience. It took place in those moments, but it is still in existence to this very day. The day that you realize that you may not have much more time with the people you love, is the day that everything changes. EVERYTHING! Even if you think you had the strongest love on the face of the earth for your children, and that you couldn't possibly feel that love any bigger, or any more fully.. you will find out that you were wrong.


You will never hear certain things in the same way again.. for example "My mom/dad/brother/sister/aunt/cousin/ has cancer"
Your gut ties up in knots for them. You've been there, in that spot, that scary, very un-normal place, and now, you don't just hear those words, you feel that pain, you know that terror, and when you tell them you're sorry, they know that you understand. Really understand, and your understanding becomes a gift.


You will never see certain things in the same way again either.. When my second grandson was born in the midst of all of that chaos, I held him, and I didn't know if I would be here to see him take his first steps, or to know him and watch him grow. It made me very sad, but it made me see him differently too. I appreciated every moment spent with him in my arms.. every breath he took, every baby noise that came out of his tiny little body.. I could see not only the child, but the absolute miracle that he was.
When my oldest grandson came to see his new little cousin, and I saw him for the first time in a few weeks, my heart broke into a million little pieces hoping that I had or could make enough of an impact on his tiny life so that he would always remember me.


Suddenly, it became important to make a difference in the lives of the people I loved.. It became a driving force. Other than my grandsons who are so young, I wasn't afraid of not being remembered. But I very quickly realized that there was still so much that my family needed to know about how I loved them. The kind of things that I knew I couldn't just tell them. The kind of things that I had to show them.


Another thing that happened, is that I completely lost my tolerance for people who want to spend their time playing games, creating ridiculous unnecessary drama. Especially if those people were connected to my family in any way shape or form. It's part of that "Life is TOO short" thing. When faced with the possible shortening of your own life, you also gain a little insight into the lives of the people you love. It becomes very difficult to watch them waste their time with things that clearly won't change. I think it also has to do with wanting to make sure they aren't stuck in some kind of unhappiness when you might not be here to help them through it! And yes, I know that it's ridiculous to think you can protect those you love from such *normal* circumstances, but it doesn't stop you from wanting to get not only YOUR life in order, but help them to get theirs there too.


Things become funnier, and you become more willing to look ridiculous while laughing at them until you cry or hurt!!
Time becomes more precious, and you become less willing to allow *normal life* to get in the way of spending your time doing worthwhile things.
Worthwhile things, take on a different meaning too. Worthwhile suddenly has less to do with what you gain financially, or materially, and far more to do with how full you can keep your spiritual bucket!


You learn that relying on God is the strongest thing you can do, and not the weakest. You become more willing to listen in order to hear His voice, and more willing to be still in order to feel his touch.


And somehow your life becomes something that is not really your own.. you begin to see the value in sharing it completely.. spreading it as far as you can among the people you love.. gathering along the way some important things to take with you.. and just hoping like hell that you can leave important things behind. Not because you are concerned that your life wasn't worth remembering, but because you want the people you love to experience the kind of life that can only come along when *normal* is just a word in the dictionary!


Wishing you all a fantastic journey away from *normal* in your life! I know some of you are already on that journey with me, or in your own lives, but some have not yet begun. You can be absolutely certain, that whatever has to happen in your life to kick start that journey, it will be absolutely worth it.

Heart

I doubt I will ever think of my heart in the same way again since last Tuesday!

I now am the proud, happy owner of a mechanical device in my body called a defibrillator, and the little piece of equipment (who I've named Thumper) is here to stand guard over my heart and it's quirky, speeding ventricular tachycardia. Thumper is a pocket watch sized computerized, peace of mind packed bit of goodness and I am yet again blessed beyond measure. 

The implantation of Thumper went exactly as expected.  There were no surprises, and no abnormalities, and I was in the hospital exactly as long as they said I would be.  I will have a scar on my chest that looks to be about 2 1/2 -3 inches long, and it doesn't bother me in the least.  In fact, seeing that scar, and knowing what lies just beneath it gives me comfort that I can't begin to explain.  

As I was getting ready to leave University hospital Wednesday afternoon, I sat downstairs on a couch while dad went to get the car from the valet, and mom went to fill my prescriptions at the hospital pharmacy.  A lady came walking around with a coffee cart, offering hot coffee to those who were waiting for family members, or people who were just kind of wandering around watching it snow outside.  As she got closer to me I noticed a young man heading towards her to get a cup of java! He was pulling around a IV pole with 5 or 6 different bags of "stuff" being intravenously pumped into his body.  He was so glad to get that coffee that I jokingly said "Hey.. you should see if they can just pour coffee in one of those bags!"  Thankfully the young man saw the humor in my comment and he laughed and struck up a conversation.  

I never did learn his name, and he didn't learn mine.. but our conversation was as comfortable as if we'd been friends for our entire lives.  I learned that he was on a waiting list to get on the waiting list for a lung transplant.  Can you imagine?? A list to get on a list??  I told him "Dude, that sucks. I'm so sorry" and he said "Oh don't be... I'm at peace with whatever happens"  and looking at him, I knew that it was true.  He talked about how blessed he was to have his family's support, something that I could relate to without question.  He asked me about me, and what I was there for.. and we talked about Sarcoidosis a little bit, and we also learned that we were both at University hospital for procedures, but that our main hospital was National Jewish.  And then he said.. "Hey! We have something else in common.. our disease names rhyme!"  And we laughed so hard at that... he has cystic fibrosis.. I have sarcoidosis.. and I doubt any of you are laughing right now, but to us it was so goofy and so funny and when dad got there with the car at the same time mom got there with the prescriptions, I felt that I had been given twenty minutes of time with an angel from heaven. 

God did that. He gave me Thumper.. to take care of my heart physically, and he gave me time with that angel to take care of my heart spiritually.  He gave me heart, for my heart... just when he knew I would need it to get by.  I will never forget that angel, and that conversation.. I don't know that I will ever see him again, but he was a gift that I am so grateful to have unwrapped.  Do you get sick and tired of hearing about how blessed I am?  Because I never get sick of telling you all.. I am BLESSED so hugely that there just aren't enough words in all of the thesauruses and dictionaries in the world to make sense of it. 

I am one loved girl!

Friday's Five Questions (Thanks Scented!)

Playing Friday's Five Blog game with my friend Scented.
The way it works:
Copy and paste the five questions to your blog along with the answers if you'd like to share!


Here's mine:

THE QUESTIONS:

1) Do you make New Year's resolutions? Why or why not.

2) What were you doing at midnight?

3) What's your favorite New Year's Eve memory?

4) Do you have any New Year's Day rituals?

5) What is your New Year's wish?

 

 

MY ANSWERS:

 

1) Do you make New Year's resolutions? Why or why not.

I have made many new year's resolutions in the past, but for probably more than ten years now I haven't done it.  I'm not a resolution keeper.  This year though, I resolved to blog more.. perhaps it's one I can keep!




2) What were you doing at midnight?

Confined to the loft, still awake but fading very quickly! The boys came upstairs to say Happy New Year, and we chatted awhile, I'm pretty sure I was asleep by 12:30!

3) What's your favorite New Year's Eve memory?

I honestly can't think of one that stands out as a favorite! Blah, I know!  

4) Do you have any New Year's Day rituals?

 

Nope.  My birth mother goes somewhere and eats black eyed peas.. I found this out probably 7 or 8 years ago.  When I was growing up there were no set in stone traditions, and I haven't made any for my family either. 

5) What is your New Year's wish?

 

I wish for excellent health, tons of love and a keen awareness of all blessings bestowed upon each of my friends, family members and myself for the entirety of 2010!  

BRING IT ON 2010!

Out with the old...

Well as of last night, 2009 is going out with a bang!  Not the kind of bang one might think of as an "exclamation point" to punctuate the year, but more like a thundering voice from somewhere up above saying "HOLD UP KIDDO, YOU STILL HAVE SOMETHING TO LEARN!" 


I got a long awaited phone call last evening with a message that I could have waited much longer to hear. My cardiologist made the phone call personally.  That got the hair on the back of my neck to stand straight up and fast!  He told me that the holter monitor he had me wear for 24 hours 2 weeks ago showed that my heart had shown episodes of V-tach (Ventricular Tachycardia).  He told me in no uncertain terms that he feels it's now time to get the AICD (defibrillator) in and as soon as possible.  So.. after spending all afternoon on the phone between National Jewish hospital and University hospital in Denver my AICD implant is happening Tuesday January 5th.  All things considered, this is a very good way to start the new year.  Peace of mind. There really is no price you can put on that is there? A defibrillator can save my life, and that's how I chose to look at it, but to say that I'm not scared right now would be a big, fat, lie! 


I'm not sure what lesson I have to learn from all of this yet.  But I do know there is something.  There always is.  I also received a phone call from my main Sarcoidosis doctor today.  She told me that the tests I had 2 weeks ago are showing that there is no improvement in the sarcoid from six months ago.  She started to tell me that I needed to up my methotrexate now, but she hadn't heard the big bang news yet, so she ended up telling me to "scratch that" and that she would get back to me next week after the defibrillator goes in.  So.... that's the report I waited so long to hear. (Two weeks is loooong when you're me!) I honestly believed that because the results took so long that "no news is good news" but that is NOT the case people.  Don't believe it when someone tries to tell you that!!


There's still hope.  Lots of it. The sarcoid isn't getting worse. It's just not responding well to the current treatment. If it weren't wreaking havoc on my heart it would be tempting to just live with it but that's not smart either considering that the longer the inflammation is present, the more damage is being done to the organs that host it.  Anywhooo..


I promised my cardiologist that I would take it easy and stay low key until Tuesday.  I have been confined to the loft by my kids!! The upside of that is that they have to wait on me hand and foot.  (I'm a pretty low maintenance prisoner though!) and the downside is that there will be no big New Year's Eve party here tonight as we had originally planned.  That's okay with me though.. I'm scared shitless to pretty much do anything right now.  I promised Dr. Buckner that I would not drive alone and that I would have someone near me until I get there.  So.... NYE at my house will be spent up here in the loft.. I'm pretty sure we have some champagne, and a few board games to ring in 2010.  Maybe even a few episodes of The Big Bang Theory season 2.  Seems appropriate doesn't it?

On Love

(Revisiting a few of my blogs from last year.. I was going to import them all to this blog spot, but decided that only a few will make it.. and I will interject them sporadically!  So.. here's the first of those oldies.. on love!)

I think it was March. But it might have been another month. The past year went by in such a blur in some spots, that I can’t quite remember those details.

Whatever month it was doesn’t really matter I guess. I was sitting in a waiting room at my doctor’s office. It was my first time there. The doctor was an oncologist. A cancer doctor. I was there to talk about having a biopsy done. I had been diagnosed with metastatic cancer. The doctor’s in Denver had told me to just go ahead and go home. There was nothing more they could do for me there. I needed to go home, have chemo and radiation, neither of which would cure me. Both might possibly extend my life. Or lack of life. Whichever way you chose to look at it I guess. But for some reason, I decided I should know exactly what to call this cancer. The Denver doctor said it was everywhere. They thought perhaps it was pancreatic since that’s where the largest tumor was. So.. Here I was. Sitting. Waiting. Thinking. And the doctor walks in and the very first thing he says to me is: “So, why do you want to have a biopsy? You already know you have cancer!” And I said, “Well, because I want to know what kind of cancer I have for sure, I want to know what to call it.”

We talked some more, and during the course of our conversation, I told him that I really wanted to try to treat the cancer naturally. I really was afraid to have chemo and radiation. I felt that it would kill whatever good cells I may have left, and besides, the naturopath that I had talked to swore that he could have me cleaned up in 200 days. So, I told the new cancer doctor this. He looked me straight in the eye, put his hand on my shoulder and said “Honey, you do not have 200 days.”

That was then. This is now. We all know now that by some miracle, I don’t have cancer. I have Sarcoidosis. But for some unknown reason, God does not want me to forget the way it started. He wants me to remember every detail of those days. Being diagnosed, treatment options and talks, all of it. He wants me to never forget what it felt like thinking that I had less than 200 days to live. I dreamt about it this afternoon, I dreamt about it last night. It’s been on my mind all day. It still makes me cry. It still makes me feel raw and unprotected sometimes. It still gets to me. Perhaps God wants me to know how that felt so that I can help someone else. Maybe He wants me to be able to genuinely say “I know just how you feel”. Or maybe he just wants me to appreciate what I have, but I think mostly, God wanted me to understand that life is short!

He wanted me to look at my parents and think “They are not forever, love them as such” He wanted me to look at my brother and sister and think “They are not forever, tell them how much you love them.” He wanted me to look at my children and know that love is the best I have to offer them. And he wanted me to look at my friends and feel the same. And more than feeling, He wants me to let them know. So, I’ve been trying to do that. I’ve been trying to live my life as though I really do have less than 200 days. It’s not as easy as one might think when you have a hard time crawling out of bed in the morning!! But it’s easier knowing that you’re doing everything you can to make love a priority in your life.

Making love a priority has had it’s ups and downs. Mostly ups, but when you try to love someone who doesn’t want to be loved, it’s difficult. But I have learned something there too. I can still love someone who doesn’t want me to love them. I can love them on their terms and in my own terms too. There is someone in my life who refuses to let my love affect her. Oh it makes me so mad sometimes. But I know she wants to love.. I know she wants to feel my love too. I don’t know why she can’t. I hate that it makes me mad too, but I am human. So, I pray for her. I love her anyway. I get snarky about her sometimes, and it does me no good. So.. I remember, life is too short to let someone’s lack of ability to love affect the love I have for them. And I go on.

For me, getting sick has been a driving force in my life. A turning point and a library of lessons that I’m learning as I go. The ability to share them has been healing for me in many ways, and I thank each of you who read these journals for that. The people I love and the way that I love them makes me the person who I am. I am so blessed!