A little George Straight 1982

Gotta get out of here, get it all off my mind...and like a memory from your grandpa's attic...a song comes slippin' through the radio static...changing my mood...get lost and get right with my soul.... 

Have you ever listened to a song and found yourself completely lost in the lyrics... transporting yourself to a different place in time.... Have you listened to a song and thought the words fit your life nearly perfect? I spend a lot of time listening to music...when it comes down to it,  more than I realized.... ten hours a week for my work commute, eight hours in the background at work each day, approximately four hours a week on the lawn mower, and then I always have something playing on the weekends while I am doing chores. This weekend while I was logging my lawn mower hours, I started to analyze my iPod play lists. Lets just say it is eclectic mix... But the one thing each song has in common, is how they fit into my life. Snippets of songs have told my story.. conveyed my feelings....marked my emotions...provided an escape....brought a smile to my lips... When I struggle with words to express my feelings or struggle to make sense of my life, I let the lyrics in my play list do the work....

 the hurt... the pain...

life ain't always what you think it ought to be.... ain't even gray but she buries her baby... the sharp knife of a short life.... I've had just enough time...

 Lying in my bed I hear the clock tick and think of you... Caught up up in circles...confusion is nothing new... After my picture fades and darkness has turned to gray....watching through windows you're wondering if I'm OK.....

Every time I think of you. I always catch my breath... And I'm still standing here...And you're miles away... And I am wondering why you left.... And there's a storm that's raging through my frozen heart tonight. ....

 the hidden reality....

she never slows down...she doesn't know why... but she knows that when shes all alone  feels like it it's all coming down... she won't turn around... the shadows are long and she fears  if she cries that first tear... the tears will not stop raining down... so stand in the rain.. stand your ground... stand up when it's all crashing down.. you stand through the pain... you won't drown...and one day what's lost will be found....you stand in the rain... she won't make a sound...alone in this fight with herself and the fears whispering if she stands she''ll fall down... she wants to be found... the only way out is through everything she's running from... wants to give up and lie down...so stand in the rain... stand your ground... stand up when it's all crashing down... 

People say that I am brave but I'm  not... truth is I'm barely hanging on.... 

anger... frustration....

what do you want... what do you want from me.... are you trying to bring back the tears or just a memory... you keep taking me back to where I have already been....what do you want from me... I get so tired of living like this...  to find the things to keep my mind off of you... what do you want me to say..

to find a release from reality... a release from the pain.... or to transport me to a time when I was carefree...

 progress.....

It's been a long road and a million tears. I'm moving slow but I'm moving on.... The sweetest memories still remain... time and fate can't be controlled... you play the hand that you're dealt and the dice that you rolled... and  who am I to question God anyway...well these days when I look back,  I know I am blessed to have been loved like that... I still miss him every day....with no regrets... and peace of mind... lived so much in so little time...I'm so glad, when he was here, he was mine....from the day we met... to the night he left... I loved him... with no regrets....

  hope...

send me away with the words of a love song....lord make me a rainbow I'll shine down on    my mother... she'll know I'm safe with you when she stands under my colors...

it's like a storm... that cuts a path... it breaks your will... it feels like that... you think you are lost... but you are not lost on your own... you're not alone... I will hold you tight and I won't let go... it hurts my heart to see you cry... i know its dark, this part of life... oh it finds us all...  we are too small to stop the rain, oh but when it rains.. I will stand by you, I will help you through when you have done all you can do and you can't cope... don't be afraid to fall... it won't get you down... you are gonna make it... I know you are gonna make it....

life ain't always beautiful... but it's a beautiful ride.... 

a bigger picture .....

but there's a greater story... written long before me... because he loves you like this... i will carry you while your heart beats here... long beyond the empty cradle through the coming years....i will carry you.... all my life... I will praise the One whose chosen me to carry you... such a short time, such a long road... all this madness but I know.. that the silence has brought me to his voice... 

an escape....

memory lane up in the headlights... has got me reminiscing all the good times...

          listening to old Alabama... driving through Tennessee... 

Turn the quiet up... turn the noise down... let this old world just spin around... i wanna feel it swing... i wanna feel it sway... put some feel good in my soul.... act like tomorrow is ten years away... kick back and let the feelings flow... 

My emotional play list will be an evolving process...  some days will be stuck on repeat... some days will rewind... and others will fast forward... but at the end of the day it will be an acoustic version of  me finding my balance and getting right with my soul....

How far will your ripple go?

Last week, we were invited by Midwest Transplant Network to participate in their yearly calendar. Each year they select 12 individuals from a pool of deceased donors, living donors, recipients and those on an organ waiting list. We were honored to be asked if Palmer could be featured. This involved going to Kansas City as a family for a photo session and filmed interview in a professional studio. I can not begin to describe the intimidation from the studio and the pure, raw nerves involved. Well you know me. If I am going to do something, I want to do it right. I left there feeling like I let Palmer down by doing a poor job sharing his story and how we came to our decision to donate. For as hard as it was emotionally, I wished I could have a do-over. For someone who has blogged her journey to anyone who would read it, I really came short with words. All I can say is that it was not eloquent and I am afraid I didn't make much sense. Combine the bright lights, camera, nerves and all the thoughts running through my head and I am afraid it equaled a mess. I know it was hard for Scott too. You have heard me talk about couples having to grieve separately and together. Well take two people who have not grieved together since their son's funeral, have a complete stranger ask some very personal questions and then record their every word and movement... I think you get my drift. Even though it was hard, I have no regrets. Even if our footage ends up on the cutting room floor, we made progress as a couple. So based on some questions they asked, I thought I would try a  'do-over'.....

My name is Jenny and this is my husband Scott. We are your average farm family living in north east Kansas.

We came in contact with Midwest Transplant Network while I was pregnant with our son, Palmer. At twenty weeks into the pregnancy, through a routine ultrasound, he was diagnosed with anencephaly. Anencephaly is a neural tube defect that is 'incompatible with life'. There was no guarantee how long he would survive... a few minutes, hours or days at most. After receiving his diagnosis we researched the possibility of  tissue donation. His organs were too delicate for harvest, but his heart valves were a possibility if he met certain criteria. Our experience with Midwest Transplant Network was absolutely wonderful. They fully explained the donation process and offered wonderful support. A caring and compassionate nature was our first and lasting impression.

In hindsight, our decision to donate was easy. I say this simply because it was always the right thing to do.  We are both registered donors. So really, why would we choose anything different for our children. But after you are given the news that your child will die, your thinking is not clear. The cliche 'our world came crashing down' becomes your reality. Simple tasks became unbearably hard. Our life seemed to come to a screeching halt. You question your strength and ability to continue a pregnancy that will ultimately end in death. But as you question your strength, you realize that you love this little being with all your heart and soul. Then you start to think about the other families who have been told that their child will die unless they receive valves. Each day, they watch their child slip away, fighting to live. This was our opportunity to turn our loss into someone else's hope. The days I wanted to lay in bed and ignore the world, I thought of these families and what donation would mean to them. Donation became my ray of light. It was my reason to get out of bed, put myself together and live my life for my child and the recipient family. Through donation I learned a new appreciation for celebrating the life of my child.

Each criteria milestone we met was a reason to celebrate. On the day of his delivery, the wild card was his weight. After he was born, the nurse reported his weight at 4 lbs 13 oz. I knew this would not make the cut and our nurse confirmed the news that he was rejected for donation. I was devastated. I remember looking up at Scott, watching him unwrap Palmer and listening to him say there had to be a mistake. He said he knew he weighed more based on his chest size and he demanded a reweigh. Scott was right. His weight was off by 3 ounces. Two families were gifted heart valves because of my husband. He often will say that I did all the hard work during the pregnancy. But I think those two families would agree, that his role that day was just as important as what I did the previous 9 months. That night, we were allowed 12 hours with Palmer before we had to give him up. We chose to give him to the harvest team a little over 4 hours after his heart stopped beating. We knew the sooner his valves were retrieved, the sooner a family would receive 'the call'.... the call that valves were available for their child.

Regardless of your situation or circumstances, consider donation. Talk about it with your loved ones and make your decision known. We all leave a ripple in life, reaching out and touching lives. Donation is a gift that leaves a ripple and touches more people than we really will ever know. Do your part and keep your ripple going.

Butterflies

This post is for my Aunt Laura and Aunt Kristy.... whether you realize it or not, you both push my writing out of my comfort zone and embrace what comes from my heart...I have been struggling for the right words for the last few hours... trying to find the right words to explain a topic that is taboo... but I guess I will stick with my 'open and honest' policy ....

During the time after Palmer's death and before his funeral, I found myself talking to him late at night. Unable to sleep and curled up with a stuffed giraffe, I would close my eyes and start talking. At first I would see small flashes of dim light. By the time I was done talking and saying what was on my mind and in my heart, the light would be strong, steady and bright. There was always a sense of peace after these conversations.

Since his funeral, I have been trying to juggle the pieces of my life. Trying to figure out how these pieces will fall back into place has been a challenge. Not only am I working through my grief, I am trying to help Spencer work through his. Between our grief,  my efforts to get Spencer settled in school and getting  my work schedule back on track, I lost my time with Palmer. The last few weeks, life in general was kinda rough. It was safe to say I was physically, mentally and emotionally spent. My heart ached and my arms felt empty. It was during my lowest moments that I realized these conversations filled a void in my life and they needed to start again.

There were no flashes of light this time. Rather, I started seeing butterflies.

At the mailbox. By the front door. Following the lawnmower. At the cemetery. Picking vegetables.  Every time I turned around I would see one perched watching me. I would like to say, that just because we live in the country, butterflies have not been a common sight. Actually, I could probably count on two hands the number of butterflies I have seen in the last two years. One night in particular was Spencer's first day of school. When I came home, there were two butterflies waiting by the front door. As I walked up the sidewalk they both swarmed at me and swirled around my head. They took turns resting on my shoulders, one on each side. They kept this up for a good 15 minutes until Scott got home. When he parked his truck, I could tell by the look on his face that he couldn't figure out why I was spinning in circles with an odd smile on my face. I explained to him the symbolism of butterflies. That some believe it is the transition between life and death, a sign from our loved ones that they are alright. It is also a sign of hope. He then asked me about the significance of dragonflies. He went on to explain that during the last week, he had a swarm of dragonflies riding along on the cab of the combine. For him, regular bugs are a given, dragonflies are not. My only thought was that Palmer sent him the manly version of a butterfly.

I thought more about the movements of the butterflies. It was almost like a kid who was really excited to show or tell something. I imagined this is probably how he would act bringing a new friend home. "Hey mom! Meet my new friend!" The trailing butterfly reminded me of Spencer and how he often follows me around wanting to help out or just curious as to what I am doing. Sort of like "Hey mom! What are you doing? Can I help?" It left my heart lighter and happier.

I have seen fewer butterflies since the bumps have evened out. Perhaps they will return when the next rough patch hits. Some may say the timing and actions were purely a coincidence. I prefer to see it as a reminder of a beautiful life.