The Dash

I read of a man who stood to speak at the funeral of a friend
He referred to the dates on her tombstone from the beginning to the end.
He noted that first came the date of her birth and spoke of the following date with tears,
But he said what mattered most of all was the dash between those years.

For that dash represents all the time that she spent alive on earth...
And now only those who loved her know what that little line is worth.
For it matters not, how much we own; the cars...the house....the cash
What matters is how we live and love and how we spend our dash.

So think about this long and hard...are there things you'd like to change?
For you never know how much time is left (you could be at "dash mid-range")

If you could just slow down enough to consider what's true and real,
And always try to understand the way other people feel.
And be less quick to anger,and show appreciation more,
And love the people in our lives like we've never loved before.

If we treat each other with respect and more often wear a smile..
Remembering that this special dash might only last a little while.
So, when your eulogy's being read with your life's actions to rehash...
Would you be proud of the things they say about how you spent your dash???

Linda Ellis

Attitude toward death

Live your life that the fear of death
can never enter your heart.
Trouble no one about his religion.
Respect others in their views
and demand that they respect yours.
Love your life, perfect your life,
beautify all things in your life.
Seek to make your life long
and of service to your people.
Prepare a noble death song for the day
when you go over the great divide.
Always give a word or sign of salute when meeting
or passing a friend, or even a stranger, if in a lonely place.
Show respect to all people, but grovel to none.
When you rise in the morning, give thanks for the light,
for your life, for your strength.
Give thanks for your food and for the joy of living.
If you see no reason to give thanks,
the fault lies in yourself.
Touch not the poisonous firewater that makes wise ones turn to fools
and robs the spirit of its vision.
When your time comes to die, be not like those
whose hearts are filled with fear of death,
so that when their time comes they weep and pray
for a little more time to live their lives over again
in a different way.
Sing your death song, and die like a hero going home. 

 The Teaching of Tecumseh

Awe

Artwork

                                         Libby loved coloring.

Picture

A picture that made me smile today :)

Awareness

This is a hard post but if it moves even one person then it needs to be said. Having a child with lung disease and absolutely no immune system was the hardest part of Libs fight. Heart surgery never kept Liberty down but lung disease did at times and that is why I put my heart into Cystic Fibrosis Awareness.

When Liberty was a baby we were told that her lung disease would take her away from us not her heart defect. I cannot even begin to imagine what it would feel like to never catch your breath. To feel every second of every day as if you were only breathing through a tiny straw. I may not be able to imagine it but I do know what it is like to watch someone you love go through it. I often talk about our happy times, which were many more than the hard times, but the fact is there is another side until a cure is found. I watched my daughter struggle for air many times. Her skin black and swollen, wheezing, gasping, curled up in a ball in my lap. Her staying up three days straight because her oxygen saturation is 60% and the headaches kept her up. Hours of pounding on her back and lungs with percussors, breathing treatments that scared her. New IV's every day, needles bending and breaking off as they hit her tiny bones. Living in hospital beds so long she would lose the muscle strength to walk. Yes Libby never felt sorry for herself, and yes she smiled through most of it, but there are a lot of things behind this curtain that a lot of people do not even know exists but we need a cure. We need people to see our stories. We need people who have not seen it first hand to join those of us who have in supporting research. There is so much one can do to help. If you go to www.cff.org you will find a tab at the top right labeled Get Involved! I ask that in Libs honor you do at least one thing.  It could be to spread awareness for lung disease by word of mouth or wear a cystic fibrosis wrist band, walk in Great Strides or Cycle for Life, donate money or sign up for organ donation, nothing is too small. One day we can make CF stand for CURE FOUND.
 

                         

Organ Donation Awareness Month

The facts:
- 110,586 people are waiting for an Organ.
- 18 people will die per day waiting for an Organ.
- 1 Organ donor can save 8 lives.

My personal feelings on this are Live Life then Give Life. Be someones Miracle.

My personal story of Libby being a donor.

 Of course I had always felt being an Organ Donor is a MUST. I never had a second thought about it for Libby & myself. Then the moment came when Libby passed. Extreme shock and sadness hits you. Your own heart feels like it was just ripped out. You can barely think, speak or feel. Then almost immediately the question came, "Will you donate your daughters organs?". I felt mad at first, how dare someone interrupt the first few moments of my mourning time and I thought can't they wait. Then it all came back to me, they are asking if they can have them this soon because they have to. They aren't going to stay fresh forever, and the people needing organs may only have a few moments of life themselves. All those feelings and thoughts went through my body within 60 seconds. I felt horrible about those first feelings I had, that's so not me, but in the moment I had so many feelings going through my mind/heart that I became confused.... Whether your child is sick or perfectly healthy I think you need to have a set plan in your mind. In the moment it is hard to think about decisions that fast, having a plan is crucial. Even for yourself, make sure your loved ones know your choice and make it official www.organdonor.gov/become.asp . Libbys eyes and skin were the only things that were in good enough shape to be donated, and we signed off on it. Later we found out because of her fever they actually couldn't be donated. I believe your childs spirit goes up to Heaven and joins God and that they do not need their broken bodies anymore, so the fact that you can save 8 childrens lives is nothing short of AMAZING.

~ Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not. ~ Dr. Seuss

 

We love you Kate!!

Baby Libs

Alive

I dreamt of Libby last night. I was at the hospital. She was laying on a hospital bed. Nurses were telling me she had passed away. Someone I couldn't see started talking to me a few minutes later. The person told me "they may have said she died but she is very much alive". The voice told me to feel her beating heart. I pressed my hand against her little chest and I could feel a slow normal beat. Then she sat up giggling because my hand had tickled her. The voice told us go to the transition room. Libby jumped down off the bed and darted into a big room. Libby started running around playing. I started looking around for her oxygen. When I couldn't find it I ran to listen to her breathing. She now was riding a tricycle and wasn't blue or out of breath. I do not remember how the dream ended but maybe that is for the best so I can have the picture of her playing happily left in my mind. I feel like these dreams are special notes from God.

Libby Lessons

Today as we were crossing the Richmond bridge Mike said "Oh no this is the bridge you hate". It took me a minute to think back and remember all the times I had closed my eyes, hands clenched, labored breathing, in complete fear. My fear of water always took over when I could see it through the cracks on the roadway. Today not one ounce of fear. I do not fear death the least bit. In fact one of my goals is to make it to Heaven. Of course I do not want to die, but I am no longer afraid. Libby taught me that there can be peace in death. That if I walk around worrying about this or that I really am not living at all. All the things that use to make me second guess I am now doing. All my fears were silly compared to the big plan of things. It's amazing how much Libby taught me. I think I'm pretty lucky for all the Libby Lessons I got :)

For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish but have eternal life. John 3:16

A personal Journey

A year ago, my daughter (out of character) would crawl into my bed and hold me tight every night for a week. The morning of surgery I quickly put purple fleece pants under her pretty pink princess night gown, slipped on comfy Oregon Duck slippers. Then we were ready to make our way to the hospital. To hand our baby to strangers, praying they could fix her little body so that it would be strong and match her spirit. In the tiny waiting room Libby clung to me, her head nestled tight against my chest. I kissed her goodbye praying that I would see her again. I barely made it to the waiting room before I fell into a heap throwing up. Sicker than I have ever been. Those were the last minutes I had with my true Libs. The funny, loving, courageous girl who made everyday the best of my life.

I held true to my promise to her, to do everything in my power to make her happy and make every minute with her count. To take care of her every single need. To never lose my hope and faith. To live every minute with optimism. Never treating her different for her disabilities. Camping in a tent, 20 oxygen tanks and all, Traveling, Disneyland, Ferris wheels, Hikes, Movie theaters,  the many adventures to go find her new blankias, her piling them 10 high on her bed at night each having their own place, then getting out of the pile to come tug on my blanket and ask to have mine for the night too. LOL. Pumpkin patch trips, Meeting Cinderella, Belle & Pluto. Slides galore, pushing her for hours in a swing because she liked the breeze on her face. Staying up for 3 days straight with her because she couldn't sleep. Buying hundreds of different foods to see if she could eat by mouth, riding a tricycle, blaring the ting tings, Disney on Ice several times, going to pre-school, beating the Dora game on her Nintendo DS lite, going to farms, where she would talk to the chickens like friends, I could go on for hours about the things we did together and I loved it all. I miss it all. Thanks for the Adventure Libs.

Her everyday happiness was infectious. She opened my eyes to the strongest love possible. Being her mommy was the best part of me.

I remember when she was 9 months old, she got out of the cath lab, and the dr's told me she probably didn't have long to live, maybe a year, and that a full life for children with her combo of defects was 5 to 11 years. I had to leave her side to be alone. I completely fell apart, I cried harder than I've ever cried before. I felt pure anger at the Doctors for no reason, I was a ball of several different emotions. A young volunteer saw me, he came in and he held me, yes a stranger with a look in his eyes that he knew exactly what I was going through. I cried for a couple of hours. I could see on her face Libby felt my sadness so that very minute I wiped away my tears and vowed that I would not waste the time we had together being sad and angry. I never felt that way again.

Our motto was QUALITY of life before quantity. We would never make her suffer. One night in the hospital room, she lay breathing heavy, gurgling, black skin, saturation 50's, she got in my arms smiling but I knew she couldn't catch her breath no matter how hard she tried and she was suffering. I prayed to God to please take her and end the suffering or give her back to me. That morning with no medical explanation she did a complete turn around and came back to herself. I will always thank God for that answered prayer. I got 6 more months with her. Some people said I was giving up, but I see it as loving enough to let her be in peace. A month before she went to Heaven, she started going downhill. Couldn't eat, laid on the floor crying in pain. I held her for hours, curled up in a ball in my lap, rocking her gently, making up lyrics to sing to God about taking her pain away. In fact that last surgery, I knew how bad it was getting before hand so I decided I would not ask her to fight just for me, to do what was right for her. I told her I wanted her with me more than anything but that if God wanted her to please go with him and to not worry about me, that I would be okay and her comfort and peace were first priority. Even though it was an accident that caused her passing, I believe it was time for Libby to go to Heaven and feel whole again. I believe every Doctor and Nurse have good intentions and I would never blame anyone. Do I hurt? Yes but I am sad because I miss her, not because of where she is.

I stayed with her the night before she passed, until 3am, I stood at her bedside, rubbing her forehead (the thing she loved the most). I went home to sleep then the next morning I got a call from Mike that they just started CPR and they would do it for 5 minutes and I needed to get there. I felt so numb inside, I ran in there, so many people in scrubs, so many on top of my daughter, pushing her little chest, trying to bring her back. I felt so sick to my stomach, I wanted to scream and push them all away. I told them to please just stop and let her go. Sometimes I wish they hadn't done CPR. The image I live with is horrifying and unreal. They stopped and handed her to me. I held her little body for so long but it seemed like no time at all. I didn't want to leave her even though I knew she was not there.

I am a different person now. I have a Libby sized hole in my heart. I believe it makes me a stronger person. I love and feel emotions deeper. I live a life of gratitude. My Faith is stronger. Hope is never lost. Every worry and stress are so small now. I even treasure the fact that I can breathe without struggle.

It's nearing a year without my daughter. I want to tell God thank you for blessing me with Libs. I want to tell Liberty Thank you!! Thank you for saving me. Thank you for loving me. Thank you for you. ILY.