Three years

It has now been three years since I lost my little one. Back then I thought life would never go on. I felt shattered inside. It has been a long journey, a long, long road to where I am at now.  I felt like my world stopped that day, I use to lay in my bed at night and cry for hours until I became sick before sleep would come. The first few months even though you know it's completely impossible you pray and beg for them to just come back and for it all to be a tragic nightmare that you can wake up from. I use to wake up and run to find her, use to go to take her out of her carseat before leaving the car, then you realize what you've done and that shes not going to be there, it shatters your heart all over again. What a difference three years makes. When I think of Libs now it's not the achy I just can't go on because I miss you too much feeling but a wow I was extremely blessed to make so many happy memories with you feeling. I was lost at first, I went from being a busy mommy, every 2 hour medications, every 2 hour feedings, appt. after appt., sleeping 1 hr a night on a hospital couch for over a year, dedicating every minute of my life to making sure she felt safe, loved and happy. Then she was gone and there was just "me", no longer mommy, protector, nurturer, hope bringer, smile maker. I loved every minute of being in that role and I felt I completely lost myself. I didn't "heal" because really there is just no "getting over" the loss of a child, but I learned to cope, accepted my feelings and grief and I took as many steps forward as I could even if they were tiny and I got to the point of not feeling empty anymore. I do not weep on February 20th, I do not scar that day with pain, I lift that day up as a celebration of who she was and her journey into the eternal afterlife.

Ily Liberty and I miss the little things like your constant singing and twirling, standing in front of the washer and dryer for over an hour with you because you never wanted to lose sight of your blankia as it was being washed, reading baby goofy catches a fish a hundred times in row because you asked and your face lighting up with excitement over the same part every single time, arguing with you about if deer and goats are the same thing lol, sharing french fries, walking around the store way, way longer than we ever needed to because you thought the shopping carts were the best thing on earth, watching you drag sticks on the ground during walks because you loved the scraping noise and then you being annoyed that your stick had somehow gotten shorter, sneaking you down to the hospital cafeteria every night and letting you get flowers, I miss you telling me "good job" because you'd try to mimic the animated voice I had always said it to you in and yours would come out so cute and funny, i say it your way now without even thinking and I smile every time, I miss you coming up and putting your little face against my lips and then asking for a "snuggle bubble" and giggling with anticipation of some very big hugs, kisses, and tickling, sometimes you couldnt even finish asking because your excitement would bubble over into full laughter. I miss you laying your head in my lap and looking up at me with adoration and the feeling that I felt that I couldn't be more loved than in that moment. You gave me a lot of memories to hold onto and get me through these times without you and I will never forget you or our unbreakable bond.

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