Today I dreamed of Luke. It was so vivid. While I can't recall the events of the dream, I felt the hurt. I woke up half expecting him to be beside me. To comfort me. I just knew I had felt him in my arms. Dreams are so funny. So surreal. To have imagined the feel of his skin and wake up to an empty heart again hurt. Is this where I will find my solace from now on? In dreams? Is that how I am destined to live my life with Luke? Is that the only way I truly have him with me?
I went back to work again today. And again I saw someone who I hadn't seen since I had Luke so unexpectedly. And again the hurt cut into me like a jagged knife. But I have to learn to live with this life. I have to understand that this is me now. For the remainder of my days on Earth I will be that woman. But I know I am not alone. So many women have to face daily life after a loss like this and I am no exception. I can either let this tragedy define me or I can live life again. And everyday I will fight to live life again.
I have a birthday coming up. Even as I type this I roll my eyes. Another year. What do I have to show for it? I'm still in the same place as I was last year, only now I have lost a baby. My baby. My sweet son. I will be 28 years old and I laugh at the thought. I feel like I am 128. Should I be proud? Should I be grateful for the days I have lived in hell? Every day since October 4th I have experienced a new feeling in life. Some good, some excellent, some so terrible I wish it were a bad dream. But I wouldn't trade one of them. If I knew I would have the same outcome, if I knew I wouldn't be able to keep Luke with me either way, I wouldn't change a thing.
One of Luke's nurses from Children's sent us a card Friday. A hand written card. She told us how upset she was to come in the Monday after Luke passed and not have him to care for anymore. She too lost a child. She shared her story with us and it brought me to tears. She was our favorite nurse and I suppose now we know why. The care she took with him. The loving hand she had with him. It makes perfect sense now. She took care of Luke like he was her own because she too experienced the pain that we were. She gave us her helpful advice and she showed that she still cares for us regardless of our outcome with Luke. That takes a special person. Not many people can say they have that.
I want to share a memory of Luke that we had a couple of days before he passed. It was the second time Kathy, the loving nurse I speak of, worked with Luke. Luke's fluid retention was terrible and he was leaking fluid, as I already shared. She told us that she had given him a massage the last time she was with him to help move some of the fluid and he responded very well to it. She asked if we wanted to massage him. When Luke got sick with his tummy we couldn't have Kangaroo time with him anymore. He was too sick and the stimulation may have been to hard on him. Scott never got to have Kangaroo time with Luke. He actually hadn't gotten the opportunity to do much touch time with him at all since he wasn't at the hospital all day like I was. When Kathy offered to let us have this touch time with him my heart skipped a beat. As much as I longed to do it, my heart told me that this was Scott's opportunity. This was his time to have with Luke since he didn't get much before Luke got sick. After a couple of minutes of reassuring him that this was his moment to have, he massaged Luke for about 15 minutes. The response from Luke was amazing. He loved every second of it. His breathing improved, his heart rate evened out, his body temperature stabilized. It was amazing. And heartwarming. The father-son time Scott deserved was here and it was the best thing for both of them. I sat in the chair in awe of the experience. Kathy commented the entire time about how well Luke was doing with the stimulation. Then the sweetest thing happened. Luke smiled at his daddy. Recalling that memory brings tears to my eyes. It was long overdue.
Kathy then told us she had to change the dressing on Luke's central line. He generally didn't do well with this. In fact it pissed him off. I chuckle to think of it. He didn't want to be bothered! He was feisty and didn't mind letting anyone know that. Since he had a breathing tube he couldn't have a pacifier to soothe him. So she dipped a q-tip in saline water and instructed me to insert it under his breathing tube and into his mouth. I did so and he loved it. He sucked on that q-tip the entire time. I talked to him. I told him that it was just a minor irritation and it would be over soon. He never got agitated. He just sucked on that q-tip and smiled. Our touch with him and hearing our voices was the most comforting thing to my sweet son. I will cherish these memories forever.
Kathy mentioned these memories in her note to us. She remembered. She held these memories close to her heart just like we did. She told us that she would always be here for us no matter what and that she would always have a special place in her heart for Luke. I wonder, did she make bonds like this with other parents? Did she see something in us like we did in her? It's amazing to think of the people that situations like these bring into your life. If this had never happened with Luke, we would never know Kathy. We wouldn't know one of the sweetest people in this world.
My sweet Aunt Joyce went to Heaven on Friday. Her body no longer wanted to fight. I think of her and wonder if she finally met Luke. I wonder if she's telling him stories of his mother when she was young. I wonder if she is comforting him and telling him that everything is ok. Death is strange. It is not prejudiced. It takes the young, the old, and all ages in between. I thought of my Aunt Joyce today. She loved butterflies. I used to love going to her house as a child because she had butterflies everywhere. While I was on my way home from work, Mariah Carey's song "Butterfly" came on the radio. While I know the meaning of the song is not about death, I couldn't help but interpret it as a sign of my Aunt Joyce. Her spirit is now in the happiest place imaginable and I hope she is in a garden full of butterflies. At peace and not suffering. And maybe she is showing Luke butterflies and sharing her love in the beauty of nature with my sweet son.
"When you love someone so deeply
They become your life
It's easy to succumb to overwhelming fears inside
Blindly I imagined I could
Keep you under glass
Now I understand to hold you
I must open up my hands
And watch you rise
Spread your wings and prepare to fly
For you have become a butterfly
Fly abandonedly into the sun
If you should return to me
We truly were meant to be
So spread your wings and fly
Butterfly
I have learned that beauty
Has to flourish in the light
Wild horses run unbridled
Or their spirit dies
You have given me the courage
To be all that I can
And I truly feel your heart will
Lead you back to me when you're
Ready to land
Spread your wings and prepare to fly
For you have become a butterfly
Fly abandonedly into the sun
If you should return to me
We truly were meant to be
So spread your wings and fly
Butterfly
I can't pretend these tears
Aren't over flowing steadily
I can't prevent this hurt from
Almost overtaking me
But I will stand and say goodbye
For you'll never be mine
Until you know the way it feels to fly
Spread your wings and prepare to fly
For you have become a butterfly
Fly abandonedly into the sun
If you should return to me
We truly were meant to be
So spread your wings and fly
Butterfly
Spread your wings and prepare to fly
For you have become a butterfly
Fly abandonedly into the sun
If you should return to me
We truly were meant to be
So spread your wings and fly
Butterfly
So flutter through the sky
Butterfly
Spread your wings and fly
Butterfly"
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