Your Children are Not Your Children

"Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday." - Kahil Gibran

Eli, your short life is not what I would have chosen for you or me or Nolan. Not even close. I would have chosen for you a quiet, joyful childhood, growing up with your brother. You would have experienced the regular childhood and adult experiences of laughter and tears, failure and success, happiness, creativity, friendship and being in love and having your heart broken - And you would have used all of those experiences as a powerful force of love to change the world.......

But I now know that you had your own contract and agreement with Life. I was right that your spirit was meant to be a force love on this earth but in a very different way. Your spirit lives through in Nolan and helps him take on and conquer the challenges in his journey in Life. You are in his smile and laughter and in his tears at night when he has cried out for you. When he says your name and points to your picture. I know he knows you.

Your spirit lives through me. In everything I do, everything I am - mothering your brother, teaching my students, working with my clients, caring for myself, my relationships with everyone. My goals and intentions for my life were set in movement with the birth of you and your brother and clarified with your death 11 days later. I work to be a force of love on this earth because of Nolan and because of you. Every day I unwrap more gifts from you and your short time on this earth. Your spirit is eternal and while my mama's heart still desires to hold your hand, hug you, kiss your face, hear your laugh, see you play with your brother, I know that you are here with me and that love continues on.

"A luminous light remains where a beautiful soul has passed."
You left this earth five years ago today. Your light is just as strong.

Two Years and Love

The second anniversary of Eli's death. The anniversary of the death of your child is something no parent ever wants to experience. As I was laying in bed this morning I flashed forward to the 20th anniversary of his death and I quickly wondered if I would be crying that morning too after crying myself to sleep the night before....


While I was driving in the car today I heard this song - many times. I kept hitting replay on my ipod.
http://www.youtube.com/watch?v=X1Fqn9du7xo
Adam Lambert - Whataya Want From Me
I know, might seem corny, but just hang with me for a second and keep reading.

From the first moment I heard the song in 2010 it brought tears to my eyes. The lyrics moved me but I couldn't completely understand why, until today. That was when I started to cry - I got it..

Hey, slow it down
Whataya want from me
Whataya want from me
Yeah, I'm afraid
Whataya want from me
Whataya want from me

There might have been a time
When I would give myself away
(Ooh) Once upon a time
I didn't give a damn
But now here we are
So whataya want from me
Whataya want from me

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Yeah, it's plain to see
That baby you're beautiful
And there's nothing wrong with you
It's me, I'm a freak
But thanks for lovin' me
Cause you're doing it perfectly

There might have been a time
When I would let you slip away
I wouldn't even try but I think
You could save my life

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Just don't give up on me
I won't let you down
No, I won't let you down

So
Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
(Whataya want from me)
Whataya want from me
Whataya want from me

This had been my song to my higher self, my soul, my God.
Screaming at the top of my lungs -
What do you want from me????
Begging them not to give up on me as I figured all this out. Since the pregnancy diagnosis in March 2010, I have been smacked up side the head, again and again. Some of them were obvious and beautiful blessings (the pregnancy - twins) and some I had to work REALLY hard to see the blessing (there are still some I haven't shared completely yet). Just as I would catch my breath and balance myself again something else happened. None of them felled me permanently but my knees have been bruised for awhile now....

All of the words are perfect and exactly what I said and pleaded for from above and within -
 - Slow it down
 - Yeah, I am afraid
 - It messed me up, need a second to breathe
 - Just keep coming around (please)
 - WHAT DO YOU WANT FROM ME?!?!?!?!

The answer, I hear now, I understand now. You want me to love, know love, give love, BE LOVE.  All of these things I have experienced since March 2010 have broken down my denials, my illusions, my protective barriers. I have been laid bare and I now understand that the ONLY thing that is real and worthwhile in this human experience is Love.

And so I will listen -
Stop fighting.
I will Love.
Loving takes courage.
Loving is not for the weak.
It demands vulnerability.
It demands surrendering.
It demands being real.

And it is the only option in my life now - to Love.


So, I chose to make this day, September 15th, the first annual Love Out Loud Day. I deliberately chose Eli's angelversary because of all I have learned of love during my pregnancy, the boys birth, Eli's death and every day after that. Love is not the absence of sadness or grief. Love is a choice in the face and experience of absence and grief. Often they go hand in hand. Sadness and grief do not cancel out Love, they just makes us work harder to see it. On September 15, 2010, I loved and had to learn how to care for a premature baby with some special needs and a baby who had died - at the same time. For my own sanity and ability to function I HAD to come from a different place in love. I HAD to go bigger in my understanding of love. So I choose today for Love Out Loud Day. It was the only day that made sense for me.

I am already beginning to kick around plans for next year. I want to plan some community events in support of Love Out Loud Day.  I am still working on the website for it - www.loveoutloudday.com.


All this because two little boys came into my life on a roller coaster experience. One was able to stay with me and one needed to go back home.

Post Surgery

It has been a week and half since my ovary-ectomy and I have been healing well. I have a tendency to treat these types of things rather casually and then wonder what the heck was I thinking afterwards. It's probably part of my "rose colored glasses" syndrome. While I absolutely can be sarcastic, deep inside there is always a part of me who is looking to find the positive in every situation. While I have been challenged in that talent in the past couple of years I find that it has honed my skills in finding the positive. As a matter of fact it taught me to sit and wait through the pain if need be because there would be something positive coming. Who would have thought?

Anyway, I made it through the surgery and the after effects of the anesthesia, no throwing up, no violent shaking just the usual waking up in pain. Once again I couldn't lift Nolan for a couple of days so my mom, the 65 year old body builder (lol) was my muscle in caring for my son. Thank goodness for her!

My belly is still a little lumpy from a couple of the incisions but I know that will heal and go away. I have been wondering about any emotional feelings about having one of my ovaries removed. I thought I might feel some sadness or feeling of loss, but I don't. Either it has not shown it's face yet or because I still have one working ovary and do not need any type of medication maybe there is no grief to experience? I will learn next week what the doctor hears back on the pathology of it. It is my greatest hope that this be done.

I have been having some challenges with "where I want to be" right now. I am a member of a good sized online community who have come together because TTTS impacted their life somehow. I am a member of two grief groups, co-admin of one, and then a member of one larger general group. I have been questioning my need to be there and who/what I am serving by remaining. I love the parents I have met there, especially the loss parents and the thought of leaving is hard but I just don't know if I am making a difference or helping anyone with staying. Everyone has a limited amount of time they have to give to any one thing, whether that time is 30 minutes a day or 30 hours a week and because I feel so connected to some of these beautiful people I am at a loss in deciding what is my available time. I guess I will know this answer when I know it and so I will wait.

I am also a part of a grief support group that sends care packages out to newly grieving TTTS mothers/parents just to say I know, I have been there, I am sorry for your loss. I sent my 2nd package this week and I got a message from the mom I sent it to saying thank you. That means a lot to me. I went through much of the loss of Eli and Nolan's NICU stay by myself, by my choice. I had support from my mom and a good connection with a couple of the NICU nurses there but I didn't talk to anyone who had gone through it. I wonder if it would have helped? For as passionate as I am in offering support it is interesting that I never even asked about or looked into getting some for myself?

Eli died 19 months ago tomorrow morning. I had a big cry last night. It just hit hard out of nowhere. Sometimes it is still so difficult not to wonder how Nolan and Eli would play (or fight) together at this age. Nolan is so beautiful and full of spirit and joy. I have had the thought that if I had both of them here with me that I would explode in love. I don't know how my human heart could hold the experience of having two sets of Nolan's eyes looking at me with love like he does. Then my human heart hurts because I will never know, at least not in this lifetime.

Nolan and I went for a walk a couple of days ago and this was the Eli sky we were gifted to see together.

Thank you Eli.
We love you.

Good news

Happy Birthday to me!

I got some good news for my birthday last week.

As it turned out, the ultra sounds and MRI's that had been done on my back because of the car accident showed something unexpected. A cyst on my right ovary. I have had ovarian cysts and endometreosis before so it was not a big surprise when another one was found. So I got my referral to the ob/gyn, made my appointment and showed up.

Now, I have to say that this was my first ob/gyn appt with a doctor that did not know the story of my boys and our fight for their lives. As I sat in the office filling out the paper work my mind kept going blank -
How many pregnancies?
How many live births?
How many living children?
How many surgeries?
I found that I would look at a question on the sheet and instead of answering it I relived the question and answer in my head and would completely forget what I was doing.. It took me a long time to complete the forms and a lot of deep breaths to keep the tears at bay.

Finally I completed everything and was called back to see the doctor. First time I had ever met him. He was very matter of fact, not unkind, just direct. Whenever we got anywhere close to my recent pregnancy I would feel myself floating away again. But mostly we talked about my past endometreosis and ovarian cysts. It was very comfortable and casual until he did the ultra sound. Suddenly his voice became serious as he started talking about cancer and possibly needing a hysterectomy. My head almost spun because of the quick change.

What he was seeing was a complex tumor, he said. Suddenly he dropped the term cyst and because of my family history with ovarian cancer he wanted this taken care of immediately. He told me that I was to get the CA-125 blood test for ovarian cancer. If it came back positive he would direct me to a gynecologist oncologist for an entire hysterectomy. Even though there are MANY false positives for this test, that was his plan. If it came back negative then he would remove my ovary himself. Either way, due to the type of tumor there was no allowing it to grow or burst on it's own as it could make me very sick and damage other internal organs. He sent me directly to the lab in the next medical building over and I felt like I was in shock...

All of this happened before the amazing experience of letting go of the previous post. It was actually the afternoon after this appointment that my fears dropped away but I did not want to post anything about the doctors appointment until I knew the results.

Well, the wonderful news is that the test came back negative for cancer so I will be getting an ovary -ectomy. I don't think that is a real word but it sounds funny. And because of the amazing realization of the last post I am not worried. What shall be shall be. I shall take care of myself, love my life and those in it and move forward. It looks like the surgery will be in the next couple of weeks. I am ready to complete this cycle.

PS - just in case I did not remember, I am a mom. How do I know this? Well, I took my son to the childrens museum in celebration of MY birthday. :) Here is a picture of him looking at the kids playing below


Nolan got me a special birthday gift because it was 18 months ago on March 15th that we said goodbye to our sweet Eli. He gave me two solar garden butterflies. I put them out in the yard on Eli's anniversary and here is a picture of how they lit up that night and every night since then.

I Did It! I Felt it.

I did it! I made it through one of the most challenging years for a new mom, the first year of their child's life. I have also made it through one of the most painful years of my life. The first year after my child's death....... Not sure how. At times I questioned whether I could but here I stand - well sit. I am here.

"It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children." - The Invitation by Oriah Mountain Dreamer

I have lived the second part of the above quote many times over this year and I got up every single morning. I got up. There were days when I went right back to bed as soon as I could but I got up, showed up and gave as much as I had. I did it.

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow." — Mary Anne Radmacher

Another quote I have lived this year. There have been mornings, there have been days where I felt as though that was my only saving grace. This day will end. I will have some type of sleep and the sun will rise again tomorrow. Please, God, help me get to that sunrise tomorrow.

See, tomorrow is September 15th. At 8:18a on September 15, 2010 my son, Eli Michael, left this earth in my arms and somehow, by the grace of God, and a little bit of courage, I have made it to September 15, 2011 with his brother, my sweet Nolan, right here with me.

That's the "I Did It!" part of the post. Now on to "I Felt It!"

Part of my philosophy of life is that it doesn't end, not really. Time in our bodies end but our souls, the energy of who we are, is endless and timeless. Our souls are pure energy that shift, transform and change but do not disappear for it is impossible for energy to disappear. These statements have rung true for me, in some form or another, since I was a child.
I loved the movie "Powder". Below I have posted the end of the movie and it shows what I believe to be some form of truth to when we leave our human bodies.

Powder - click to watch

Now most of us probably will not leave this life running with lightning
and
I have always believed that when we love someone one and they die we carry a part of them with us
and
they become a part of everything else again. Their energy/soul does not die or fade away or disappear. It expands.

"Do not stand at my grave and weep,

I am not there; I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on snow,

I am the sun on ripened grain,

I am the gentle autumn rain.

When you awaken in the morning’s hush

I am the swift uplifting rush

Of quiet birds in circling flight.

I am the soft starlight at night.

Do not stand at my grave and cry,

I am not there; I did not die." - I do not know who wrote this. It is not mine.

Wonderful and poetic and somewhere I have always believed it to be true.

September 15, 2010 and my 11 day old son dies in my arms after I tell the doctors to stop resuscitation. Those images from "Powder" and words like that poem were some of the furthest things from my being. My entire moment was filled with knowing that my son was stopping breathing and his heart was slowing until it stopped and there was nothing for me to do but be with him. The depth of shock of that moment was beyond anything I had ever known. There was no room for poetry in that instant of human anguish. Not for me. Not then.

Fast forward, now to September 13, 2011. I had been spending many nights crying myself to sleep knowing the 15th was coming and that would mean.... Well, I didn't know what that meant but I knew it hurt. It was taking me back to some of the overwhelm and grief I had experienced shortly after Eli's death. On the 13th, I worked a long day teaching online that morning, seeing clients during the day and teaching at school that night. When I left I was exhausted. I walked out of the school doors and saw that it was POURING rain, sheets of rain. The sound was scrumptious. The smell was heavenly. I walked to my car and was soaked by the time I got into it. The rain felt clean and cold on my skin. I actually turned on the heat in my car. I got home. Kissed a sleeping Nolan. Said goodnight to my mom. Changed into my pajamas and stepped out on the patio. I breathed in a lung full of fresh rain washed air and I felt it. I felt it! I felt him. My sweet little boy Eli. I breathed him in. He was there, in the clear night air. He was the clear night air. I knew it. I felt it. He was with me, surrounding me, in my breath and my blood. I felt him and I knew that I had finally, at least for a moment had gotten to experience the gift of what I knew to be true. He had never left...... I felt him alive and real. And I was blessed.

And so, I will wait for another experience like that to happen again, and another one and another one. Until they form a line without separation so that it is simply how I live, knowing that my darling little boy who left physical form way too soon for his momma is alive and real, right now. I am not there yet but I now know that I will be. If I can live that way just for a moment I can live that way for the rest of this life. And so it is. I am grateful.

First Birthdays and Angelversaries

So last Sunday was my boys' first birthday. How strange to only celebrate with one of them. I held the party at a beautiful park. So many family and friends joined us in the 110 degree heat - Oh My Goodness.....

I was really excited to celebrate Nolan's birthday. I feel like he got shorted. He and his brother came very early - before the shower. Then of course Eli died and Nolan was in the hospital for over 2 months after that. When we did have a baby shower, it was very small. The situation of my boys' birth just did not leave much room for the celebration my little miracle deserved. So, I was so very excited to give Nolan the party he deserved where he would be celebrated as he should have been.

It was an emotional day for me, very up and down, tears and smiles, and sometimes both. One of Nolan's and Eli's NICU nurses, Amy, joined us at the party. The moment I saw her walk up to the party I started sobbing. I surprised myself. There was such emotion that sprung up when I saw her, the gratitude for her care of my sons, her connection to Eli and the fact that the last time I had seen her was the last night Nolan was in the NICU. For a couple of months after Nolan's release I would call/text her with questions or concerns, she was always there for me. She truly was a guardian angel to Nolan and I during the first months of his life.

Amy feeding Nolan with me watching - she taught me how to feed Nolan!

There were a couple of more times throughout the party where I shed some tears, whenever I spoke of Eli. About midway through the party I invited everyone to take a sharpie and write a note to Eli on a balloon so it could be released to him at the end of the party. I could barely get the words out before I started crying. We released them at the end of the party. They had notes of love written all over them.



I am coming up on Eli's one year angelversary. That is a term many mothers who have lost their babies use to explain that devastating day when their child left their arms forever - angelversary. I CANNOT believe a year ago today I still had two little boys living, developing and growing as they should have been. A year ago today was the first day that I had held both of my days in one day and I held both of them at least once everyday until Eli's death. I want to do something special with Nolan in memory of his brother but I don't know what yet... I guess I still have time - "A" day is September 15th. Eli died September 15th. September 15th.....

To end I want to include a picture of the beautiful birthday boy with birthday cake all over his face. I love you silly monkey!

So Many Things

Wednesday after the surgery

Nolan is out of the hospital and doing amazing. He was kept an extra day just because of the problems caused by the double intubation and the trauma done to his trachea. They gave him a couple shots of steroids to help with the swelling. Those sent his blood pressure up so they stopped them and kept him another night for observation. We were released Saturday morning. What an amazing little boy. He is such a good healer. So now he is getting tylenol a couple of times a day, is a little fussy and sleeping a little more but is doing amazing for having surgery on his skull just a week ago! He gets measured for his helmet/band this Thursday and should be wearing it by next Thursday. It was a sleeping day today. He slept well this afternoon and mom got a great nap in too. Trying to catch up from 3 days of living and not sleeping in the hospital again. The stress is slowly fading now that I have Nolan at home and my arms again.

I have the ability to see colors around people. I don't physically see them with my eyes (that would be wonderful if I could!) more like a sense of it or maybe like how you would remember a color after seeing it. Anyway - I have been seeing Nolan in a circle of pink light for months, which always made me happy. Pink light meaning wrapped and held in love. On the morning of the surgery I noticed that the color around him changed to a beautiful, brilliant white. The white of Divine love and protection. It was a good thing to see. I know he was surrounded by his angels, my angels and our angel Eli.

Today is the five month anniversary of Eli's death. I slept with Eli's teddy bear last night. Every time I moved in my sleep I was very aware of where the little bear was so that I could continue to hold it tightly in my arms. Cried myself to sleep and a couple of times today. I heard something in the movie "Eat Pray Love" last night that made me think about my grief. They were talking about still loving and missing someone after a break up. The response was - "Every time you think of me, send me love and light and let it go." The sending of light and love is no problem, I was doing that with both of the boys before they were born. My challenge is to "let it go". I realized that my grief has to do with my unwillingness/inability to let it go. I want to hold Eli to my heart again, kiss his little nose that was exactly like Nolan's - not let him go. Of course I know that I will never hold him to my physical body again. It is impossible in this lifetime but at five months I am unwilling/unable to let go of the desire to do so. The space between what is true and what I desire is where my grief exists. My son Eli is no longer on this earth and no amount of anything will change this. I can fight what is true or accept it and let it go. - When I am ready - I am not quite ready yet. I can only do what I can do. Being compassionate and kind with myself is what I can do right now.

Finally, I am so grateful for all of the love and support sent to me and all the healing and love sent to Nolan while he was in the hospital. As a wise friend of mine pointed out to me. "Is it possible that all that you have received has brought about the miracle that his case was better than many and the surgery needed was less?" Why yes, yes it is possible.