Longing....

Sometimes there are things that touch me. Turn me upside down and inside out. Often they highlight a feeling of longing deep within me. A feeling that I rarely hang out in. I am a pragmatist. I feel whatever feelings come along but if they do not move me where I desire to be I pay little attention to them and move on.

Longing - deep yearning or desire for something. I have had inexplicable moments of longing for all of my life. Sometimes, in the past, I could pin it on something like wanting a lover/boyfriend, or being somewhere else, or even pictures of the Universe. Real images or not, they bring about a sense of longing, like I remember a time when I lived amongst them, so much more than I do now.

I think we all experience longing. A huge part of grief is longing. Longing that things could have been different. As a parent of a child who died the longing can be intense. It is your job to keep your child safe. The belief that if you or someone else would have done something different, your child would still be here, alive.... It can be very heavy. In my grief experience that is something I chose to explore very rarely. And that is not a judgment towards anyone, including myself. Everyone's experience of grief is different. For me I found it impractical. I focused on the raw pain, deep sadness and even rage from the experience. But, what was done was done. If anything like that happened again I would make some different choices but I could not change the past. Nor could I change the fact that my son was dead.

And then a song like this comes along. It's been out since 2011 but I am hearing it and feeling it now and I cannot stop listening.

The longing it elicits is not connected to any one thing; a relationship, being somewhere else, what could be, what used to be, the Universe, the life of my Eli... but rather all of it.

I can say that the feelings of inexplicable longing are more poignant, powerful, timeless and common since the death of my son. So I am listening to this song over and over again and crying. Tears are streaming down my face as I write this and listen to the song. And I feel that in this seemingly strangeness or even silliness that there is healing that is occurring with each replay. It's like another part of me is being opened up and released through my tears every time the song starts again.

My son and his death truly has been and continues to be the crack in my being that lets the light in.

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.

Regrets

For most of my life I actually have had very few regrets in my life. I have almost always done what I thought was best based off of my internal guidance and intuition. It has guided me well. The only times it has faltered were in times of fear. As with most people, when I am in fear I am unable to tap into my inner knowing, listen to the wisdom and do what I knew was right for me and my life. My TTTS pregnancy, hospitalization, birth and the boys NICU stay was a time of deep, cell shattering fear. Not fear for me, never fear for me but fear for my boys and their lives.

So why do I bring this up now? A couple of friends of mine posted on facebook a wonderful video a loving family created to chronicle their child's 10 day life on this earth. So many pictures with family and friends. Time spent together with clear knowledge that every moment was a moment stolen and a gift of love. While I know that there were tears and pain and sadness, this beautiful family seems to have been able to remain in the beauty and love of the moment. They were present and loving what was now. Here is the video, if you wish to watch it.

And so I regret....
I know that my love and joy for Eli's life was as strong and powerful as the lovely family in the video
And
I was so filled with fear and physically exhausted from the experience of TTTS I did not share the amazingness of my boys during my pregnancy. My sister asked for pictures of my pregnant belly and I straight up refused. I am saddened that I do not have more of those. I am saddened that I did not have more joy during my pregnancy. I did not speak to people while I was in the hospital on bed rest nor did I want anyone to visit me. It was fear, all fear, for what might happen. I was frozen inside and I internalized it all.

Now of course I could have never guessed that Eli would catch an infection and end up dying from that infection before he was 2 weeks old. And I wish I had more pictures of him and his family members who came to see him. I wish I would have made a point of others seeing him. I wish. I wish. I wish.

I could say that TTTS took all this from me and in part it would be true. But if I were to be as true and honest as I possibly can be, from the deepest part of my being, I would have to admit that it was my fear of the future and what might happen that truly took away the moments I now regret never happening during Eli's life. I know that I had every right in the world to be as fearful as I was and I have been complimented on just how strong and brave I was. And now almost 3.5 years later I can understand and say publicly that my fear stole things from me just like TTTS did. I had little control over the TTTS. I had complete control over my fear.

So, what do I do now?
I grieve and forgive all that I believe I lost due to my overriding fears.  Once I have done that I will begin to choose a different way of being. I have understood for a long time that fear of the future steals from the love and the beauty of now. I am finally strong enough to experience the grief of my fear, heal it and choose to be different for myself and Nolan. Always with a undying love and gratitude to one of my most beautiful of teachers, my son Eli.

I let go of my fear and regrets, forgive, and move forward and learn how to choose love over fear
Every
Single
Time

25 Events of 2013 - In No Particular Order

    1.       We got Nolan’s official diagnosis in May – severe autism.

    2.       A beautiful friend of mine died unexpectedly in his sleep in February – I miss you John.

    3.       Finally had the finances to do some of the things I had been wanting to do in Eli’s name since he died in 2010. Every single penny and every single moment was worth it. 

    4.       I became a published author again! Thanks Tova!  

    5.       Police, CPS, family court and lawyer’s fees – oh my……

    6.       Nolan started developmental preschool. He is absolutely thriving there.

    7.       Helped support some fellow baby loss moms in connecting with their child on the other side, on their own.

    8.       Started back to college to finish my degree. My sister was my inspiration.

    9.       I have heard my little man’s voice. Nolan finally picked up the first sign. We had been working on it for months and he hasn’t looked back. He’s now up to 5 and starting to sing the alphabet.

   10.    I didn’t get to see my niece and nephews in Tucson as much as I wanted to this year. I miss them.

   11.    Took HUGE steps in healing old wounds, forgiveness of myself and others, reclaiming my power and remembering to trust in the Universe.

   12.    Months and months and months of being up 2-4 hours in the middle of the night with a little boy who doesn't sleep well.

   13.    Amazing moments of cuddling, silliness and love with my little one in those 2-4 hours of middle of the night awakeness.

   14.    Knowing I am stronger than I ever thought I was, and I have always thought I was pretty strong.

   15.    Finally coming to the point of starting to create holiday traditions for my little family. It has been a hard road.

   16.    Understanding that the new year doesn’t move me further away from Eli. He comes with us.

   17.    My little man sat on Santa’s lap!

   18.    The loss of some old friendships.

   19.    The gain of some new friendships.

   20.    Knowing how lucky I am to have my client base, some who have been with me for years now and they always recommend me to others.

   21.    Being acknowledged as a spiritual mentor to a wildly successful, beautiful and spirited young woman.

   22.    Being told yesterday that I do not look anywhere near 45. I feel like the past 4 years have aged me more than any other time in my life. 

   23.    I finished Eli’s picture book and got his beautiful Molly Bear.

   24.    I am honored to continue to be a faculty member at Southwest Institute of Healing Arts.

   25.    Remembering in all of this that I choose what it means. And I know it means I am blessed.

Two and a half years

It is a strange thing. Getting older has never really bothered me so my birthdays never really bothered me, until recently, and it is not because I am getting older.
My birthday is one day off from the exact 1/2 year of Eli's death. It is strange how certain days take on different meanings as time goes on. Nolan and Eli were born on September 4th. Eli died on September 15th. My birthday is March 14th. I have noticed that the time around my birthday is almost as emotional at September 15th is.
I think it is a combination of things. My birthday indicates another step in time that I am taking away from my baby boy. Another progression in life that I am taking that he is not here to take too. And I just miss him. I have been feeling my grief for the past couple of weeks; bursting out in tears at something on the tv, crying myself to sleep, being distracted and disorganized. I think Nolan felt it too tonight. He was clingy at bed time wanting extra cuddle time before sleep.

My birthday was quiet yesterday. I did homework. Nolan and I went to target and to the chiropractor. She did some great work on me, helping me with the facet joint that still hurts sometimes from the car accident. She did some great cranial work on Nolan. And then Nolan and I had dinner with my mom at Carrabba's. (I love their calamari!) I had my pj's on by 8:30p and was happy about it. I was hurting from the chiropractic adjustment. It's also been a month since my friend John died. I was missing him too.

Today I had an appointment with an RN, Peggy, from ALTCS (Arizona Long Term Care Services) so that she could evaluate Nolan for ABA services through Department of Developmental Disabilities. I always dread these things. I so desire to speak of Nolan in positive terms, talking about all the growth and development I see him do daily. It is almost physically difficult for me to talk about his delays or limitations. But that is what I did, what I had to do, so that he could be considered for services. Peggy was kind and seemed to be rooting for us. She asked me about his medical history and of course I talked about the pregnancy, TTTS, the laser surgery, PROM, premature birth, the NICU and Eli. This, very possibly, could have been the first time in my life that I did not cry as I spoke of our challenges and how one of my little boys died. Because she was an RN, she was interested in some of the medical explanations for TTTS and I was happy to educate. She looked at me and said "This has been a hellish 2 1/2 years for you, hasn't it." I nodded and once again did not cry. That is when I usually do, when someone makes a kind, sympathetic comment, but not this time. I wasn't holding it back. After 2 1/2 years I am stronger in talking about it. At least sometimes. It seems as though Nolan's capabilities/challenges put him right on the edge for approval of these services. She said she may call me back for some clarification if he scores close or I would just get a letter. If he doesn't get approved right now Peggy also said to reapply at his 3rd birthday. Se we wait.

I see the subtle changes and growth in my little boy every day like how he has gotten to the point of grabbing on to the railing with one had while holding my hand as he walks down stairs. This is such a huge improvement from when going down stairs would overwhelm him so he would just try to dive down head first. These are exciting and wonderful things for my little boy. I am so proud of him. He amazes me EVERY SINGLE DAY.

And finally for my birthday I had my mom look at my solar return (astrology) chart to see what this year had in store. We talked for awhile but the thing I remember the most was her comment "No more mister nice guy." This is my year to stand up and take chances to make big changes.

So while I make those big changes I am going to celebrate those small changes too.

I miss you my sweet Eli.
I miss you, my friend John.

Picture of John feeding Nolan. 

Sacred Stories

I am humbled and honored.

I am working on a public blog for TTTS parents to share their stories and experiences of TTTS. I truly hope and intend that this can become a world wide force in building awareness for Twin to Twin Transfusion Syndrome. We had 276 views to the site today and over 700 in the past week!

In this work I have been honored to receive the beautiful, emotional and heart breaking stories from my fellow TTTS parents. Every time I open my mailbox and see another message I feel as though I am being gifted; that this parent has trusted me with their sacred story of love for their children and the fight they all fought. I hope that I can create the space of healing that their stories deserve.

Please visit the blog and check out the amazing stories being shared.
TTTSParents

A Month of Small Celebrations - December 21

Small Celebration

So first things first, I am celebrating the world did not end. I still have many things to do on this earth.  :)

Second, I received a Christmas card created in remembrance of my Eli in the mail today. Created by the organization ZoeRose.org.  They light the candles on October 15th every year and then send everyone a personalized picture of it. I don't know if this is actually a Christmas card, but that is what I am calling it.

On the  back is this poem ~

The world may never notice 
If a snowdrop doesn't bloom,
Or even pause to wonder 
If the petals fall too soon.
But every life that ever forms, 
Or ever comes to be,
Touches the world in some small way
For all eternity.
The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says that we love you. ~ Unknown

Third, I have started a new job part time outside of the home. Five hours, four days a week. I haven't left the house on a regular basis for this long without Nolan in months. I am celebrating the opportunity to do this work. And I am realizing that young man Nolan misses me when I am gone. When I got home tonight he would not let me out of his sight and we laughed and played and hugged like we couldn't get enough. 

And fourth, I had an attractive, younger man flirt with me today. I was thrilled! And then I realized that I need to get out of the house more often, flash my smile and laugh with people of the male persuasion other than my son!

A Month of Small Celebrations - December 16

Small Celebration

There are times when my mind moves so quick that my typing cannot keep up with it. This is one of those times. Guess we will see how this works.

Since I learned about the deaths in Newtown, CT I have been on edge. I felt like I was wandering around lost and nothing I did could change that. And then finally, tonight I cried. I cried in pain and sadness for the parents left with out their children to care for and watch grow up. The tragic end to those 20 lives on Friday touched off my own grief and sorrow that I still carry with the death of my Eli. Tonight I stepped outside in the cool dark night and cried as memories of the morning of Eli's death ran through my head. His heart rate was slowing but when I sat next to him talking to him, touching him, he stabilized  He knew I was there. And it held his death at bay. For a little while. Until it didn't anymore. I remember sitting numbly on the couch in the room when his heart stopped and the medical team worked to revive him. I didn't cry. I didn't move. I just stared. When they were able to get his heart beating again I looked to the doctor and he nodded and I went back to his bedside. I talked to him, told him I loved him and that I would give him everything I had to help him fight. But if he needed to go I would be ok. He started to crash again and the doctor asked me if I wanted them to begin resuscitation again. I looked at his little body and I knew the fight was over. I screamed no, in a voice that still does not seem like it came from me. And that was it. They quickly removed him from all of the tubes attached to him, wrapped him in his star blanket and handed him to me to hold. He died in my arms. I can see all of this like it happened just moments ago and sometimes, like tonight,
 it feels like it was just moments ago.

So, why am I sharing this now? Because I finally cried the tears I needed to so that I could understand and share what I am feeling about what happened in Newtown. My situation is different but I understand the death of a child like only someone who has experienced the death of a child can. I am familiar with the road those 40 parents and hundreds of family members and friends will walk, crawl through and throw themselves down on in rage, hopelessness and bitter ugly grief. I am still on it. I feel their pain, truly feel it in my own body and I wish that somehow I could do something so they would not have to experience it too. But I can't. Not now. Their children are already gone from this earth. And there is nothing that can be done to change that. But I believe that there are things we can do as a society to try to stop it from happening again.

My small celebration tonight was to have my son fall asleep in my arms. Now that he is a big boy he does do that very often any more. But tonight, I got to hear him breathing, watch his eye lashes flutter. As he relaxed fully and completely in my arms, safe. For this moment, safe.  Which actually is not a small celebration but one of the biggest ones I could have.

This picture is of my Nolan at about 3 months old, or if he had been born on his due date, maybe a week old. This is how he fell asleep in my arms tonight. How I wish I had both my boys here to rock to sleep tonight.

A Month of Small Celebrations - December 6

Small Celebration

I have two today.  :)

First thing that I am celebrating is my sister and her amazing job of completing her bachelors degree in education! She texted me a picture of the letter from her school congratulating her on her accomplishment. And she has decided to go on to getting her masters in special ed! A choice close to my heart. She has inspired me with all the focus she has put into her life to make the changes she decided she wanted. I could not be more proud of my sister right now, for all that she has done. 

And

I am a member of a group of TTTS parents who reach out to other parents who have recently lost their child(ren) to this syndrome. We offer to send them a grief package. I am thrilled to say that I have been a member since the beginning and that I am honored to be a part of such important work. Losing a child(ren) during pregnancy or after birth is a very isolating event. So few people know what to say or do to support the parent in their grief and the grief can be so debilitating that explaining or showing others what they feel or need demands more energy than they have. I know that there were times when remembering to breathe felt like it took all of my focus just to complete. So we personalize our grief packages to the loss experienced by the grieving parent. We try to send little gifts that say "I remember your child(ren) and I grieve their death also". I just sent out my 5th package today. While I absolutely hate that there is a need for this group and I hope that one day that need will stop; it means so much to me that I can be a part of this amazing group of loving and supportive people. Once a child has died we can't stop the grief. We can't fix the grief. But hopefully we can make it a little less lonely. When I say it is my honor to do this, I mean it. 

Here's a picture of my sister and my son from August 2011.

A Month of Small Celebrations - December 1

December, Christmas, the holidays.

This is my third one without my son Eli to celebrate with Nolan and I. The first Christmas I was numb. Nolan had been home from the NICU for only a month and Eli had only died three months earlier. I was struggling to remember to breathe and still trying to heal from a traumatic pregnancy and birth, an extensive c-section and a stressful grief filled hospital stay. I was caring for a medically fragile child and filled with worry. Sometimes getting out of bed was an accomplishment.

The second Christmas, last year, I was rear ended while sitting at a stop light on December 5th. It was a five car accident and I was hurt. I went to the emergency room that night and then went home. Once again, sometimes getting out of bed was an accomplishment. I lived off of pain killers for months. I couldn't lift Nolan up at all. If it wasn't for the help of my mom I don't know how I would have cared for him. Christmas was tough but once again I was numb to the full experience of not having Eli here with us.

This year I have come to realize that this year is going to be the time for me to fully experience the holiday grief. I have been crying regularly and at unexpected times for the past couple of weeks. I know this grief needs to be expressed and released and I want to do that. I will allow myself to cry as I need to and honor my sadness
And
Within that I need to make sure that I honor the celebrations of the holidays. I love Christmas, always have. I have some amazing memories of Christmas with my family as a child and as an adult. I want to make sure I continue to have those memories for myself and for Nolan
So
I have chosen to make December a month where I make sure I see the small celebration everyday. And today is December 1st.

Small Celebration

This morning I was able to set Nolan's bowl of oatmeal on his tray. I gave him a spoon and with a little help he fed himself. He was so excited to do it he yelled "YAY!" after the first 5-10 times. When I had to step away from his high chair I took his bowl and set it on the table and he threw a fit until I gave it back to him.  This is a big celebration because this is the FIRST time he has ever been able to have a bowl of food on his tray and not play in it.  His sensory issues would interrupt his eating and it would be almost impossible for him to do this. I am so proud of him! And even better than that he was proud of himself.

In closing I wanted to post a picture I created last night. December is TTTS - Twin to Twin Transfusion Syndrome - Awareness month. We need more general OB's to understand the dangers of TTTS for identical multiples pregnancies. We need more mothers pregnant with identical multiples to be knowledgeable about TTTS. We want more twins+ to grow up healthy and together.

Pregnancy and Infant Loss Awareness - 2012

Thank you everyone who contacted me to ask how Nolan's appointment went with the developmental pediatrician. We had some insurance problems and had to re-book for December. I have to admit that part of me is relieved and happy about the change in date. Nolan seems to be making such great strides. Both his speech and occupational therapists comment every week how much he is improving.  So my plan is to continue the work we are doing along with the NAET therapies and by December the doctor may see a very different Nolan. He has changed so much since the original evaluations in June I believe he will continue to between now and December.

Last week his occupational therapist mixed up some corn starch and water and created some wonderful goo for Nolan to play with. He LOVED it. It really satisfied his tactile sensory needs. If you have a child I recommend it. It's some weird stuff. It helps Nolan to engage his senses feeding his need for more information so that after the play he can approach other things giving them his full attention. The things I have learned so far in this process still amaze me. But even more, Nolan amazes me. Every. Single. Day.

Tomorrow is the Wave of Light for Pregnancy and Infant Loss Awareness month. October 15th is the day when we light a candle at 7pm local time to create a continuous wave of light that moves around the world. I put this picture together and posted it on Facebook for the day. I would be honored if you would light a candle on the 15th at 7pm too.

I miss my Eli.

It's 1am

It is exactly 1:06am and I am up and looking at pictures of identical twins. Why in the hell would she be doing that, you might be asking... I am not sure I know the answer. Because I miss my identical twin boys. They are not identical now. Why is that important? I don't know. Maybe it's not. Maybe it is just that one of my boys is here with me and one is not. And right now at 1:11am I am feeling it. Not crying though. I am feeling resignation and anger all at the same time. Resignation - it is what it is and there is nothing for me to do to change it. Anger - it is what it is and there is nothing for me to do to change it. One reason, two emotions.

This grief is not for the weak and you cannot know how I wish I could be done with it. I cannot count how many times I have heard "The grief does not end. It changes." and I know that my love for Eli will not end just be transformed, as it already has. Thing is, I am not really feeling all that transformed right now.

As another mother who also lost one of her twins to TTTS just said, "but I've had more good days than bad but there are still days I don't want to get out of bed.." I understand that sentiment. I have lived that sentiment. This process truly is a process that demands the choice to continue getting up and living every single day and sometimes, on bad days, every single hour.  It is a repeated choice. I am blessed to have this choice, and yet, I still wish, sometimes, to not get out of bed and to hide from my life, just for a little bit. Truth is though, that does not work either. It is actually easier to get up, get out, live, laugh and love, love and love some more. But sometimes I still wish.

I am having some of my TTTS friends going through VERY difficult times right now. One beautiful mama had to put herself into a mental health facility to try to support her grieving process. Because grief is ugly but grief that is stuck feels evil to the soul. Another beautiful mama just found out her 3 week old rainbow son has neuroblastoma. What do you say to a mother who lost both of her little girls to TTTS and when she goes on to have her rainbow baby she learns he has cancer? I don't know, so all I have is I love you and I support you in anyway I can.

I would humbly ask that you hold these mama's and their families in your prayers or in love and light or whatever it is that you do to keep hope and strength and courage and love flowing their way.

It is now 1:26a. I believe I am done looking at pictures of identical twins now. It is time for me to sleep. So I will end with the picture of my beautiful little boy. This is his thank you card to everyone who came to his and Eli's 2nd birthday party. It was a great turn out.  :)

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.

Letter To My Boys - Second Birthday

In three hours it will be officially Nolan's 2nd birthday. Five minutes later it will be Eli's 2nd birthday.

I know I haven't written much lately. As I mentioned in my last post there were some changes happening that, to put it plainly, I didn't know what to say. I will talk about those in another post. But I knew that the 2nd birthday of my beautiful little boys and my letters to them was the perfect time to step back into my blog.

So here goes!

To My Amazing Nolan -
What a year it has been. There is no one on this earth who would look at you now and know that you started out fighting TTTS, born 13 weeks early and spent almost 3 months in the hospital with two surgeries under your belt before you were 6 months old. This past year, you moved from standing up with the help of the furniture to running around with excitement and pure joy. You graduated from your need for thickened formula/milk and are now eating like an adult. Well, almost, if you know of any adults who like to rub mashed up banana chunks in their hair or sometimes the random piece of hot dog. I am guessing it is good for your hair because you have beautiful hair.  You are still careful with your words and haven't stepped out to claim any one word as your official first word but boy can you let me know what you want. With the way that you read and study things, sometimes I think you will actually read me a book the first time you talk. :) You have become a fan of the Super Why cartoon on PBS. Even giving a kiss to Pig and Red Riding Hood sometimes when they come on. You have good taste - both are very cute.  :)  You have learned to be friends with Tobey the cat, to Tobey's relief, and understand the term "gentle hands" when you pet him. You love applause and clapping, for anyone, anytime, so filled with joy, smiling a huge smile and clapping away.

You have perfected the art of throwing yourself down on the floor so you have a soft landing during your rare 5-10 second tantrums. And have even been known to laugh at yourself while throwing those tantrums. You have also perfected the art of throwing a ball, actually two balls at once! Your intuitive sense of how electronics work and what buttons do what amazes and maybe even scares me sometimes. And you still shine your light brightly. I see the looks that children and adults give you when they pass by, smiling, waving, little girls coming up to try and kiss you. Oh yeah, that Venus/Mars conjunction in Libra is showing up already! (Astrology talk for charming.)

You got sick for the first time and the second time and the third time this past year but you are so strong that the first time was only for 48hrs and the third time only happened because your immune system was down from the 2nd time.  :0)  You saw a chiropractor and he told me that you had to be one of the strongest little boys he had ever worked on. PS - you charmed him too.

What I have learned from you -
I could spend all day, every day with you and I would still want more. I love that "Nolan's mommy" is one of the hats I wear in my life, one of the most important ones in my life.  Being responsible for you makes me want to do more and do better for you, for us. You have shown me that being present in the moment is one of the best things I can do for both of us. You will always have my heart, even as you grow up, find your own way and make your own life. It is my love for you that has gotten me up and moving every single day this year, with a back injury from an accident and other health issues. There were times before you and your brother when I would hide under the covers to just get away for awhile. I don't do that any more. I get up and make a life for us. Not because I have to but because you have worked so damn hard to be this wonderful child that you are.  You are making it past your challenges and difficulties to be here now, you deserve at least the same from me. You teach me about love every day with every breath, every smile, every tear.
I love you my shining little boy.


To My Amazing Eli -
All I have to do is say your name and I am filled with your presence. This communication and connection between us is natural and real. I love that you ride in the car with me and we talk then. It is that quiet time when I feel close to you. And then just as confirmation you make yourself available to my friends who are open to hearing and feeling you.  People respond to your spirit as strongly as people respond to Nolan.

I know that it is you who is working on the other side to help bring the parents of those children to me. The children who let me know why they do what they do and what their parents need to understand to help them cope and function in this earthly life. And these children see me. Your life and death helped me to step into that part of my work. You also help me in connecting with those who have passed. You are my bridge and I am so thankful.

As I started standing up and speaking to groups again, it was your spirit that came to me. I felt your love and a couple of times simply giggled in joy at the feel of you.  You have helped me, made me Love Out Loud and See Love in all things. I am honored to continue to feel and share your love in my heart with as many as I can.  I will continue acts of service and kindness, large and small, in your name and your memory.

And I still cry tears because this human mama still wishes to see your eyes, hear your laugh, kiss your cheeks and hold you close. I miss you in the physical. It is one of my greatest hopes that I will again get to hold you close to me and know that it is you that I am holding and that you will know me.

Your birthday party is on the 9th. Keep an eye out for those balloons we will be sending to you. They will have notes of love and birthday wishes all over them, from some of those people you have touched. Your name will be on the birthday cake too. Nolan and I will blow out your candle for you. :)

Eli, my star angel. "Some people only dream of angels. I held one in my arms."
"A luminous light remains where a beautiful soul has passed." Thank you for lighting my way through my grief at your departure.

I love you heart and soul.
And PS -
Thank you for entertaining Nolan when he wakes up in the middle of the night. I know, I hear him laughing. :)

To both of my boys -
You continue to do your magic in my life as I knew you would. Just being here, being who and how you are is a gift of love, growth, service, joy, happiness and patience.  I really don't know if things "happen for a reason" or if there is a "great plan" but I know that I will continue to find the perfection of having you both as my sons for the rest of my life. I know I am blessed to have two powerful spiritual beings in my life, as my sons. I am so grateful for you. It is my job as your mother to create places on this earth for your light to shine brightly and I will continue to do that with great love.

So Much Love

There are times when I look at Nolan and I feel like I am going to explode with such love, joy and gratitude.
And then
Sometimes
I wonder how my heart would live through having both Nolan and Eli here.  I feel so much love for Nolan I don't know how my physical body could hold the love if both of my sons were living and I was looking at 2 pairs of bright blue eyes.
It is so strange where our experiences take us and the thoughts that go through our heads when our baby dies. Even 20 months after our baby dies.

I am making an appointment with Nolan's pediatrician this week. I have some concerns about the fact that he is not talking yet.  I know babies develop differently. I know even though he is 20 months his adjusted age is 17 months.  I am just concerned because he does not talk at all.  Not even mama.  He is understanding a lot being said to him. He expresses himself but just no words.  My sister told me that babies start to talk when they need to be understood.  And that if they are understood without words and don't have to ask for what they want then they will be slower to talk. So is that it?  My little one and I talk intuitively so he doesn't use words?  :)

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.

"I am willing to let go of...."

“You decide every moment of every day who you are and what you believe in. You get a second chance every second.” – Not sure who said this.

Sometimes we know we need to change something or many things in our life but still feel stuck, don’t know how to go about it or don’t know what it looks like or don’t know how it can be done. Been there. Done that. Have been doing it again.

Sometimes Life whispers in your ear and you get it, sometimes Life smacks you in the head and you get it or sometimes, if you’re really special like me, Life smacks you in the head a couple of times and you get it. Suffice it to say that as of today, I have been smacked enough Life, I get it!

About the death of my Eli. I love my sweet boy forever and I have a soul connection to him. I will always cherish my 6+ months of carrying him and his brother and the 11 days outside of my womb that I was gifted with his spirit in human form. We had our mommy and son moments on this earth, just he and I, not anywhere near as many as I wanted in this life but they are ours and in my heart. I will continue to do things in my life in my love for him; by myself, with my family and friends and with Nolan. Eli cracked my heart wide open and created such space for compassion, patience and love. And right now I am not living from that place of fullness like I know I can. I have been too busy thinking. Thinking one thought. Over and over and over again. And it hurts every time I think it. So I think it might be time to stop. So here it goes.

As of today, as of this moment, I am willing to let go of seeing Nolan and thinking “There should be two.” It hurts EVERY SINGLE TIME I think it and that serves no one. It does no good for anyone, especially me. One of the biggest curses/gifts of losing one of my identical twin boys is that I know that at one time there was a mirror image of Nolan on this earth. So I have a good idea what Eli would have looked like now and how he would have been AND I don’t really know what Eli would have looked like now or how he would have been. So, I have Nolan my earth baby and Eli my angel baby. I have two sons and my arms only hold one now. The other lives in my heart, my mind, my spirit. Eli is in the sunset, the starry night, the visiting butterfly and in the trees that dance in the wind (Nolan’s favorite). Thinking that there should be two, tears at my heart. There was two and now there is one. Who is to say how it should or should not be? The easiest answer, the answer that lets my heart rest and shuts off my mind is - what should have happened is what did happen. I give up. I surrender. Fighting what is real hurts too much.

So as of today, as of this moment

I am willing to let go of seeing Nolan and thinking “There should be two”.
Nolan, Eli and I deserve so much more.

I love you Nolan.

I love you Eli.

I love you Piperlyne.