Thursday, March 28, 2013

Broken Open

Saw this in my email today - 
"Only in hindsight, Piperlyne, will the miracles become obvious, will you see you were guided, and will you find there was order all along.
"Otherwise," as you once said, a long, long time ago, "it would all be too easy..." ~ TUT

Reading this I remember the vision I had of myself, a while ago, still in spirit surrounded by loved ones going through the different lives I might choose to reincarnate in to. We hit on this one and flipped through the pages together and as we got to the end I raised my hand and said "I can do this. I am perfect for this!" The story goes, I was so excited about this life I even stopped to chat with my mom while she was carrying me to let her know what my name was going to be. Similar to what my boys did with me.

WOW - what I ride I have chosen.

Sometimes someone is placed in front of me and when I talk to them, I can see it in their eyes, they think I am broken because of what I have gone through. I guess used to be, I was broken open, but I am not broken any longer. But it does remind me that I am sharper with my words than I used to be. I am quieter than I used to be and I am more cautious than I used to be. I am also stronger than I used to be. I take much less for granted than I used to and I love deeper than I ever have before. 


I just hope that I am not lying to myself. I don't want to be broken.




Friday, March 15, 2013

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. 

Monday, March 11, 2013

See me? See me?


My son, my amazing son......

I came home from seeing clients today and I saw that smile Nolan smiles only when he sees me walk in the door. Then he ran up to me looking at me directly in the eye, craning his head to make sure he makes eye contact with me and that I see him looking at me. It's like he is saying "See me! See me mom!"And then he does it another 4 or 5 times. Just to make sure that we connect.

And then - to make the night spectacular - we sang "head, shoulders, knees and toes" and young man Nolan pointed to his head. He pointed to his head. Let me say that again - he pointed to his head!!!!!

Last week Nolan and I saw our chiropractor. He took really well to the adjustments. I did too, thank goodness! And - his most recent NAET treatment was an extension to his treatment of yeast allergies, to include candida. Lisa, NAET practitioner, said she had never had to treat a toddler for candida. Imagine how hard is body has been working to fight it. And now that it is healed, I am so excited to think about just how much energy he will have to learn, grow and develop.

This mama is happy.  :0)

Finally I want to add a cute video about asperger syndrome. If you are cat lover or love someone on the autism spectrum this will make you smile. All Cats Have Asperger Syndrome.



Friday, March 8, 2013

Philosophy 101


I started my classes this Monday and it looks like I am going to be doing a LOT of writing. I thought it would be fun to share some of my work on my blog too.
This post has some of my response to my first assignment in Philosophy.


My philosophy of life is to love. I desire to see the love in my life, in this world. I believe that love is the driving force of the Universe; it is the glue that connects us. For me, love is another word for what many people call God. This love I speak of is love at it’s highest vibration, not "I love toast" but love as a verb. Love as a way that we choose to see the world. Love as a way we choose to approach others. Love as a way to change our world. “Be kind whenever possible. It is always possible.” Dalai Lama.

Love is my philosophy. Everything I do, say, think, believe is put up against what I understand Love to mean. If I am making a choice or taking an action that does not resonate as a loving choice I look to change it immediately. If I cannot change it immediately then I know there is an opportunity to grow my awareness and my depth so that I can take an action or make a choice that is in love. This love is not localized but universalized, to love others as myself and to love myself as others. I am responsible for me. I carry a specialized responsibility for my children. I am responsible for you. That is my philosophy of love in action. The love I speak of is not the attached form of human love, which is extremely important for humans, but the detached love for all and every thing. The love I speak of is the love that does not need to control or need to feel needed but simply allows. Sometimes seeing that love in the pain of our everyday lives is the most difficult and challenging thing to do but it has been my experience that it is always worth it.

As a human being who has seen ugliness and violence in life I have to believe that there is something deeper and more, something under the fear that being human brings. As I worked to heal the trauma of a violent rape, I was forced to go past hatred or victimhood, because regardless of how valid those feelings were, neither of them helped me heal or forgive. And healing and forgiving was the only way I could see to save myself from my own pain. It was in that process that that philosophy of love introduced itself to me. If I could go deeper than I have ever gone to see my trauma through the eyes of love I might, just might, make it out of the hole of rage and fear I was in. And yes, it was love that saved me. Not the love of someone else, human or otherwise, but my ability to see my experience with the eyes of love. That is what helped me to heal. I began to experience and understand the difference between the attached human love and the unattached Universal love. I reached this state through analyzing my thoughts, beliefs and perceptions. I forced myself to entertain concepts that seemed foreign to me. In the end I let go of what did not ring as true and kept what made sense to me and my experiences. And that is Love as a way of life. Love as a philosophy.






Friday, March 1, 2013

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