Tuesday, December 31, 2013

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.

Thursday, September 5, 2013

The Boy's Third Birthday

It’s my boys’ third birthday today and it’s time for me to write my letter to both of them and let them know just how amazing they both are and what I have learned from them this year.

Nolan – my sweet amazing survivor. This past year the word autism came into our vocabulary. At first I was advised that you were “at risk for autism” and through a number of appointments, evaluations, questions that was changed to a full diagnosis of autism in May. One of the hardest things for me in this process was to talk about what you could not or did not do. That was the absolute opposite of how I choose to see our lives, your life. I choose to live life in the terms of what you can do, what you have overcome and just how accomplished, bright and sparkly you are.  And - being the mother I also know that the world, as it is now, needs that diagnosis so that I can get the extra support, guidance and love you deserve to help you to become the amazing person you already are. So I allow the diagnosis but I will never allow it to discount you, your abilities and your light. I have seen you grow in your understanding of the rules of the world as you gain more experience and trust in this place you have landed for this lifetime. I have watched you reach out to your teachers and therapists and have seen their eyes light up with excitement and joy at your continued growth and development. Your smile sets hearts afire, truly it does. I have seen it. I have felt it. You started preschool this year. You started playing on playground equipment. You went down the slide! Your future is unbound, full potential, joy, excitement, growth and success. This I know to be true. I promise you that anyone who knows you or knows of you will also know that this path that you are on has an ending that is beyond anything we can imagine. I love you my beautiful boy.

Birthday morning before school.

Eli – my shining star. First I must say that I know you are close to us. I know that you hear and see Nolan when he looks at your picture and says “E”, or when he sings “Eli, Eli, Eli” for no apparent reason. I know you are the reason and you are very apparent to me. In February John left this earth unexpectedly too. I know that you were there to meet him after he transitioned. The two of you are connected in my heart. Please tell him I love him and give him a hug from Nolan and I. It has been the through the wisdom that I have gained in being your mother that I have the understanding to offer support to my clients who are looking for connection with their loved ones who have transitioned. It is the depths of my grief over your death that has opened me up and allowed me to support others in the depths of their grief. I have seen your hello’s to me in the Eli skies; the sunlight streaming through the clouds in lines of light, numerous times this past year. I finally received the Molly Bear I requested in your honor. He is beautiful and brings a smile to my face. Also, finally, I put together and ordered your memory book from Shutterfly. I smiled and cried as I created it. I smiled and cried when I opened it. I smile and cry when I remember you. I love you my sweet son. I miss you. I know that I will see you again and until then I promise to continue to care for your brother to the best of my ability and to use the love I have for you to help and love others. Happy birthday my Eli.

Nolan kissing our Eli Bear. He has just started doing this recently.

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.

Friday, February 1, 2013

Love in a Walk to the Mailbox

I loved walking to the mailbox with my little boy this evening. The Arizona sunset. The air was slightly cool. My little boy wouldn't walk out of the front gate without holding my hand. As I was closing the gate his little hand was reaching up searching out my bigger one. This walk to the mailbox was a perfect 5 minutes of love.

Wednesday, January 2, 2013

Happy 2013!

Happy 2013 to everyone!

I wish you
Beauty and Truth
Clarity and Kindness
Grace and Strength
Love and Light

The winds of change are already starting up for 2013. Keeping my nose up, turning in to the wind, flying fast and guided by the Light and Love.

I found an amazing new facebook page in support of parents of children with autism. Autism Sparkles. This quote is taken from a blog post by the owner of the page 

"After that day, I decided autism might just be the most scary brilliant thing I’d ever come to know in my life.  There could be so much radiance sparkling just under the surface if you looked closely.  I vowed right then we would not seal our fate because of the lack of expectation others held for him  and I would never again hand him over to the dark side of autism that gave up before it ever got started." 

I knew this page was for me as soon as I saw it.

And finally this
While the storm may very well be "the dark night of our soul" and the most difficult thing we will ever face;
if we open ourselves up
allow ourselves to be torn asunder 
and then get up with the light to move forward again

This storm could be one of the most amazing gifts of our lives.

Love <3