Blessing

You are a child of the Universe.
You are a child of God.
The Light of God shines down upon you
through you
and radiates from you.
You are a being of Light
Your Angels and Beings of the Highest Divine Light
Surround you, comfort you, hold you, guide you, love you, support you and keep you safe.
And so it is.

I started repeating this blessing to Nolan while he was still in the NICU shortly after Eli's death. It helped me to remember that he was always watched over.
It is also important that I make sure that Nolan never forgets who he REALLY is. That he really is all of the above. We all are.

July 12, 2010

Yes - you read that title right July 12, 2010. That is when my happy twin pregnancy bubble began to burst..... That was the day that I first heard the term Twin to Twin Transfusion Syndrome - another acronym.... I had already experienced, last year, how a seemingly innocent combination of letters like CDH (Congenital Diaphragmatic Hernia) can bring great heartache by experiencing my nephew's birth and death in May but now another acronym was being attached to my boys and their lives - TTTS.

Recently I have been thinking back to when I was pregnant with the boys last year. I remember how strangers would cry when they talked to me about my boys. This was well before TTTS shoved it's way into my life. I always thought it was odd that strangers would cry about a very happy experience. They thought it was odd too and would comment that they did not know why they were crying.... Maybe because somehow, someway I was already carrying the energy of a mother who would lose one of her children? I don't know but I do know that it WAS odd....

Today was an emotional day because of the date tomorrow, how it changed my life and because my brother and sister in law had their level 2 ultra sound today for their rainbow baby. That was when they learned of their first son's complications, just like me. I so want a healthy, happy baby for them. They learned today that all looks good and that they are having another boy! Yay!

So with my thoughts going back a year ago I wanted to copy my blog post last year about July 12, 2010

"July 12^th, the big day when I got to find out if the babies were boys or girls. The opinions were split 70/30 in favor of girls. That was my guess too. 70% of us were wrong. They are boys! Very obviously boys as both of them showed off their “boy parts”. Two active, inquisitive little boys, oh my….

But that was not the only news I got. This ultra sound was a full one with the measuring of everything on each baby. They found some differences in size and in the amount of fluid in each baby’s sac. All of these things pointed to Twin to Twin Transfusion Syndrome, TTTS. Of course I had never heard of such a thing. It is fairly rare. It only happens about 10% of all identical twin pregnancies, around 2000-3000 a year. I was supposed to travel to Portland to visit friends and family later that week. When I asked the doctor about going, her response was. “If you miscarry you will do it whether you are here or there so go and enjoy yourself.” Not a response I was impressed by. I chose not to go…. The doctor also recommended that I get an amniocentesis done to check for genetic issues, which I refused. She did recommend a perinatalogist group for me to follow up with.

I went home shaken in shock and fear, getting on the internet I found the www.tttsfoundation.org. I read everything, emailed the foundation and immediately started on the recommended diet of extra protein and iron by drinking 2 Boosts drinks a day. I heard back from the foundation and they recommended that I meet with Dr. John Elliott if I could. He was on the TTTS board and actually had come up with the first procedure to help with the syndrome in the 80’s. Before he introduced the procedure of amnio reduction the mortality rate was 90%. His introduction of this procedure dropped it about 30%. As it turned out Dr Elliott was a doctor with the group I was referred to. I made an appt with him for a couple of days later.

I went in for my appt with Dr Elliott, getting another complete ultra sound and a full sit down discussion on TTTS. Dr Elliott choose to NOT diagnose the boys with TTTS but he did recommend weekly ultra sounds to track their progress because the syndrome can move and change quickly….

So that was it. I found out my babies were boys and I got to enjoy that news for approximately 10 minutes before the words twin to twin transfusion syndrome were said. Well, at least one of the expert doctors on this was in town and was NOT diagnosing them yet. This had to be good, right?"

I love you my darlings Nolan and Eli.

I miss you my sweet Eli.

Body memory - Soul healing

Last week I saw a talented cranial sacral therapy (CST) practitioner. At the bottom of my post I have a link and some info on CST if you are interested. I have been receiving this therapy on and off for about 7 years and I have always received immense healing from every session. I had been having terrible headaches due to, I don't know, probably everything in my life this past year.....
Anyway, I had been wanting a session but the person I used to see moved away. So what happened? (I love how this works) A couple of months ago I mentioned to one of my clients that she may want to check into this type of therapy to help with her migraines. She had done many different traditional therapies including chiropractor and physical therapy to no avail. She found a CST practitioner on her own and saw her a couple of times then she came to see me again. I was amazed with how calm and even younger that she looked. She told me she found a CST practitioner and loves the work. She said her migraines were lessening in intensity and amount. She gave me her card.

I sat on it for awhile then I finally called. The session was powerful. To start, we chatted for a couple of minutes. She knew I had an infant son but I did not talk of his brother or our journey. She moved through the protocol of the therapy. I felt myself begin to relax. At one point I felt anger rise within me and I became aware of the anger I felt towards my body because it created an unsafe environment for my sons and could not carry them long enough to keep them safe after birth. I wasn't aware that I had been feeling this. The wonderful thing was as soon as I became aware of the feelings I felt them being pulling from my body. I let those feelings go.

As she continued the session she came to the place on my right side just below my rib cage where Eli had sat for much of the pregnancy. As soon as she place her fingers there I began to cry. While it did not surprise me that I would cry I was surprised by the depth of the grief that was released. As I laid there quietly sobbing I heard her say "I'm sorry." and I heard her tears. She remained with me that way for many minutes until I stopped. We were quiet until the session was done.

Afterwards I shared the story of my sons only to learn that she used to be a midwife and had experienced the death of a clients' baby. She was not a stranger to infant loss. It was one of the most nuturing, gentle, receptive, loving sessions I had ever experienced. I so recommend this type of therapy for anyone who is experiencing anxiety, grief, stress, PTSD.

And finally Monday was Nolan's first 4th of July.
Last year at this time I was pregnant, still innocent of TTTS and the outcome of it on the lives of me and my boys.....
This year Nolan saw sparklers for the first time.


I am blessed.


Here is some info on CST - Cranial Sacral Therapy
http://upledger.com/

CST was pioneered and developed by osteopathic physician John E. Upledger following extensive scientific studies from 1975 to 1983 at Michigan State University, where he served as a clinical researcher and Professor of Biomechanics.

CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.

Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system.

By complementing the body's natural healing processes, CST is increasingly used as a preventive health measure for its ability to bolster resistance to disease, and is effective for a wide range of medical problems associated with pain and dysfunction, including:

• Migraine Headaches
• Chronic Neck and Back Pain
• Motor-Coordination Impairments
• Colic
• Autism
• Central Nervous System Disorders
• Orthopedic Problems
• Traumatic Brain and Spinal Cord Injuries
• Scoliosis
• Infantile Disorders
• Learning Disabilities
• Chronic Fatigue
• Emotional Difficulties
• Stress and Tension-Related Problems
• Fibromyalgia and other Connective-Tissue Disorders
• Temporomandibular Joint Syndrome (TMJ)
• Neurovascular or Immune Disorders
• Post-Traumatic Stress Disorder
• Post-Surgical Dysfunction

Endless - Timeless - Always Alive

I have been focusing on healing my grief. This experience is causing me to look deeper into what I believe, what I have taught and definitely what I say to myself, my clients, everyone in my life.

There are some things I have begun to understand. The popular new age thought process of "you can change anything" and "have anything you want" just does not ring as true to me now. I understand how it can be empowering to someone who believes they do not have the ability to change their circumstance or alter their world and I believe in the power and the truth of that. AND there are somethings that I as a human being or even a spiritual being can not change or have, especially when it has to do with the experience of another human being or the evolution of another spiritual being. The death of my son has taught me this. In this moment in time the one thing I would change in my life is to have Eli at home with Nolan and I but that was not meant to be and I cannot change that. I do not get what I want in this instance. So where do I go with what I used to believe and what is my deeper understanding now?

It is my knowing that Eli came to this earth in the little form he took to play a very large part in my life, Nolan's life and in the lives of those who knew and loved him BUT he also came for himself, for his short human experience and for his own soul evolution. Regardless of how much I prayed, cried, meditated, visualized, supported and protected his body and his life I could not change his own soul evolution because it was not about me. In a way it never was but there can be something in the experience for me. I was given the gift of his life and his evolution and though it was so much shorter than I wanted it to be it is HIS life and HIS evolution, not mine. He may have come into this world in a 2lb 4oz body but he was a fully developed part of divinity, as we all are, and had his own path to experience. Regardless of anything I used to believe I now know that we cannot have anything we want or change anything we desire to.

So, where does that leave me? When we are part of an experience that we cannot change or have what we desire what do we do next? This is what I have been working on
- Changing my understanding, perception of the experience of Eli's death - I ALWAYS, in any situation, have the opportunity to decide/create what an experience means to me. Some use the term, learning but I just don't know about thinking about these things as lessons - and this comes from someone who loves to learn! The word experiences just feels better to me so that is what I go with. It was Eli's life, his experience and because it occurred and touched mine it is also my life and my experience.
- Understanding that there are simply some things that we do not get to have or change creates a depth of compassion, for myself and for others that is new in all it's beauty.
- Any guilt of not being "strong" enough or "spiritual" enough to manifest my desires dissipates. Talk to anyone who was in the position of being a decision maker concerning someone's health and they will tell you about the "what if's" that have run through their head, especially if the outcome was not what they so badly wanted.
- And the most important piece - As I move through all of this there is one thing that rings clearly..... It is that as I go through this process Eli lives within me and outside of me. As I come to awareness of all of this I inherently change how I work with my clients and how I am with those in my life. Eli lives in that too. When this process is complete the next step, whatever that may be, Eli will also live in that. This makes him endless, timeless and always alive. Thank you for helping me to understand that.

I will end with the quote that I saw this morning that started this post.

"This moment contains all moments." - C.S. Lewis
All that has happened is held in this moment.
All that will happen is a seed in this moment. - Addition by me.

Another TTTS Angel

I got word yesterday morning that two TTTS survivor and angels were born as another TTTS survivor died. I did not really know the mother of the survivor who lost her fight with TTTS, she was a member of my support group. She had lost one of girls in utero and gave birth to her survivor 6 weeks ago, at 28 weeks gestation (one week more than my boys). Her little fighter survived heart surgery, breathing problems, collapsed lung and finally pneumonia ended her life. She never left the NICU. My heart breaks for her family in dealing with the death of both of their babies. Blessings out to all of them.

Nolan had another follow up appt with the surgeon who did his skull surgery. As always, Dr S was thrilled with how Nolan's skull has shaped up but more importantly, he is a doctor of neurology and so when he mentions how impressed and amazed with how Nolan is developing it makes me happy. Of course I know that he has his brother to support him, help him and love him from the other side. Nolan is just over the 50% mark in growth for babies who really are 9 months old. He is off the charts for a baby born at 6 months (his adjusted age). Dr S just laughed and smiled with Nolan and said how wonderful it was to see such a healthy happy baby. Since Nolan is on state insurance he has to go to CRS to see Dr S. CRS stands for Children's Rehabilitative Services. It is a clinic set up to see children who are facing very serious health challenges. Doctors from around the city come in to see their state insurance patients. It definitely is not like a pediatrician's office where the majority of the babies are healthy. CRS is a clinic for very sick children. Whenever I see a child with health challenges I try to catch their eye to connect with them. I see the light that they truly are and somehow I want them to know that I see them, the real them, not just the body they are in.

I just wanted to mention that I did not join the mama and me yoga class. As it worked out Nolan had a doctor's appt at the exact time of the yoga class for the past three weeks. There is another option out there, I know it.

For those of you who do not know. I am 11 days into my 30 Day Muchness Challenge. A lot of my daily experiences are being posted there. Please check it out. :)

http://www.findingmymuchness.com/2011/06/piperlynes-30-days-of-muchness-day-11/

From Too Much To Muchness

What do you do when you find out you are going to be a mom for the first time, just when you had given up the belief you might still get to be a mom at 42, and are single, self employed and not in love with the baby’s father? – Jump up and down for joy and trust that this gift was given to you for a reason. - MUCH

What do you do when you find out that the one baby you are expecting is actually identical twins? – Cry your eyes out in terror and joy and then call your mom to tell her so she can scream and laugh and cry in joy and shock. – TWO MUCH

What do you do when you find out that your miracle babies are identical boys and could possibly be facing a challenge called Twin to Twin Transfusion Syndrome (TTTS)? – Go home and Google it only to become terrified at what it could mean to the beautiful boys you carry. Tell friends and family who are already reeling from the death of one baby in the family. Become stiff with fear as the practical survival instinct kicks in and you learn EVERYTHING you can and start changing things in how you live 5 hours after the possible diagnosis. – too much

What do you do when you are told your babies are officially diagnosed with TTTS and it seems like they are progressing rapidly, knowing that without some type of intervention there is barely a 10% chance that either will survive? – Fly to Houston on two days notice for in utero laser surgery, borrowing money from friends and family, not knowing if the insurance will actually over the cost of the surgery. Have the surgery and learn 24 hours later that you still have two tiny little heartbeats inside of you and hear the surgeon call the surgery a success. – TOO TWO MUCH

What do you do 3 weeks after the successful surgery and feeling both babies move and kick and hiccup and grow inside of you, your water breaks much too early and you drive yourself to the hospital, the doctors check the babies, they still look good, and put you on a cocktail of drugs to keep the babies safe, promote their lung development and stave off any infection? – You bring your babies’ teddy bears to the hospital to keep them with you at all times. Visualize healthy babies with a bond of love so strong as to keep everyone safe and growing and spend your 10 days on hospital bed rest hiding from everyone so that you can focus EVERYTHING on the health and wellbeing of your little ones. – too too much

What do you do when you are rushed to the OR for an emergency c-section because one of your babies is in distress with a heart rate dropping to 15 with every contraction and give birth to two tiny, perfect little boys 13 weeks early who are rushed off to the NICU for care? – Give thanks for every single blessing you have been lucky enough to receive. – TWO TWO MUCH

What do you do when after 9 days of life one of your perfect little boys contracts an infection that takes over his body so quickly that he dies less than 36 hours later and then you have to hold a service for him while his brother is fighting in the NICU to grow and thrive? - Go numb, keep breathing, eat sometimes, sleep every so often, cling to the little boy still alive and alone without his brother and cry until there are no more tears only to cry again until you can’t breathe. – so much more than anyone should have to experience and I know too many who have

What do you do nine months later with a thriving nine month old beautiful boy who has made it through painful reflux, apnea events at home and a surgery on his skull? – Love, rejoice and celebrate the beautiful life of your surviving son while you honor, remember and sometimes still cry your eyes out over the son you lost. Know that your one heart has split into three equal hearts, one still in your body, one bursting with joy in your survivor’s body and one torn apart in grief with your angel. Embrace the life you have while you find reason and sense in the whole experience. Talk to your angel son, sing songs to your survivor about his brother, light candles, tell their story and live. – FIND MY MUCHNESS

This is my introduction to my upcoming experience of my 30 Days of Finding My Muchness. I will be starting on Wednesday June 15^th in honor of my ninth month without my angel. Please visit this wonderful website www.findingmymuchness.com to follow my journey to hope and healing.

I have also created my own project of Rediscovering Your Light on Facebook in support of anyone finding themselves in darkness or grief, for any reason, to reconnect with the love and light in themselves and their life. I would love it if you would join me there too.

Peace~

Piperlyne

Yoga and Another Baby Eli

I have begun to become aware of something - just how isolated I have become. I remember when I was pregnant and learned about the boys. I signed up for a number of local moms of multiple groups. I had it all planned in my head how we would get out and around and how wonderful it would be to meet other moms with twins just like me! I was looking forward to connecting with all these people then I learned about TTTS and the rest of 2010 was, as they say, history.

Fast forward to now. I am connected with a special group of moms - moms who have lost their baby(ies) to TTTS. These women are amazing and I am blessed that I have them as cyber sisters. I have a sisterhood with my sister in law who also had her baby die after birth last year. She has been a big support to me. I hope I have been for her.

The rest of my life goes like this
- I go to my "office" for 20 hours a week and see my clients. Many of them are regulars but they are my clients. They are not coming to see me to hear about my life. They are paying me to talk about theirs.
- I have a couple of friends there too but depending on how busy we all are we may or may not get to talk much.
- I am teaching at SWIHA and work with wonderful groups of students but once again I am the teacher and it is about them, not about me.
- Nolan's doctor appointments - he often has a couple a week but those are about/for Nolan.
- I work on my Rediscovering Your Light project, by myself on line.

I talked to a friend of mine who is a massage therapist about making an appointment or two to see her. She is very talented and after her massages I feel relaxed and very nurtured. I miss being touched. I am so affectionate with Nolan and he does give me his special Nolan kisses, :D, which I love and it is not the same. It is not his responsibility to take care of or give to me. It is my responsibility and joy to do that for him.

Don't get me wrong I am not complaining. Everything I do in my life has great meaning to me AND I am feeling disconnected. I had been thinking about this recently and was really feeling it when I spoke with a woman with a baby who sat down next to Nolan and I today.

I was out with Nolan walking around one of the outside malls near us. We decided to take a seat and watch the kids play. A woman asked if she and her son could sit next to us. I said yes. She started to chat and I learned that her 7 month old son is named Eli. The first baby Eli I have met, other than mine. I held it together then but when she started asking other questions my whole story just fell out and I started to cry. She was very sweet and kind as her eyes welled up with tears. We chatted for a little more and she asked me if I did any activities with Nolan. I said no. She said she was a member of a couple of different mom's groups and one of them was offering a mommy and me yoga class every Friday morning starting next week. She invited Nolan and I to join. Every moment shared with her seemed to be filled with divine intervention. Even though I am sitting here crying as I type this I can't help but feel that Eli is telling me it's okay, all is good with him. It's like he was answering the thoughts going through my head by bringing this woman to come sit next to me and talk to me. That part makes my heart smile. I haven't talked to a stranger, other to say thank you, excuse me or to answer a question about Nolan in a long time. And I probably would not have talk with her if her son hadn't been named Eli. My chat with the woman who had a baby boy with the same name as my angel helped me to become aware of this. I have few friends with living babies. If I join this yoga class, can I do this? Find the joy and pleasure in it? And not be that sad mom who had one of her twins die?

I don't know.

Tomorrow is their nine month birthday.
Hello Eli my love.
Happy Nine months my darling Nolan.