Thanksgiving

It was a good Thanksgiving. My mom cooked and we hosted 10 people, family and extended family. My sister flew in from the east coast. Nolan even took part in dinner by eating mashed potatoes, sweet potatoes and green beans. Go Nolan! It was the first holiday for my brother, J, without his wife, they are separated. But my niece and nephews were able to celebrate with us AND their mother's family since they are getting together this weekend.

I was so busy yesterday that I did not text, email or even post on facebook wishing a Happy Thanksgiving - that is really unusual for me.

But I did have time to sit down on the floor of Nolan's bedroom while he was napping and cry. I was looking at Eli's footprints yesterday and he had the exact same toes as Nolan. They each have/had a strange, kind of bent 2nd toe on both sides. When I become aware of things like that I wonder just how similar or different they may have been. I know it is no good to go down that road but sometimes I just don't want to stop myself....

I know I have so much to be thankful for and right now my biggest thanks is sleeping in his crib looking sweet and adorable in his little monkey blanket sleeper.

This is a day late but better late than never - I hope.

Let your gratitude be your Light. Let your Light shine as you celebrate Thanksgiving Day. Blessings to you all.

A Song and A Prayer

I cannot believe it has been over a month since I have posted! I guess moving will do that. I sat down and started to write 3 different posts and all the boxes and all that I needed to do stopped me from being able to focus. Still have boxes but most of them are in the garage so I can't see them right now. ;)

I just want to share a prayer I say with Nolan every night as I rock him before he goes to sleep. I have been doing it since he was in the NICU, after his brother died, so that he would always remember just how amazing and powerful he is, my earthbound star child. And then I added some extra to it when I was first diagnosed with thyroid cancer. Asking, praying, setting the intention that he would always have a legion of angels to support him and love him.

You are a child of the Universe
You are a child of God
The light of God shines down
Upon you
Through you
Radiates from you
You are a Being of Light
Your Eli, angels, guides and guardians
Surround you, support you, love you, guide you
Help you, hold you, heal you and keep you safe
And so it is.

There is also a song, that I made up, that I used to sing to him nightly. I started shortly after he came home from the hospital. Then over the past couple of months I stopped singing it since he didn't seem interested anymore. A couple of weeks ago I started singing it again and now when I do he smiles and laughs. He remembers. :0)

I love you
You love me
We're a loving family.
With our angel Eli watching over us
We'll be together for always.

November 8, 2011 we celebrated the one year anniversary of Nolan coming home to live. After 66 days in the hospital my baby boy was home.



Making it on a song and a prayer.

Cancer and Pregnancy and Infant Loss Awareness

I am part of an online support group for thyroid cancer patients/survivors and someone posted the letter below for others to share when they received less than supportive responses to their cancer diagnosis. I thought it was wonderful so I wanted to share.

I am so blessed to have such supportive people in my life. They showed up with such love with the TTTS diagnosis, Eli's death and my cancer diagnosis. Through the many support groups I am a part of I have found that there are many who have had very different experiences.

Dear Friend/Family Member:

Someone you care about has thyroid disease. You may not know much about thyroid problems, but I imagine, like many of us, you've heard things here and there. If anything, you probably associate the thyroid with weight problems, or think it's an excuse people use for being overweight. Or, you may already know someone else who's taking thyroid medication -- usually Synthroid -- and they seem to be doing fine, so you assume thyroid disease will be similar for your friend/family member.

There's so much more to thyroid disease, and while I can't cover it all in this letter, I'm going to try, briefly, to give you a sense of what your loved one is facing. So can I ask that you set aside for a few moments the information you do have about thyroid disease, to open your mind and heart?

The thyroid is our master gland of metabolism and energy. Every single body function that requires oxygen and energy -- basically, everything that goes on in our bodies! -- requires thyroid hormone in proper amounts. That means we need the proper balance of thyroid hormone in order to feel and live well. We need thyroid hormone to think clearly and remember things, to maintain a good mood, to grow hair and nails, to have basic energy to get through the day, to see well, to digest our food, to burn calories, to be fertile, to get pregnant and have a healthy baby, to have a good sex drive, and much, much more. In some ways, you can think about thyroid hormone as the gasoline that makes the car go. No gas, and there's no way to move forward.

Typically, a thyroid problem comes in one of several forms. Your loved one may be hyperthyroid...that means that the thyroid gland is overactive, and producing too much thyroid hormone. When the thyroid becomes overactive, you can think of it a bit like the gas pedal on the car is stuck, and the engine is flooding. If your loved one is going through hyperthyroidism, he or she may be feeling extremely anxious and nervous, with a rapidly beating heart, higher blood pressure, and even palpitations. Some people describe the sensation as like their heart is beating so hard and loud everyone around them can even see it and hear it! They may be hungry and thirsty all the time, suffering from diarrhea even, and losing weight. Others may even be wondering, wrongly, if your loved one's rapid weight loss is due to an eating disorder or some sort of illness like cancer or AIDS. His or her eyes may be sore, sensitive, gritty and irritated, and vision can even become blurry. Sleep may be difficult or impossible, and lack of sleep combined with the body zooming along at 100 miles an hour can cause extreme exhaustion and muscle weakness. Frankly, people who are in the throes of hyperthyroidism have told me that they feel and look like someone who is strung out on drugs, or who has had 20 cups of coffee after not sleeping for a week. With heart pounding, and all body systems going full tilt, your jittery, stressed-out hyperthyroid loved one may even feel like he or she is losing it, ready to fall apart at any moment.

If your loved one is hypothyroid, they are facing different challenges. Hypothyroidism means the thyroid is underactive, and not producing enough of the energy and oxygen-delivering thyroid hormone. This is like trying to get somewhere with barely enough gas and feet that can't reach the gas pedal. If your loved one is hypothyroid, he or she may be feeling sluggish and tired, and exhausted all the time. Think about the worst flu you've ever had, and how tired, and achy and exhausted you felt. Now imagine waking up every day feeling like that, but having to get up, go to work/school and take care of yourself and others feeling that way. Depression -- or feeling blue -- is common, as are memory problems and being fuzzy-brained -- we patients call it "brain fog." Your loved one may look in a mirror and not recognize herself (and I say herself here, because the vast majority of thyroid patients in general are women -- thyroid problems do happen in men, but are seven to ten times more common in women.) Because when she looks in the mirror, she sees the outer half of her eyebrows are thin or missing, her hair is thin, dry, coarse and falling out, her face and eyelids are puffy, her face is bloated and puffy, and she may have gained weight, despite eating less and working out more than everyone else around her. With hypothyroidism, anything and everything can be slow, even digestion, which can cause constipation. For women, periods can be worse, and come more often than before. Menopause can be worse, and come earlier than for other women. And after pregnancy, hypothyroidism can worsen postpartum fatigue and depression, and make breastfeeding difficult or impossible. And then there's that issue of weight gain. Your loved one may be following the most rigorous and healthy diet and exercise program, and yet be unable to lose weight. He or she might even be gaining weight on that program.

If your loved one has thyroid cancer, they have an entirely different challenge. The majority of thyroid cancers are considered highly treatable and survivable, so doctors and others often cavalierly refer to thyroid cancer as "the good cancer." But the reality is, no cancer is "good," and someone who has thyroid cancer has cancer, "the big C." Cancer as a concept is frightening, and raises fears and concerns. Someone with thyroid cancer initially may have few, if any, symptoms. In some cases, however, they may have hypothyroid, hyperthyroid, or a combination of symptoms of a thyroid imbalance. Most thyroid cancer patients require surgery to remove the thyroid -- and this can be daunting, including the idea of a several-inch incision in the neck and resulting scar. After surgery, many thyroid cancer patients will need to have followup radioactive iodine treatment to ensure that all the cancerous tissue was removed, and it can be many weeks after surgery before a thyroid cancer patient -- who by that point is typically quite hypothyroid -- can start thyroid medication to again get lifesaving thyroid hormone they need. And the thyroid cancer patient in your life will require lifetime of medical treatment for the resulting hypothyroidism, along with periodic -- and sometimes physically challenging -- follow-ups and scans to monitor for a recurrence of the cancer.
These are just a few of the conditions that can affect thyroid patients. There are autoimmune diseases -- Graves' disease and Hashimoto's -- that can be at the root of hyperthyroidism and hypothyroidism. Sometimes people develop a goiter -- an enlarged thyroid -- or benign nodules that cause symptoms. Sometimes a temporary infection causes thyroiditis. And again, these problems can be difficult to pinpoint, misdiagnosed as everything under the sign, and even when diagnosed, poorly treated.

So what many thyroid patients have in common is living in a world that overlooks, downplays, poorly treats -- and sometimes even makes fun of -- their condition.

Magazine articles, books by doctors, patients brochures in doctors offices -- and doctors themselves -- insist simplistically that thyroid disease is "easy to diagnose, easy to treat" even though patients know that this is far from the truth. As for "easy to diagnose," your loved one may have even struggled to get diagnosed -- to get taken seriously -- in the first place. Doctors regularly misdiagnose hyperthyroid patients as having an eating or anxiety disorder, and hypothyroid patients as having stress, depression, PMS, or menopause.

Worse yet are the truly unsympathetic physicians that we all too frequently encounter in thyroid care. Like the marathon runner with hypothyroidism who was in training, on a strict diet, and still gaining weight and was told by her doctor that she had "fork in mouth disease." Or the endocrinologists who tell patients, "Well, you should be GLAD, you know, because you have the GOOD cancer!" Or the doctor who diagnosed a woman with hyperthyroidism by clapping his hands together loudly behind her head, chortling: "Oh, I can always tell you hypers, because you practically jump off the examining table when I do that!"

There are advertisements and comedians who use "thyroid problem" as the not-so-secret code to describe someone who is fat. And there's a whole realm of scam artists out there trying to sell us cockamamie Thyro-this and Thyro-that "cures" for thyroid disease that in many cases can make things a whole lot worse -- or at best, not help at all.

Even Oprah admitted she had a thyroid problem, then claimed it went away, then said she had it but it wasn't an excuse for her weight gain, then decided not to get treatment, and continues to struggle with her health issues.

And perhaps saddest of all, there are friends and relatives who say "I don't buy this thyroid disease thing, it's just an excuse for not losing weight" or "Thyroid? Hah! She's just lazy!" Or, "Why can't he just get OVER it and get back to normal?"

Husbands criticize their wives for gaining weight. Teenagers whisper behind a friend's back about anorexia. Coworkers complain that their colleague is "lazy."

Once we're diagnosed, treatment is not an easy fix for many thyroid patients. Doctors try to rush hyperthyroid patients into permanently disabling the thyroid with a radioactive treatment that will make them hypothyroid for life. Many doctors believe there is only one medication to treat hypothyroidism -- a medication that does not resolve symptoms for all patients. When patients learn about other available options, doctors may stonewall, refuse additional treatments, or push antidepressants, cholesterol medications, weight loss pills and more, instead of addressing the thyroid issues. The conventional medical establishment believes that treatment for thyroid problems is one-size-fits-all. This cavalier attitude means that many thyroid patients struggle for years to live and feel well, despite being diagnosed and "treated."

I'm here to ask you -- in a world where thyroid patients are disregarded, overlooked, misdiagnosed, abused, exploited, mocked, and ignored -- to be the person who truly "gets it" for the thyroid patient in your life. Be the person who understands that while thyroid disease may not be visible, it is causing your friend or loved one to suffer. Be the person who understands that even though celebrities aren't talking about thyroid disease, and sports figures aren't wearing bracelets to promote thyroid awareness, that this is a genuine, difficult, and life-changing diagnosis.

Be the person who opens mind and heart to the thyroid patients in your life. Be the person who listens, and learns about the struggles and challenges. Be the person who empowers the thyroid patient in your life, by helping him or her do as much as possible to improve health. Be the person to help find doctors and practitioners who do not view your friend or relative as a cookie-cutter patient on a thyroid assembly line. Be the person who helps the thyroid patient in your life to maintain balance-- to help find time for rest, for exercise, for stress reduction, for self-care, for proper nutrition, for fun!

Live well,

Mary Shomon
Thyroid Patient Advocate

________________________________________________________

October 15th also is Pregnancy and Infant Loss awareness day. If you know of anyone who lost their baby I invite you to take a moment tomorrow send out a prayer or love and light to those who died much too young and those who grieve them.

Love to you~

Tired

Just a short post to say hi.
Hi!
I have been tired recently. I think maybe it is the thyroid medication. That it is not enough... I go back and have my blood work in a couple of weeks. I would not be surprised if we need to up the dosage. I know too low of a dosage can slow everything down. I went to the grocery store 4 times today AND still did not remember to get the juice for my son and honey for a health tea. Four times! Who goes to the grocery store 4 times and still forgets things? That would be me. I do...... I have my sense of humor and was laughing about it earlier but now I am so tired the computer screen is swinging back and forth in front of me..... I will go to bed soon.

I am excited though... Even if it doesn't sound like it. My mom and I found a house to move into at the end of the month. It is adorable on the outside. Great outside space just in time for perfect outside weather in AZ. It will be a good move - once the move happens. Nolan will have his own room. I am excited to decorate it for him! We will see if he actually sleeps in it. lol

I made another donation in Eli's name today. It felt right. I will continue to do it. Keeps him alive and gives his short earth life even more meaning. It was only a couple of dollars but it made me smile and feel him closer to me. It was as if I was saying "Look at me baby. I want to make you proud."

I hit 13 months since the boys were born. I had been lighting a candle from the 4th to the 15th every month in memory of Eli. It was comforting. I decided that after the boys first birthday last month I would only do it in September every year. Just a way to show that I have been making progress on my grief. (I don't know who I was going to show...) I miss his candle being lit in my room at night. I don't have anything to prove, I remind myself. If I am not ready then I am not ready.

And so I think I will go to sleep with Nolan breathing quietly in his crib next to me and Eli's candle lit.

My Journey to Motherhood

I have been thinking about writing about this for awhile. It has been a journey that is for sure.

Teenage years
I remember thinking that I never really wanted to get pregnant and carry a baby. I didn't want to mess up my body so I thought one of two things would be great. Either I would adopt or I would have twins, so I would only have to be pregnant once, of course. I also remember thinking that it would be awhile yet because, to quote myself, "I will not pass the garbage of my childhood on to my child." I knew I had to heal my childhood before having a child. A rather definite statement for a 16 +/- girl to say but I remember saying it and I remember meaning it. Physically I was having extreme cramping during my periods and actually overdosed on midol one time. My mom had to run me to the emergency room that night. Later I went on birth control pills to help with the pain. They worked.

First love
I met and was wildly in love with a young airman in the Airforce. He was my first "adult" love. I was 17 when we met but out of high school. He was 18 and had just been assigned the base near my home. We were set up by friends. We adored each other and after a couple of years he wanted to marry me. He wanted us to have a home and have babies. I couldn't do it. I just couldn't. It wasn't because I didn't love him. It was because I could not see myself living the life he wanted. I had too much exploring and living to do as a single woman. So about a year after that we broke up. It tore my heart out. We remained friends. He is a very good man and I often wonder if anyone will love me again like he did.

Marriage
I got married when I was 23, surprising myself and probably almost everyone who knew me. He was a good guy but we were not a good married couple. After about a year and half of marriage we decided to stop using birth control and get pregnant. We tried it for a year - nothing. I guess it was meant to be since we ended up divorcing about a year later. I still think we could have co-parented well together. During this time I also was diagnosed with endometreosis and ovarian cysts, probably what had caused the painful periods in my teenage years. I had laser surgery to burn off the endometreosis. Afterwards the doctor wanted me to go on hormones to simulate menopause. Umm... no. I decided to see an ND and used natural, homeopathic and acupuncture to help my healing instead.

Single and having fun
So from about 27-35 I was single and had fun. Still believing that I would find the man that I wanted to marry, who wanted to marry me and we would create some type of family. During that time I got pregnant. I was almost 30. I was in love with the father. I miscarried very early, around 6 weeks. Just enough time for me to know and lose it in one fell swoop. I remained friends with him for years after we broke up. Sometimes we would talk about how old the baby would have been and what he/she would have looked like.

Thirty five
At 35 it hit. I was dating a man who did not want and could not have children. What was I to do? Leave a man I cared about or decide that maybe I just was not meant to have my own children. I had 1 niece and 2 nephews then. Maybe that was to be it. I would be the cool, amazing, rockin' auntie. This was a very tough time for me. I seriously wondered if I could even get pregnant again, due to the medical issues earlier in my life, and if I did could I even carry the baby to birth? The likely hood of the husband I had been waiting for to come along I was also seriously beginning to question. Physically I was having problems with my thyroid (low) and doing MANY different holistic, alternative and natural healing to help it work.

March 24, 2010
I find out I am pregnant. Not planned. Not with the wonderful husband that I had been waiting for but with a man who I had just started to date. I was just beginning to understand how different he and I were and that it was not going to work out. So I decided on March 17th that I was going to end it with him and a week later I found out I was pregnant. SHOCK! At 42 years old I found myself, against all odds, pregnant. But not with the husband I had always wanted. Then on May 20th I found out I was carrying twins. I was continually asked by every new doctor if it was thru IV or fertility treatments. Everyone, including me, was shocked that I was pregnant and with twins. I was told how lucky I was to be pregnant and I felt it - lucky. And then TTTS reared it's ugly head....

The future
I understand as I write this, many will believe me to be insane. I will be 44 years old in 6 months. I question it myself, whenever I think it
AND
I would like to have another child. Nolan has a brother but Eli is not here on earth with him. I would like to give him a sibling to grow up with.
AND
I definitely do not want to do this one alone. I want a partner to share it with.
So - the Universe is really going to have to do some serious aligning for this one to happen.... It has happened before....

Who knows what will come. I could have never guessed that my journey to motherhood would look anything like it has. The possibilities are endless and so is a mother's love. I feel like I have more mother's love to share.

We shall see.....

I Did It! I Felt it.

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

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

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

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

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

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

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

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

Powder - click to watch

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

"Do not stand at my grave and weep,

I am not there; I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on snow,

I am the sun on ripened grain,

I am the gentle autumn rain.

When you awaken in the morning’s hush

I am the swift uplifting rush

Of quiet birds in circling flight.

I am the soft starlight at night.

Do not stand at my grave and cry,

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

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

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

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

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

First Birthdays and Angelversaries

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

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

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

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

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



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

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