Monday, December 31, 2012

A Month of Small Celebrations - December 31


Small Celebrations

It is the last day of 2012 and the last day of my small celebrations month.  When I started I was really worried that I would not be able to do this. That it would be too hard or I would flake out. But I didn't. Not only that but it was pretty easy. Some days were less exciting than others but that is life isn't it?

Tonight I decided to share something I learned on December 19th. Nolan had his first appointment with a developmental pediatrician at Phoenix Children's Hospital on the 19th. It was at this appointment where I heard the nurse practitioner say those words I did not want to hear. "Nolan is 'at risk' for Autism". I can't say I was surprised or shocked but it would be a lie to say that it didn't hurt my heart. Ever since he started his therapies in June and I started learning about sensory processing disorders I started reading about Autism. 'At risk" for Autism is a common term used for children under three years of age, kind of a pre-diagnosis so that the child can qualify for therapies like ABA (Applied Behavior Analysis) and music therapy through state and federally funded organizations. The recommendation for Nolan is to continue his weekly speech and occupational therapies and add weekly music therapy and 25 hours a week of in home ABA therapy. Yes, 25 hours a week. ABA has been used to support people diagnosed with Autism since the 1960's and has gained wide support in the past 10 years. Early intervention and intensive focus is the key. So now there are more acronyms to learn, more evaluations to schedule and more applications to fill out.

Like I mentioned before, when Amber (the nurse practitioner) first said the Autism word I was hurt. I didn't cry. I don't think I even sighed. It wasn't the first time that it was just me when I was given difficult information. I have practice at that. I close up and wrap myself in protection until I can take the time I need to process. Then I came home and started telling friends and family, still in shock. And then just a couple of nights ago I cried. Not because Nolan was given this diagnosis but because he has worked so hard just to be here, with me, ever since he was conceived. He is so strong and so loving and so full of Light and I REFUSE to allow anything on this physical plane, in this physical world, to ever dim that. I will give Nolan everything possible to support his growth and development, the top of that list is my unconditional love and every ounce of fight I have to clear the way. I am continuing his NAET treatments along with starting Reiki treatments in the next month or two. I don't assume to know how this will go, especially after the past couple of years, but I do know that this beautiful star child of mine will always know that that he is loved and that he can do and be so much more than any diagnosis that might ever be used to define him. He is the light of God, as we all are, and I will work to make sure that he carries that as a knowing that goes far deeper than any human experience he may have. 

My sweet baby boy who draws people to him so that they stop and smile. I have even had some adults who stop the stroller by getting in front of it to smile and try to make eye contact with Nolan. I have seen how some people even seem to be surprised that they are engaging him. There is a joy in this child that is so complete; I will nurture that with all the love I have in my being. I am the Indigo Child who came in to this world clear the way for and to support the Prism Children coming in now. I just didn't know that one of them would be my own son.

So my celebration in this last day of 2012 is that Nolan is my son and I am his mother. Thank you to everyone who came on this month long journey with me.


Christmas Day 2012




New Year's Eve 2012





Sunday, December 30, 2012

A Month of Small Celebrations - December 30


Small Celebrations

Here is to a wonderful movie with my mom on a rainy Sunday afternoon.
Les Miserables. 
I saw it on the stage in Washington DC over 20 years ago. A good friend of mine got tickets for us while I was visiting. Amazing seats!  I remembered nothing from it other than I was really moved. So when I saw it was coming out in the movies I knew I wanted to see it and talked my mom into joining me today. 
Once again I was moved to tears.
Fight. Dream. Hope. Love.


This is a picture is my favorite subplot.

Saturday, December 29, 2012

A Month of Small Celebrations - December 29


Small Celebration

Split pea soup. Homemade from left over Christmas ham. 
Sooo, good!
I love soup. I really do. One of the some reasons I have a tough time with AZ summers is because it is too hot to have soup.  :)

And I love sleeping all night long. Thank you Nolan.

Friday, December 28, 2012

A Month of Small Celebrations - December 28


Small Celebrations

New friends and Old friends

This morning as I left to go to work Nolan's speech therapist, Tara, came in for his one hour in home therapy session. He saw her and smiled and waved his hands in excitement. Nolan is a very warm and loving little boy.  It can take a little time for him to get to know you but once he does he is your friend. My little boy loves his therapists, Tara and Andrea. He flashes his wonderful smile and lets out a giggle or two when they come to visit. He will sit in their laps and play with them. It always warms my heart to see how these women won his trust and that he truly enjoys his time with them every week.

This evening I had a wonderful dinner with a dear friend, Elizabeth, from grade school. I met her when my family moved to Wahoo, NE during 5th grade and then we moved away at the end of my sophomore year. To this day that is the longest I have ever lived anywhere.  She still lives in the midwest but her family decided to spend some time in Phoenix over the holidays so we made plans to get together for dinner tonight. As soon as I saw Elizabeth I knew it was her by her smile. She and her parents were a huge part of those years of my life. I have many memories with her and spending time at her parents house. I really feel as though I reconnected with a good friend  tonight even though we hadn't seen each other in almost 20 years. 

Here is a picture is of two silly young teen girls in the midwest in the early 80's.



Blessed.

Thursday, December 27, 2012

A Month of Small Celebrations - December 27


Small Celebration

I see trees of green, 
red roses too. 
I see them bloom, 
for me and you. 
And I think to myself,
what a wonderful world. 

I see skies of blue, 
And clouds of white. 
The bright blessed day, 
The dark sacred night. 
And I think to myself, 
What a wonderful world. 

The colors of the rainbow, 
So pretty in the sky. 
Are also on the faces, 
Of people going by, 
I see friends shaking hands. 
Saying, "How do you do?" 
They're really saying, 
"I love you". 

I hear babies cry, 
I watch them grow, 
They'll learn much more, 
Than I'll ever know. 
And I think to myself, 
What a wonderful world. 

Yes, I think to myself, 
What a wonderful world. 

Oh yeah.



This song just makes me smile.


Wednesday, December 26, 2012

A Month of Small Celebrations - December 26


Small Celebration

I officially re -enrolled in college! 
I signed up for four classes today. I decided to work on finishing my bachelors and I even changed my field of study. I have about 1/2 the credits needed. I was focusing on psychology, a natural for me, but it never completely resonated for me. I never wanted to be a therapist. Life coach, hypnotherapist? Yes. Therapist? No. So, after the many changes and challenges I have experienced over the past couple of years I have realized that what I truly, truly wish to do is use my voice, my words and share my passion for communication. :) 

I learned so much about communication in my years as an airline employee. I watched how people talk to each other when they are stressed, fearful, in pain and in joy. In all my years with the airlines it is very possible I have watched over a million people be and act. I learned how to talk to people who were crying, sick, drunk, screaming in anger. And on a couple of really bad days I learned how to manage a riot. I learned how to be confident even when I was shaking in my shoes, because the group needed someone to be a confident leader. I learned how to keep 137 people interested in a safety demo on the plane. The key was being interested in what I was saying. If I was interested they were more likely to listen to me. So I made it a game, made it fun. I learned how to calm the energy of an entire aircraft of people with what I said and how I said it. I announced to the passengers on my plane getting ready to depart San Diego on September 11, 2001 what had happened in New York and DC, and what was going to happen next with their flight. The Captain and the First Officer refused to make an announcement to the passengers on board so as the first flight attendant, I did.

Then I started classes at Southwest Institute of Healing Arts and I learned about "holding space", being neutral and grounded. Being centered and coming from an open heart space, listening in love and acceptance. I learned that sometimes when I speak it comes from a deeper more powerful place than my own simple human wisdom. I learned how to honor the place someone was in and not judge. I started to see how these simple acts of communication changed the entire experience of a conversation. It is amazing what can and will occur when the person(s) you are speaking with  knows that they are safe, truly safe, with you. There is healing in that space. I learned it and then I started teaching it.

And most recently, my sons have helped me to learn how to have deeply intimate conversations and remain detached from the outcome. I learned that sometimes the best and most loving act of communication I can do is to listen quietly and offer love. I learned that we are actually empowered when we can speak of our own fears, pain and weaknessness. 

And now recently I have been feeling limited in the work I have been doing and what I wish to do because I do not have a degree. It is time to change that. I have much to learn. I have much to teach. I have much to create and I understand that now is the time for the next step. And so, a bachelors in communication here I come!

I am grateful to the million + people who have taught me these things. Whether they were in my life for a decades or for a moment. And I am grateful for the millions more I have to learn from. I am celebrating.



Tuesday, December 25, 2012

A Month of Small Celebrations - December 25


Small Celebration

Santa came last night.



Christmas Day - I went to sleep last night asking Eli to give me a sign on Christmas Day, just to say hi and Merry Christmas.  I woke up and took a quick look at Facebook. Someone posted this video, just because. I had this song played at Eli's service.


It was like Eli wished me "Merry Christmas mama, from Somewhere Over the Rainbow."



I didn't get to see all of my family
But
I had a wonderful Christmas with Nolan, my mom, Lucas, Whittney and Aden.
I learned that Nolan isn't that interested in opening presents. Actually didn't really care about it at all except for the golden gift from grandma - an "Alpha Pig" action figure. One of the characters from Nolan's favorite PBS cartoon, Super Why. He was soooo excited he just didn't know what to do with himself. He was clapping and laughing, almost over stimulated.

This is him studying Alpha Pig with he was still in his packaging.



Monday, December 24, 2012

A Month of Small Celebrations - December 24


Small Celebration

Christmas Eve traditions 
- Cuties Clementines
- Miracle on 34th Street, It's a Wonderful Life
- Walking around looking at Christmas lights (next year it's Zoo Lights!)
- Wrapping Christmas Presents
- Going outside, look up at the stars and wishing my Eli a Merry Christmas
- Make sure Nolan goes to bed early enough to not have a meltdown
- Remember that Love really is the most important thing
- Teach that to Nolan





Sunday, December 23, 2012

A Month of Small Celebrations - December 23


Small Celebration

The Mormon Tabernacle Choir 

My absolute FAVORITE song of the season is Carol of the Bells. I really like the Trans Siberian Orchestra version but I have to admit that my personal favorite, the one that brings tears to my eyes when I hear it is the  version by the Mormon Tabernacle Choir. The version my mom used to have on vinyl. The one I would put on the turn table and turn it up over and over and over again until I felt delirious joy at the sound of their voices. Yup, that one.

So, in honor of the season I shared my favorite song with Nolan tonight. He listened intently to almost all of it. :)

I am including both versions in this blog. Please listen to both if you haven't before and let me know your personal favorite.

Trans Siberian Orchestra


Or

Mormon Tabernacle Choir
(not exactly the same as my mom's album but close)


And the lyrics

Hark! how the bells
Sweet silver bells
All seem to say,
"Throw cares away."
Christmas is here
Bringing good cheer
To young and old
Meek and the bold

Ding, dong, ding, dong
That is their song
With joyful ring
All caroling
One seems to hear
Words of good cheer
From ev'rywhere
Filling the air

Oh how they pound,
Raising the sound,
O'er hill and dale,
Telling their tale,
Gaily they ring
While people sing
Songs of good cheer
Christmas is here
Merry, merry, merry, merry Christmas
Merry, merry, merry, merry Christmas

On, on they send
On without end
Their joyful tone
To ev'ry home

[Repeat from the beginning]

Ding, dong, ding, dong

Saturday, December 22, 2012

A Month of Small Celebrations - December 22


Small Celebration

Finally finishing putting the ornaments on the Christmas tree.  We used our small artificial tree this year. It stands about 4 ft tall. It has been up for almost 2 weeks but I just could not get motivated to decorate it. My heart wasn't in it. So today, I decided to do it anyway and I am glad I did. So pretty. 


And this is a wonderful ornament I got from my SIL this year. My little snowman family. Me in red and my boys in green. One on the earth with me and one with the stars.


Friday, December 21, 2012

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!

Thursday, December 20, 2012

A Month of Small Miracles - December 20


Small Celebrations

I talked on the phone with one of my brothers today. He has gone through a lot of difficult changes the past couple of years and is looking at some more coming up. He is busy working crazy hours and I am busy being me so we don't talk as much as we would like. J has a great sense of humor and we always laugh when we chat. 
It was good to laugh with him today.

This picture was taken during our "hat" Christmas a couple of years ago. Everyone got a hat for Christmas. J decided to wear his in a slightly different way. :)


Wednesday, December 19, 2012

A Month of Small Celebrations - December 19th


Small Celebration

Today's celebration is simple. Because some days the mountains in our path seem so much bigger than what we can do in the moment. 
So 

I am celebrating that I can go to sleep tonight and after a good nights sleep it will be tomorrow
And tomorrow is another day to change the world.


Tuesday, December 18, 2012

A Month of Small Celebrations - December 18


Small Celebration

Celebrating traffic delays and highway closures on a Monday morning.  I had a 9am job interview this Monday. It was only about 13 miles away but in trying to be the organized planner I left my house around 8am so that I could make sure to give myself the time I might need to find a building that, according to the person I was meeting with, was hard to find. So I leave my house and get on the freeway. As I am waiting for the on ramp light to turn green for me I notice that traffic is starting to slow down on the freeway in front of me. By the time I actually get on the freeway it is almost at a dead stop. Nothing I can do now but sit there and try to get off at the next exit. That next exit is two miles down the road. That two miles ends up taking me an hour to get to. At 8:30am I called the person I was meeting with to let her know I would be late and why. Her next appointment is 10am. She gave me the choice of rescheduling or getting there as soon as I could. I went with getting there as soon as I could. I finally get off of the freeway at 9am and within 30 minutes I am walking through the door. During my drive I kept hoping that I would be shown why this delay had to happen today and that it wouldn't negatively effect my chances for the job. When I got to the office I was only able to meet with the person who was to interview me for about 15 minutes.

But

After that I was able to step into another office and have a 45 minute conversation with the owner of the business. We clicked  and connected. And I am happy to say that I was offered the job this afternoon. I really, truly, completely believe that my opportunity to talk with the owner of the business like that is what got me the job. Had I left my house 5 minutes earlier I would have been past the accident that caused the freeway closing or a possibly even a part of it. Had I left 5 minutes later I would have seen the freeway was closed and would not have gotten on it and probably would have gotten to the interview on time and not had the one on one time with the owner.  Interesting....  :)

So, I have been hired as a Program Coordinator at "Mad Science". They create after school programs and day camps for kids that focus on science projects and experiments. The schedule has flexibility with the perfect hours to fit in with my life. My first day of work is Thursday. Another opportunity in the educational field!  I am ready!




A Month of Small Celebrations - December 17


Small Celebration

I am late on this one. I'm sorry.
I got a phone call from a friend last night. Her husband was in the ICU from a gunshot wound.
I left my house at about 7p and stayed with her until some family were able to make it in from out of town.
I am celebrating the bullet only hitting his lungs and not his heart. I am celebrating the quick response from the medical staff to save his life. I am celebrating that his light is still shining on this earth. 
I got home at 3a this morning. Soon I am hoping to celebrate my son taking a a nap today so that I can take one too.



Love to all of you.

Sunday, December 16, 2012

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.

Saturday, December 15, 2012

A Month of Small Celebrations - December 15


Small Celebration

Nolan is learning how to mind his P's and Q's.
Part of his sensory processing disorder is the need to chew. So, I ordered him something he could chew on. A "P" and "Q".
These items were created to help children like him manage his need to chew and give him something that is safe for him to chew on.
We got them in the mail today. He seems interested in them. Let's see if they work.





Friday, December 14, 2012

A Month of Small Celebrations - December 14


Small Celebration

It was a difficult day today. I was on the verge of tears much of the day. I felt and thought about the trauma the survivors will have to heal, the pain of those who had a love one die and especially those parents who are facing their first night of not tucking in their child in to bed.

Then, in this sadness, I remember

I believe in the power of Love. 
I know that the power of Love is real and can, has and will change the world. 
I also believe that Love is a verb, an action or string of actions. 
Love is the choices we make in every day life. 
Today I have seen many posts about prayer for all involved in the events of Newtown, CT this morning, including my own, and I think of an old African proverb

"When you pray, move your feet."

So as we pray may we move our feet so that we can be that Love in action and change the world.



Thursday, December 13, 2012

A Month of Small Celebrations - December 13


Small Celebration

The rain and cool air and clouds
And cool air
And rain.

It's BEAUTIFUL in Arizona right now.


Wednesday, December 12, 2012

A Month of Small Celebrations - December 12


Small Celebration

Another Nolan celebration. This one always makes me laugh. And I needed that today. 
When Nolan and I play - "I'm going to get you"... He runs to the same spot behind a book self in the living room. He laughs hysterically as he "hides" from me. Then he gets so excited with the anticipation of me finding him that he can't handle it and will jump out and run right into my arms laughing and screaming with a big smile on his face. No matter how long or difficult the day may have been for me, I can't help but to laugh as loud as Nolan when we play this game.

Additional celebration - going to bed  before midnight. Heck! Going to be before 11p!

Nolan -the blur- as we play.

Tuesday, December 11, 2012

A Month of Small Celebrations - December 11


Small Celebration

Nolan has been talking up a storm. Of course he is using his own language and I don't have a Rosetta stone for it but we have been making it through okay.
And then today he said "mom". That is a daily occurrence now. Yay!  But it gets even better than that.
After saying mom he said something that sounded just like "I love you." 
Is that what he really said? I have no clue but I know that in my world, in my mind, in my heart that is exactly what my little boy said to me today.


Monday, December 10, 2012

A Month of Small Celebrations - December 10

Small Celebrations

This is an easy one.
Melatonin!
I have been on a number of sensory processing disorder support pages in which parents have shared how their sensory child had problems sleeping at night, whether is was falling asleep or staying asleep. Boy, did that resonate with Nolan's experiences recently. The lack of sleep we had both been facing was leading to more difficult days for Nolan with unexpected melt downs. And mornings for me where my body hurt, I was so tired. So I was ready to try something fairly natural that would help Nolan, and then me by default, to sleep at night. Last night was the first time and I must say it worked!!!
Nolan slept all night. :)
And I decided to try the 3mg of melatonin too, just because, and I slept too! A wonderful sleep. I woke up refreshed, relaxed and even energized! I literally felt like a NEW person!
So tonight is another melatonin night in hopes that Nolan and I can continue this pattern of good, healing sleep. 

Yay for sleep!



Sunday, December 9, 2012

A Month of Small Celebrations - December 9


Small Celebration

Today was the first day in months that I have had an afternoon to myself. No classes to teach or grade. No sick child to take care of. Not sick myself. I was not needing to catch up on sleep due to Nolan not sleeping. I did not need to try to nap because I was sick. 
So, you may be asking yourself, what did I do?
I watched one of my all time favorite movies - Love Actually - with my mom. A wonderful movie with a number of stories about love interwoven together. It is real and sad and romantic with the British humor that makes me laugh until I cry. It helped me to remember that I am a romantic sometimes too. It was good to be reminded of that. In small celebration, I thought I would include a link to THE BEST minute of the movie. 
The Pointer Sisters sing "Jump" and Hugh begins to shake his hips.  
Just try to watch it and not giggle.


Saturday, December 8, 2012

A Month of Small Celebrations - December 8


Small Celebration

This year's Christmas cards where delivered today. Since my boys were born I have been doing a photo card. This year I found a card that I loved. It was the first one I saw when I went on the Vista Print web site.
Peace, Love and Joy
Peace is my Eli. I know that peace is in his soul. I feel that peace radiate from him when his presence fills my space, my mind.
Love is me. I remember when I understood that to Love was the reason for my life. My boys have taught me more about love than I could have ever imagined. I know they were meant to be my sons. And I was meant to be their mother.
Joy is my Nolan. His existence in my life brings me unmitigated joy. It thrills me when he expresses his absolute joy. Just chasing around the house saying "mommy's gonna get you!" brings out his joy. The smile on his face could light up Phoenix for a month.
And finally, I decided on the first Christmas of my family that every Christmas card would have a star on it, somewhere. It would be my way of knowing that even though Eli may not be in the picture or sign his name on the card, he would be there. My son who plays amongst the stars. 

I love my Christmas cards this year.



Friday, December 7, 2012

A Month of Small Celebrations - December 7


Small Celebrations

Finding my passion again. 
Feeling inspired again. 
Being able to make decisions to move Nolan and I to the life I wish to create.
All of these things occurred today.
I have gone through a number of changes: financial, career and life focus. In this past month I felt like I lost sight of the direction of my life. I could blame it on an extended lack of sleep, stress and being sick, but more than that I think I went through an energy shift and change of perception. One that has helped me to clarify my intentions.
I am so very thankful for the clarity that is showing itself in my life now.
I am celebrating!



Thursday, December 6, 2012

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.

Wednesday, December 5, 2012

A Month of Small Celebrations - December 5


Small Celebration

Today was a difficult day for a couple of reasons Woke up with a migraine. Having a heck of a time getting anyone to look at my resume and say "Hey! I need to hire this amazing, talented, wonderful woman!" Sometimes Nolan's upcoming evaluation with the developmental pediatrician weighs on me. I had a sometimes time with that today.
But
Today I also had a follow up appointment with my endocrinologist. I had my thyroid removed in 2011 due to a cancer diagnosis. Then in my year follow up ultra sound they found a small mass in the supposedly empty area where my thyroid used to be. Alarms went off, they talked about full body scans, a dose of radioactive iodine.. Instead we went with wait and see. I had another full blood panel done and went in today to get the results. My blood was tested for thyroglobulin - the classic marker for problems after a thyroid has been removed. Because I have no thyroid my body should not be making any thyroglobulin, So if the number is even measurable it can indicate a problem. The results of the test today? My thyroglobulin levels are so low they cannot even be measured!!!  Wonderful news. Basically a negative for my one year follow up for cancer. They want to do another ultra sound to see if there is anything to see but right now there is celebration going on.  :)
And
Today I got a wonderful Christmas gift in the mail! I joined in a Christmas ornament gift exchange in one of the grief groups I am in. I did this last year and my person never sent me a gift. This year I took part again and the person sending me the gift sent it early! It is two beautiful personalized ornaments. One with both of my sons and one in remembrance of my Eli. I am grateful to my friend Shaina for taking the time and energy to have these wonderful gifts created for me and my sons. 


Tuesday, December 4, 2012

A Month of Small Celebrations - December 4

Small Celebration

Today I celebrate my clients. I have made a number of changes in where and when I see my clients since I opened up shop in 2009. There were many that I lost with all the time I had to take off due to the pregnancy, my boys and my health challenges. And some others left when I decided to work only via the phone or skype. But the clients who have made these changes with me I am so thrilled to have. I had a powerful client session today and it let me experience again the joy I feel when I am able to support someone in their personal growth, awareness and transformation. It helps to remind me that I am good at that. And I feel as though I am fulfilling a deeper purpose in my life while I assist someone in fulfilling theirs. There is no more beautiful feeling in my professional life than when I know I have done this. 

This is one of my work spaces. 
:)


Monday, December 3, 2012

A Month of Small Celebrations - December 3

Small Celebration

Nolan has a difficult time getting to sleep sometimes. I think it might be related to his sensory issues but I don't know for sure. It is something to talk to the developmental pediatrician about when Nolan has his appointment in a couple of weeks. So today at nap time he was yawning, rubbing his eyes and rolling around on the floor crying so I took him up to bed. He laid down immediately, curled up and closed his eyes. And then for some unknown reason 25 minutes later he was up. I have learned that when this happens I often need to go in to "remind" him that he was going to sleep. So I get him out of the crib and sit down in the rocking chair in his room.  I love these times together. It's just he and I. During the day Nolan is so busy that his hugs last about 2-3 seconds until he is off to do something else, but during these nap times he is happy to sit quietly in my lap. We giggle, sing, play hand/finger games. He likes to take off my glasses and play with my eyelashes. He thinks it's hilarious. That quiet, cuddly time is precious to me and it seems to be to him too because he calmed down and when I laid him back down he was quiet and asleep 10 minutes later. Maybe he just needed some alone time with mommy. Or maybe he knew I needed some alone time with Nolan.


This was taken a couple of months ago but here is a picture of my little boy in his crib "reading" his book. With his sweet little "I just woke up" face.




Sunday, December 2, 2012

A Month of Small Celebrations - December 2

Small Celebration

My mom and I finally had and took the time to get the garage re-organized!  We had someone working on the dry wall in the garage and when he was finished he was going to move all of the boxes back to where they were. Well he never finished the job and just disappeared so we needed to clean up. Then the nasty cold, flu and various infections hit the house making us all sick for over 3 weeks. I had neither the energy nor the interest. So we squeezed our cars into the garage. It was kind of comical as we would inch our cars in and out. Claustrophobic! Finally today, while Nolan was visiting his other grandparents, mom and I got out there moved everything around and even swept the floor. Ahh, it is so organized and clean. It feels like a breath of fresh air when I walk in there. It seriously makes me happy. I am definitely a person who becomes disorganized in a messy place. And now it is no longer dangerous to park in our garage!
It's is amazing how things left undone can weigh on us.
 Even the little things.  :) 






Saturday, December 1, 2012

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.



Tuesday, October 23, 2012

Speak strongly, boldly or don't bother.

When I started this blog it was to share my journey through the grief of my pregnancy and the loss of one of my sons. I plan on continuing to do this.
And
Now that I am two years out from the pregnancy and Eli's death life has happened, as it always does, I have faced some other things, thyroid cancer, car accident, having an ovary removed
And
Now I am working to understand the challenges of raising a beautiful and amazing son who has some special needs that may or may not be life long.

This is where my recent writing struggles have come in. I can share, intensely and honestly, my personal experiences, my pain, my challenges, my life and in many cases have done so fearlessly. Now with the events of the past couple of months a fear has set in. For me to write about what has been taking my time, energy and love requires that I start to speak of Nolan's challenges. It is no longer about my pain. It becomes about Nolan's life. If I write honestly about what is going on in our life I could possibly open him up to judgements, bullying, cruelty, misperceptions due to his current challenges. Nothing posted on the internet ever completely disappears. With so many situations of children being cruelly treated by others, children and adults, I have become scared for what I might share and how it will effect Nolan in the future. It is no longer my life I am writing about. It is Nolan's.

EVERY SINGLE TIME I post I struggle with these thoughts. To think I might ever write something that could come back to harm my son haunts me
And
I know, for myself, I need to speak/write honestly and nakedly or it is a waste of my time. Speak strongly, boldly or don't bother. So, as I see it right now, I can choose to trust in the beauty of humanity and the Divine and know that the journey with my son is guided and protected and designed to share and empower others.
Or
I can live in the fear of possible judgments of unknown people that may never occur.

I know myself. I cannot make a choice in fear. That goes against everything I believe and everything I wish to teach my son about living in this human world.

So, I believe you will be seeing more about my and Nolan's experiences with his therapies and possible future diagnoses.
At least that is what I believe right now.



Thursday, October 18, 2012

October - Another Awareness Month Close to My Heart


Yes, another awareness month. :)

October is Sensory Processing Disorders (SPD) Awareness month. While there is no official diagnosis in the DSM (Diagnostic and Statistical Manual of Mental Disorders) those who live with it and live with/love those who do face it know it is a real experience that needs special attention and care.

This is Sensory Processing Disorders as I understand them - 

SPD cause the children facing them to respond inappropriately to various stimuli due to the inability to correctly define the information going into the brain. This can cause children to experience pain and fear in response to the most basic of stimuli or not be aware of pain and discomfort and act out wildly to try to get information to their brain and "feel something".

The common course of support is occupational therapy. The therapist works with the child to understand their needs and works with the parent to create a "sensory diet" for the child to help keep them balanced, evenly stimulated and feeling safe.

SPD can sometimes be misdiagnosed as Autism, ADD, ADHD. From what I have read, children with those diagnoses can often have SPD and SPD can be a stand alone experience. Medication does not help SPD, only care, attention and hard work on the part of the therapist, the parents and the child.

I am learning about SPD because my amazing son, Nolan, has been getting therapy for it for the past 3 months.

For more information on Sensory Processing Disorders please visit.

http://www.spdfoundation.net/about-sensory-processing-disorder.html




Sunday, October 14, 2012

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.

Thursday, September 27, 2012

Sensory Disorders, Autism Evaluation and "I am right. You are wrong."


Yesterday was an interesting day. I want to talk about it but before I do, here is some back story. For those of you who have been following my blog you noticed that I only posted once in July and then not at all in August. There were some things going on with Nolan that I needed to get a grasp on before I would talk about it.

In June I took Nolan to his pediatrician to talk about the fact that he was not talking, at all, not even mama or no! At this point he was almost 21 months, 18 adjusted (due to his premature birth). By all standards he was behind in speech. At that point I had also noticed that sitting still and reading a book was almost impossible and he had started to spin when he would get stressed out. He did not always respond to his name and would not look at people he did not know in the eyes. The doctor referred us to Early Intervention and after SIX different evaluations by eight different people I was advised that he was significantly delayed in speech with moderate cognitive delays. Now I know that many of the people evaluating him did not see the him the way I see him because he was stressed out with them in his home, but to say that I was heart broken would be an understatement. I know his intelligence. I see it daily.

Fast forward a couple of months and Nolan is now getting weekly therapy appointments with a speech and occupational therapist and it has been discussed that he has some sensory processing disorders, mixed to be exact. He seeks visual and tactile sensory input AND he can get overwhelmed and over sensitized by the input he seeks.  So it is a constant balancing act to keep him stimulated and protect him from getting over stimulated. That is what the occupational therapist helps me to understand. She helps me to find him appropriate and satisfying sensory play. Here is the web site on it if you would like more info on sensory processing disorders http://www.sinetwork.org/index.html. The speech therapist helps him create/build his communication skills. I also started with the alternative therapy NAET, which I will talk more about later but here is the website if you want more info http://naet.com/Patients/patientshome.aspx.

And finally Nolan is scheduled next Friday with his first appointment with a developmental pediatrician for Autism evaluation. Which I will talk more about, again, at another time.

So I was cruising the internet at 2am yesterday morning because I could not sleep. Nolan was awake and I had a bitch of a migraine. I was looking up info on Autism and twins, ID or fraternal.  I thought I found a study that said identical twins are diagnosed with Autism more often then fraternal twins or singletons. And I asked if anyone else on one of the TTTS facebook pages I am on had ever heard of this. It started a long discussion about Autism, which happens almost anytime it is mentioned since there are many different people who believe there are many different causes, including that it is not a real diagnosis. Anyway, I got into a disagreement with another TTTS mom and in the end I could not find the link of the study I thought I had seen. I got snappy with her and ended up feeling let down with myself. She expressed that she needed to believe that Autism was genetic because that made it less scary to other TTTS parents. I learned that I needed to believe that Autism was due, at least partially, to environmental causes because then I felt like I had some control over it. I well know that it is our attachment to being right, or thinking we have control can lead us to great pain in our lives. And I know that I am very attached to this, right now at least.

What hit me after much of the discussion had ended was that I was feeling out of control. That there was one more thing to deal with that I did not choose to happen, especially not to one of my sons. I was fighting to believe that there was something I could do to change or alter the possibility of an Autism diagnosis for my beautiful Super Hero Nolan and that caused me to fight with someone else over something as silly as what causes Autism. Don't get me wrong, the effects and challenges of the symptoms of Autism are not silly but to fight with someone about why it occurs or even what it is, THAT is silly. But we were both attached to what we needed to believe to keep us feeling safe and empowered. I got sucked into the game.

Just when I think I have healed from many of the recent things in my life, something else happens and it takes me back to the beginning of my pregnancy. There has been little breathing room, little pause, little quiet and very little adjustment time between. And then when I get attached to an outcome, when I need to be right, like with the Autism discussion, I get angry, frustrated, scared, unhappy and rude. I am continually being given the opportunity to detach in the most intimate and important parts of my life, my and my son's health and well being. I am working on it Universe. I am working on it. I understand that am being pushed to remember that my power DOES NOT come from fighting with someone about their beliefs or perceptions but it comes from my willingness to take what I am given and create something new. That is my true spiritual strength. And - dear Universe, if you would be willing to give me some moments of calm in between, it would be beautiful.


I will end this post with a moment of calm I found between Tobey, the family cat, and Nolan.
I feel very lucky to have caught this image.

PS - This is a rewrite of the "Random Events Overload" post. I deleted that post after realizing that it wasn't really saying what I really wanted to say. :)