It's 1am

It is exactly 1:06am and I am up and looking at pictures of identical twins. Why in the hell would she be doing that, you might be asking... I am not sure I know the answer. Because I miss my identical twin boys. They are not identical now. Why is that important? I don't know. Maybe it's not. Maybe it is just that one of my boys is here with me and one is not. And right now at 1:11am I am feeling it. Not crying though. I am feeling resignation and anger all at the same time. Resignation - it is what it is and there is nothing for me to do to change it. Anger - it is what it is and there is nothing for me to do to change it. One reason, two emotions.

This grief is not for the weak and you cannot know how I wish I could be done with it. I cannot count how many times I have heard "The grief does not end. It changes." and I know that my love for Eli will not end just be transformed, as it already has. Thing is, I am not really feeling all that transformed right now.

As another mother who also lost one of her twins to TTTS just said, "but I've had more good days than bad but there are still days I don't want to get out of bed.." I understand that sentiment. I have lived that sentiment. This process truly is a process that demands the choice to continue getting up and living every single day and sometimes, on bad days, every single hour.  It is a repeated choice. I am blessed to have this choice, and yet, I still wish, sometimes, to not get out of bed and to hide from my life, just for a little bit. Truth is though, that does not work either. It is actually easier to get up, get out, live, laugh and love, love and love some more. But sometimes I still wish.

I am having some of my TTTS friends going through VERY difficult times right now. One beautiful mama had to put herself into a mental health facility to try to support her grieving process. Because grief is ugly but grief that is stuck feels evil to the soul. Another beautiful mama just found out her 3 week old rainbow son has neuroblastoma. What do you say to a mother who lost both of her little girls to TTTS and when she goes on to have her rainbow baby she learns he has cancer? I don't know, so all I have is I love you and I support you in anyway I can.

I would humbly ask that you hold these mama's and their families in your prayers or in love and light or whatever it is that you do to keep hope and strength and courage and love flowing their way.

It is now 1:26a. I believe I am done looking at pictures of identical twins now. It is time for me to sleep. So I will end with the picture of my beautiful little boy. This is his thank you card to everyone who came to his and Eli's 2nd birthday party. It was a great turn out.  :)

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.

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.

Going Inside Myself

As I do when I am dealing with anything that brings tremendous fear, I have been going inside myself, hiding. The date for Nolan's surgery has been set for February 9th and I am scared.

The surgery is to correct a growth pattern in his skull, sagittal synostosis. The surgeon has done about 100 of these corrective surgeries. Nolan's surgery is actually going to be a modified version of the more extensive surgery most infants need. Recovery should be 1-3 days in the hospital and he will need to wear a helmet for 2-6 months to help reshape his skull. The reasonable, rational part of me is happy to know that his surgery is going to be so much less than originally thought
AND
knowing that it is coming up is bringing back the trauma of the medical ordeals of my pregnancy and Eli's death. Experiences I am still in the process of healing. My fear is so overwhelming right now that it is hard for me to breathe. It's like the elephant in the room of my life. I find it difficult to talk about. I don't know what to say and talking about it makes it way too real for me right now. It is impossible for me to hold Nolan and not cry. I go back and forth from wanting to curl up on the floor of my closet to wanting to spend EVERY SINGLE moment with Nolan. I do neither. I keep doing what I need to do to take of what needs to be taken care of and try to find my balance. Nolan deserves a mother who is strong and steady as he goes through this - so that is what I will be.

I am praying and meditating - moving myself out of fear and in to a place of love - Asking for and accepting thoughts and prayers of strength, healing, love and light for Nolan.

Tonight, I held Nolan and danced him to sleep, with his head and body resting on my chest. I am grateful and filled with love.