Saturday, February 26, 2011

Wandering and Muchness

I have found myself wandering around mentally and emotionally recently. Wandering itself is not a bad thing. When I do it with a sense of wonder, anticipation and excitement, I love it. I have been wandering around in the dark, per se. In connection to the sadness and grief I have been feeling. Then it feels like there is nothing right the world anymore and everything good is being snuffed out by thoughtlessness, thievery and carelessness. When I wander like this, I usually get into trouble, mental and emotional trouble this time. I found myself obsessing about the recent state of politics, all the people who are fighting for what they believe in and the politicians who seem to have lost their sense of decency, compassion and wisdom, if they ever had it. I was falling into a hole. Hand in hand with that was an inability to smile, focus, function, bounce back from basic daily setbacks. It was time to change my focus. Meditation was not working, working with my clients was not working, talking to friends was not working......

Then inspiration hit. I found a project. The project is based on the quote I posted as my facebook status a couple of days ago. "I used to be much muchier , I think I have lost my muchness." This quote came from my sister in law and niece. It is from Alice in Wonderland and it explains how I have been feeling lately. Since Eli's death I have felt like a shell of myself - a strange combination of intense sadness covered over with a bubble of emptiness and on top of that what seems to be my normal self. Sometimes the sadness breaks through, sometimes I am sure that I look empty, at least around the edges.... But now I have a project to focus on, something to help me to move through. It is still in the formation stages but I am hoping that it is something that other baby loss moms and dads can use to help heal the grief from the loss of their child and find their own muchness again.

More to come.

Tuesday, February 15, 2011

So Many Things

Wednesday after the surgery

Nolan is out of the hospital and doing amazing. He was kept an extra day just because of the problems caused by the double intubation and the trauma done to his trachea. They gave him a couple shots of steroids to help with the swelling. Those sent his blood pressure up so they stopped them and kept him another night for observation. We were released Saturday morning. What an amazing little boy. He is such a good healer. So now he is getting tylenol a couple of times a day, is a little fussy and sleeping a little more but is doing amazing for having surgery on his skull just a week ago! He gets measured for his helmet/band this Thursday and should be wearing it by next Thursday. It was a sleeping day today. He slept well this afternoon and mom got a great nap in too. Trying to catch up from 3 days of living and not sleeping in the hospital again. The stress is slowly fading now that I have Nolan at home and my arms again.

I have the ability to see colors around people. I don't physically see them with my eyes (that would be wonderful if I could!) more like a sense of it or maybe like how you would remember a color after seeing it. Anyway - I have been seeing Nolan in a circle of pink light for months, which always made me happy. Pink light meaning wrapped and held in love. On the morning of the surgery I noticed that the color around him changed to a beautiful, brilliant white. The white of Divine love and protection. It was a good thing to see. I know he was surrounded by his angels, my angels and our angel Eli.

Today is the five month anniversary of Eli's death. I slept with Eli's teddy bear last night. Every time I moved in my sleep I was very aware of where the little bear was so that I could continue to hold it tightly in my arms. Cried myself to sleep and a couple of times today. I heard something in the movie "Eat Pray Love" last night that made me think about my grief. They were talking about still loving and missing someone after a break up. The response was - "Every time you think of me, send me love and light and let it go." The sending of light and love is no problem, I was doing that with both of the boys before they were born. My challenge is to "let it go". I realized that my grief has to do with my unwillingness/inability to let it go. I want to hold Eli to my heart again, kiss his little nose that was exactly like Nolan's - not let him go. Of course I know that I will never hold him to my physical body again. It is impossible in this lifetime but at five months I am unwilling/unable to let go of the desire to do so. The space between what is true and what I desire is where my grief exists. My son Eli is no longer on this earth and no amount of anything will change this. I can fight what is true or accept it and let it go. - When I am ready - I am not quite ready yet. I can only do what I can do. Being compassionate and kind with myself is what I can do right now.

Finally, I am so grateful for all of the love and support sent to me and all the healing and love sent to Nolan while he was in the hospital. As a wise friend of mine pointed out to me. "Is it possible that all that you have received has brought about the miracle that his case was better than many and the surgery needed was less?" Why yes, yes it is possible.

Thursday, February 10, 2011

ICU Again

As I write this I am sitting on the sleeping sofa in Nolan's room in the PICU (Pediatric Intensive Care Unit). The tv is on HGTV, something mindless and gentle. The room is dim and quiet for right now. And it is just Nolan and I. His nurse has a watchful eye looking directly in the window to the room. She checks the computer monitor every so often to watch Nolan's stats. I haven't asked but I think that Nolan is the only patient under her care tonight because she is in the door within 2 seconds of one of his monitor's warning bells going off.

It's 2am and I should be sleeping, but I can't. Nolan is on a ventilator that breathes for him when he "forgets" to. One of the challenges he still has from his premature birth and his NICU days - When his body gets under great stress he forgets to breathe, apnea. Nolan had surgery today to correct a growth problem in his skull, sagittal synostosis. Basically, a small portion of his skull was unable to grow correctly to accommodate the growth of his brain and it had to be corrected. The surgery went well. He was in for just under 3 hours. The anesthesiologist had to heavily sedate him because he started coming to during the surgery. Because he was anemic Nolan also needed a small transfusion of blood to keep him stable.

And so we sit now. Nolan resting decently, sometimes. And I pray as I type this that he will remember to breathe consistently enough while sleeping so they can extubate him - remove his breathing tube. Because as it is now, when he becomes aware of the tube down his throat, he gags and bares down, trying to force it out. He cannot make a sound so he cries silently. His heart rate shoots up past 200 beats per minute, his blood pressure rises, he thrashes around in his crib, even though his arms are gently tied down so he does not harm his IV's - But worst of all - he opens his eyes and looks at me in terror. He does not understand what is happening. I barely understand..... I place my hands on him so he can feel me, call upon Eli and his angels, keep eye contact so he can focus on me and talk to him to calm him. He quiets within a few minutes - during those minutes I am in hell. Having one of my babies die is hell. Watching one of my babies go through hell is...... is..... somewhere no one ever wants to be.

I am disgustingly tired, emotions stretched tightly, in a normal world I would be hungry or be sleeping but the only thing I can focus on is willing Nolan to breathe on his own so we can take out his tube and I can hold him close to me.

Friday, February 4, 2011

Five Months Today

It was five months ago today that I gave birth to my two boys, the first time I saw them and the first time I touched them - all 2lbs 4oz each of them. Nolan is now around 15lbs!

We celebrated Nolan's 5 months by getting professional pictures taken. I took in his star blanket (I bought matching ones for Eli and Nolan) and Eli's teddy bear as props for his pictures. He did so well. We didn't get any smiles in his pictures, he was very serious and very sweet. I did not have the $160 to buy the smallest package but I did have $69 to buy 4 sheets of pictures. They will be ready to be picked up on February 17th. They are beautiful.

I turned on the flameless candles I bought for Eli. I have one above the fireplace next to his picture collage and one in my room in the glass cabinet where I have his mementos stored. I turn them on the 4th and turn them off on the 15th - Eli's life on this earth. Those 11 days were really rough last month. Sometimes it is so hard to focus or get anything done - grief hits me that way.

A friend of mine gave birth to her 4th baby yesterday. I am happy and excited for her. Her son is beautiful. When I saw that her baby was born, at home I think, I felt a wave of sadness - grief for my own pregnancy.... There was so much stress during my pregnancy because of the sadness of Owen's death, the stupid drama with the boys' father and then the TTTS diagnosis and all the medical and financial problems from that..... From July until their birth I was in constant fear that one or both of them would die at any time from TTTS. I did not have the joyful experience I always wanted - a time of celebration, shared love and positive expectations. In the scheme of things this grief is tiny compared to my grief for Eli and I would absolutely go through all of it again regardless - and yet I find myself sad at things that were not meant to be.

Nolan's surgery is next week, Wednesday the 9th. I had to make an appointment with Linda for a hypno session because I was losing my mind due to the fear. The terrible places I was going in my head were incapacitating to me making it almost impossible to function. After seeing her I got some breathing room. For Nolan and for myself, I cannot live my life in fear that something will happen to him, we both deserve more. Step by step, I continue to release that fear remembering to breathe.

Nolan's beautiful smile. :0)