Where is Nora?

So Nora is in heaven or firmament or life everlasting or pearly gates or nirvana or Zion or eternal home. You get the picture, it can be sort of confusing and overwhelming.
Some people believe in science and say our bodies cease to exist. I have several compelling arguments against that idea including Newton's first law. A body in motion stays in motion. Our bodies have energy. We are not able to define or speak clearly about this energy because many people don't clearly understand it. But if you think about conversations you have you will realize you talk about it a lot. So when you say "You are making me mad." The negative energy from the person you are dealing with is rubbing off on you. When you say "I got tingles when you said that." Even the words we say have energy and can have a powerful affect on those around us. Words have enormous power that most of us don't realize. So these energies that may be understood on one basic undefinable level are real and acting forces in the world. According to Newton's law, energies don't cease to exist. Nora's energy was undeniable. Her ferocious pursuit of life was tangible. Her energy never ceased to exist even though her broken body did, as all of ours will. Her energy lives in a realm that many have tried to define.
The realm of heaven has long been misunderstood and abused. Do this or you will go to hell. Do that and you will go to heaven. What a system of control. What about Love God and do what you will. Now that is freedom. It is the freedom Christ brought in the new testament. What does it mean though? Love God, not material possessions. Love God, not this earth. Love God, not yourself. Why? So that at point of death, your energy won't get stuck here. If your energy, your soul, your essence loves how wise your self is and you see nothing beyond yourself, your view and ability to move on is limited. If you love money, food, people, projects, nostalgia, or just stuff of the world, you will be limited. Your soul will seek to stay here with that stuff. BUT if by chance your heart's desire is raised up into things greater than yourself and your life and your stuff, your soul will be free. Detachment from worldly possessions is crucial. Not holding onto our plans, our ideas, our wealth, our success. Instead letting it all go. Continue to be smart and productive and thoughtful and caring but don't hold onto the results like they are your own or they belong to you. They don't. Let go. So where is Nora now? Her soul her energy continues to exist. There was a little boy who's heart stopped suddenly on Halloween. He was rushed to Children's. I barely know his mother but she knew of Nora and said she felt Nora's presence with them the whole time. I did not feel Nora's presence once that whole time. Where was she? At Children's helping Gabriel live. He is now a well boy back at home and school functioning as a well boy. The doctors call him a miracle and they don't use that word unless it is. Kids whose hearts stop often have mental delays if they are able to brought back (only 3% are brought back) and he has no mental change at all. Amazing. Nora lives on everywhere. I can't wait to see her again and I know I will someday when it is my time. Meanwhile I am working on letting go so I too can be free.

Child Development

I go back and forth with my thoughts a lot. Sometimes, especially after having Nora, I think children will be fine. As long as they have a lot of love from the same caring nurturing people, they will turn out fine. Then the other times I think children need proper stimulation and a lot of attention and care to turn out well. So this translates into organic food fads and occasional enrollment in fun extra curricular activities for Evie.

When I feel good, motivated and have some time on my hands we eat all home cooked, mostly vegetarian organic food. Like for example tonight I made low sugar banana muffins. I know exactly what non toxic ingredients when into them. I know the benefits of the cinnamon and the banana and I feel good. One month ago I was giving her a totally processed chicken tamale that I microwaved ... it recommended microwaving it in plastic, at least I took that off and wrapped it in a damp cloth right!?! Even then I still feel pretty good though. I think part of my great self-esteem is my ability to forgive myself. I just do the best I can with the time and resources and don't sweat the rest. I know it is important to eat right but I also know eating right isn't going to prevent the heartache of losing a child to a congenital heart defect. So now I have perspective.

My other wavering thoughts are on extra curricular activities. I never did what a lot of kids these days do, the obsessive running around to get to all their sports, music, and other lessons, and I turned out okay. I actually think family time together is what is missing and it is lost to all these extra curricular runnings around. Then I read "Tiger Mom." Now I have a different view, for the time being. :) I have always wanted Evie to dance. She always been super sensory and it fits her well. She loves it. So now I find myself calling all the dance schools in the area and being frustrated with the lack of classic ballet offerings as well as the total lack of Irish dancing. Will she be fine with some fun mediocre dance company, probably. As a mama though, I want the best, whatever that is.

It seems like a forever struggle for me. Acceptance versus striving for greatness in all things.  I think greatness is good and important but so is moderation. So I plan to continue my back and forth until I find some other way to be.

40 days

Being pregnant has made me think deeply and long and hard about Nora and everything she ever went through. I mean specifically the pain she endured.

The other night I was nauseous as I am most of the time these days but it was making me think about Nora. She threw up often and we never really knew why but we think she had nausea a lot. I felt awful for her and began to really wonder why she suffered. I felt awful that we put her through not just the nausea but the surgeries and everything else. We kept her alive artificially. Why? I know why. It was because she wanted the chance. She told me everyday she wanted to keep on fighting for a chance at this life. I knew while she was inutero that her death sentence of a diagnosis did not fit the baby's spirit. She was feisty and vivacious. She was not going down without a fight.

But still what she endured is so utterly heartbreaking. A lot of the pain she suffered was ironically exactly 40 days from the day she went for the second heart surgery until the day she died. The mistakes that were made caused her an inordinate amount of pain, the kind of pain that should be controllable, the kind that shouldn't be allowed, the kind of pain that you can't imagine. I can. I was there. It was terrible. So why Nora. Why pain? Why so much on someone so small and innocent?

The answer is elusive. I didn't quite get it until after she was gone. It is unexplainable really but I will try. Somehow in the depth of my soul I know that Nora's pain helped heal us and people that knew her and the world. I knew she accepted her pain with fortitude and courage and fearlessness. I saw the determination in her eyes when it came. I knew, you could feel it, that something great was going on. We couldn't see it but we could feel it. There was a peace at times of extreme pain that beyond explanation. Sometimes there was even a joy, a victory in her eyes while it was happening.
40 days of it. The irony is so uncanny. 40 days fasting in the desert. She did it for us.   

When the time came and the pain was too much. The suffering was too great, she let us know. We let her go. Life issues can get harried and complex. There is no room for judgement, only love. No one can say who should live and who should die. There is no right and wrong when it comes to these delicate situations. There is only what is. Nora always had the choice to live. It was always her decision. Good parents listen to their ill children and help them along as much as they can as long as the child says yes. Sometimes living does get too hard. Sometimes the pain is too great ... and I don't mean just physical pain. Sometimes there comes a point when we need to let go and say goodbye. These decisions are not easily made and this is not an area where there is much clarity. All I know is never judge another.

Nora and Baby Volker #3

I am pregnant due on Sep.29th. I like that it is the 29th. Nora was born and died on that date. Since we didn't try to get pregnant, we are still a bit confused as to how it all happened despite our knowledge of the birds and the bees, I do feel this is a bit of a serendipitous event. We feel grateful.

People ask me if I am scared or anxious. This baby does have an increased chance of having a congenital heart defect just because having any previous children with one increases your chance for future children having one. Essentially most women have a 1% chance of having a baby with a heart problem, I have a 10% chance. Then I think of Nora and the chances we would have had to have her with all her glory were minuscule ... like winning the lottery. It was like winning the lottery. She was the most amazing baby I have ever met. So am I worried? No. I am so excited. No matter what happens, we having a baby and that is just about the most precious thing that can happen to a person.

The only issue I deal with when I am pregnant is imaging my love for this child being as great as my love for my current children. When I was pregnant with Nora I questioned would there be room or enough love for another child. Hello. It only took like one second for that to go away ... from the second I first held her we were bonded mother and child for life in the most miraculous of ways. Instantaneous. So I know the same will happen with this little sprout. Instant love, what could be better?

Nora's been gone for more than six months. It is crazy how normal she still fits in with our life. Today we drove to Evie's dance and there was an eagle flying overhead. I asked Aaron to stop and he said don't worry it will come back. Sure enough, we drove to the other side of the river and there it was again, flying real low over our car. We all waved. Then I got to dance class and met a friend of a friend who I don't even know. She has a picture of Nora in her home that she sees everyday. She said it inspired her and she welled up with tears. My baby girl is blessing people I don't even know. Seriously how lucky can one mama get.