Weather, Mamas and Mother Nature

We had storms last night in St. Cloud and there were many thoughts and  feelings that these storms evoked from me.
First of all we ended up in the basement under the stairs as is our conservative approach to the sirens. This was no small task for this big mama especially since I spied a huge black spider as soon as we got in there. Then Aaron insisted on bring Nora's urn with us as well as his most treasured Nora artifacts which was totally sweet. It was also a reminder that the last time we were under those steps, she and her vent and sweet nurse Sara were there with us. Fitting the artifacts, urn and this big mama was not at all arduous compared to sweet Nora and all her equipment. She of course loved it because it was someplace new :) She made it fun. This time, not so fun. I was cramped and crabby. Evie kept trying to sit on poor daddy making him totally uncomfortable. Needless-to-say Nora made life more fun.
Then I became keenly aware of my motherly instincts. At first breeze I sent us all down there packing. We turned on the radio and it became apparent nothing was happening so we all came back upstairs. I kept looking outside and feeling fear which is something I rarely experience. After what's the worst that can happen ... been there done that. Somehow this baby inside of me changed some of that. I was practically sniffing out potential danger and responding with extreme caution. Then the sirens went off. Well then we all had to sit under the stairs with the door closed. Loony mama bear am I for sure!Mostly I kept thinking of what I have been saying all year, "Mother Nature is not too happy with us." Tsunamis, hurricanes, tornadoes o my. As a mother myself I understand what it means to love and to take care of my children but heaven forbid I hit a mood, I hope I am not the only one, and they misbehave and I explode a little. Now on a large scale poor Mother Earth. Imagine all she does for us. She goes totally unnoticed, gets chemicals dumped on her, trash poured on her, we litter her with filth all the time. There is little gratefulness and hardly an ounce of respect. Well I don't blame her for throwing a tantrum now and again. Is this foolish? Weather is weather, right? There appears to be no rhyme or reason. It appears to me however that many in St. Cloud last night were spared. There was potential catastrophe with every fallen tree. Yet most people were safe, no one died. Hopefully we all woke a little more grateful and hopefully we all will be a little nicer to our Mother.

Reflections on Judgement Day

Ok. I know I am a huge nerd, I just love conspiracy theory. I can't help it. When I heard about Judgement Day on May 21, I got a little excited. I love it when the crazies come out with something new. Sheer entertainment that feels a little real. Love that stuff.
So let's just imagine for one second that there is such a thing as the rapture and it will happen tomorrow. Then imagine what it would be like to be judged by God. That doesn't even sound right. Judged by God. I mean aren't we not supposed to judge each other and isn't God an all loving and forgiving God. I don't see God as a judge. So it all sounds wrong to me right from the beginning. I think if there were such a thing it might look a little more like a life review. God and I chilling with a bowl of popcorn checking out all the stuff that went on while I was here in creation. So like what I did that helped others and what I did that hurt others. What were the long range ramification of my actions.
I once read about a woman who had a near death experience and she saw all the consequences of her actions. So like she buys a shirt at the store ... Who made the shirt? What was there life like? Were they paid a fair wage? Did they have a family that was hurt by this person's shirt making job? What about all the plastic we use that will never decompose ever? What about buying food that was made with GMOs that hurt farmers and the soil? What about everything that we buy that is shipped or transported and causes carbon emissions that hurt our Mother? Maybe our famous and praised "buying power" will turn into a curse in the end... All the preachers that say if you are rich that is God blessing you. How did those people get rich? Were their workers paid a fair wage? Were they loving God's earth and creation by protecting our natural resources? Were they being responsible and honest with other people's money? This really made me think. What does it mean to be a loving human? Maybe a whole lot more than I originally thought. It may not be enough to just be nice to people. To love the earth and its inhabitants means so much more than many of us are ready for. No one is perfect, most certainly not me. But I do try so I hope that if there is a Judgement day some time I hope God sees that I tried.  

Nothing Compares to You

Interestingly enough Sinead O'Connor's song "Nothing Compares to You" has been going through my head nonstop since Nora died. I just found out today she wrote it after her son died. It fits with the feelings of a mother experiencing loss of that magnitude.
The reason I think of it often is because it is true. That amazing joy, the bright light, the exceptional spirit Nora brought is gone and there is nothing like it.
I wonder why it is that anytime I tell someone we are pregnant, like the doctor today, I quickly quip "But it wasn't planned. It was a huge surprise." I think maybe I want them to know I am not trying to replace Nora. I am almost embarrassed that we are having another baby. I don't know why. I feel like we are trying to replace her even though we didn't try. In the depths of my soul I know we are supposed to have this baby. S(he) is a gift like all children are. I just struggle.
Here's the story though that gives me comfort:
I was driving home from the airport at midnight. I had just been working in LA and had had a wonderful successful time. On the trip I had kind of decided I was going to open an Educational Consulting business and try for my charter school full time. I had decided that we weren't going to have more kids because I was going to spend the rest of my life doing great things for others in the name of Nora and all she gave us. Then on my drive I had a huge breakdown. I cried the whole way home. I begged Nora for something. I told her I wasn't ok. I told her I needed her back. I told her life was nothing without her. I just begged her to do something about this gaping hole in my heart. I did this for an hour and a half. The next day I found out we were pregnant. So this baby is the balm for my soul. It is the gift Nora gave me. I am grateful despite all my other feelings.
Precious Nora,
I miss you everyday and every second. Part of my soul feels missing since you have been gone. I will never forget you and you will always be in my heart. Thank you for taking care of our family. I can't wait to see what a great guardian angel you will be and have been for this child growing inside me. I couldn't ask for a better guardian.
Love you,
Mommy

The Valley

I have a heard and experienced states of grace. Those are the times in which you should be pulling your hair out but by some miracle you are not. Well sometimes those comforting times wax and wane. When Nora first died and for a long time after there was a lot of grace to handle the pain. I don't know if it is the pregnancy hormones surging through my body or the fact I can't decompress with a glass of wine or f it has just been long enough that I am beginning to feel Nora slipping away, but these days have been hard. I know I can write bravely about my feeling and meaning and purpose and I know all of it to be true but sometimes the rubber hits the road and it hurts.
When Nora died it was like the wind got knocked out of me and I was stunned. Now it is like I can't breathe. Waking up is hard, going to bed is hard, not to mention everything else in between. It is not just hard it is almost impossible. There is joy in small things but it is fast fleeting. This pregnancy as wonderful as it is truly is an emotional mine field to maneuver as well.
This is just a valley, there will be more mountains again. I will survive this season. We will survive this season. It just plain hurts these days.

Easter

This is what we relive on Easter. Although this weekend wasn't actually Easter, it was still littered with similarities for us. I knew on Friday that it was like Good Friday. I knew on Saturday it was like Holy Saturday. Then I knew on Sunday we were going to get a miracle or Nora was going to go home. I don't know why I knew that. I think God prepares us for the times we need preparation for. Having this analogy in my head as we experienced these days was comforting in a way I can't explain. When Nora was born I thought Jesus was a good man and that was it. By the end I now know what that man gave us was so much more than we could have asked for. He gave us the blessed assurance that we wouldn't rot in some miserable after life but that we would be blessed with a glorious life everlasting with our glorified bodies. He answered basic human questions that without being answered leave room for a lot of fear. Although painful this time is also a reminder of Nora's peaceful transition into a world that we can only dream of. I know where she is. I know she is happy. I am happy for her.
Good Friday

Friday, August 27, 2010 10:05
   

Nora is not well. She had a rough night and now is on a fentanyl drip so her respiratory
status stays acceptable. She is on 100% oxygen which isn't good for her heart
but we don't have any other options to keep her sats up. They are taking her
off feeds and starting her on TPN which is IV nutrition. They are stopping a vasodilator
and if her breathing improves significantly that is a really good sign that she
will do well on the 1st. But even that procedure may get put on hold. Unless
she is well they will not do the procedure until she is. Her left lung is just
very very sick and they don't know why.



I am scared but at peace at the same time. I wish she didn't have to go through
this but she still wants to keep going. I hate seeing her so doped up but
seeing her struggle to breathe is a thousand times worse. It is the worst it
has ever been but that doesn't mean it is not too much. I have heard stories of
kids worse off than her getting better and going home so keep praying and
believing and hoping. All your selfless love for Nora is tangible to her and it
keeps her going.



mom



This is a spiritual/philosophical journal note:

I prayed yesterday on the way to the hospital that God not spare us anything we
need to experience to become who we need to be. (crazy brash prayer i might
want to take back) What do they say about gold being tested in fire ... call me
crazy but I want to be gold. Praying for healing would be awesome but we might
miss out on what God has in store for us. I watch her suffer and I feel so
close to our creator. I understand what love really is in a way I never could
imagine. There is a willful determination to be selfless. It is so hard to sit
with her and watch her thrash, cry, and shake. Watching someone suffer so much
you become numb to feelings even of love and it becomes more than just a
feeling. It is a knowledge that we are inexplicable intertwined and connected.
I feel so connected to Nora as if I know her very soul and I know it is our
love that bonds us like that. I keep going back to "even miracles take a
little time." This is a process for all of us. Hopefully we will be gold
by the end.

Friday, August 27, 2010 5:58
   

Nora is doing so poorly that they won't do the cath procedure. Our option now is
transplant. We need to decide where ... mayo or st. louis, missouri. we know
the pro and cons of both and are carefully weighing them now. She may even need
and heart and lung transplant considering the poor function of her left lung.

Please pray she improves enough to qualify and be a good candidate.

Thank God we had friends and family here today and a one showed up
after the news ... the support is incredible but this is our lowest point and i
am utterly heartbroken ... 5 weeks ago she was so perfectly healthy and just a
few days ago she was smiling.

mom

Holy Saturday

Saturday, August 28, 2010 1:35
     

Nora is doing very poorly.  We have heard back from Mayo, and Nora is not a
candiate for a heart transplant.  The Dr.s here are doing what ever they
can to make her comfortable. 


Molly is rocking Nora now and loving her up.



-dad

Saturday, August 28, 2010 10:13
    

Nora is still on the cusp ... she could go either way at this point. This morning they
wanted to put a kidney dialysis port in her tummy while under anesthesia but
they weren't sure if it would help. I said I didn't want that. She is so
fragile and does not do well with anesthesia and I didn't want her to die in
surgery. They understood and gave us many kudos for not wanting our daughter to
suffer needlessly. They all said we were very selfless. Man am I glad I said no
because she started peeing up a storm today. Before she started peeing we
talked about how we want to handle this and we agreed to no chest compressions
if she went downhill. They said she might have 24 hours.

It is hard to see her because she is fully sedated and they give her muscle
relaxers so she will let the vent breathe for her otherwise she bears down and
fights against it.

We still don't know what this will bring. At this point we need a miracle and a
big one at that. She will not qualify for heart transplant because her lung is
not well and a heart and lung transplant is so risky and invasive that we
wouldn't want to put her through that if she were to even qualify. Any surgery
is risky much less ones that big.

Aaron is in bed with her now and I just got done with my turn.

I asked Evie yesterday if she knew why mom was so sad and she said "
Yeah... because so she might die from the operation"

Breaks my heart. We hung out with Evie all day in the hospital room which
was good for her and us as a family.

Tomorrow is Sunday and I hope, yes I still have hope, is for a Easter morning
type miracle. I am summoning the spirit of Mother Theresa the toughest most
compassionate woman I know of for anything we may need to get us through the
night.

Thank you for the encouragement. I can't even begin to tell you how hard this
is. Wisdom and peace are much needed.

Thank You!

mama

Easter Sunday

Sunday, August 29, 2010 8:30
     

"Just keep swimming. Just keep swimming." Dory from Finding Nemo.

I feel like this morning is Easter Sunday. Nora's numbers are all better!
Her chest x-ray is a bit better. She still holds her breath and drops her sats
... down to 30 this morning ... eek but paralytics stop her from doing that and
her sats come back up.



I truly believe if we had placed the port as they recommended, she wouldn't
have made it. We let her make the decision if she wanted to be here as
much as we wanted her to be here. And she started peeing again! The issue really
was her kidneys had stopped working. She was soooo puffy and it was killing
her. Her blood gases were terrible. I couldn't put her through one more thing
and the doctors thanked me this morning for not letting them do that to her. It
would have been for naught. I guess the anesthesiologist said to the top doc
"That is one amazing mother." I just plain love her. We
let our daughter go to our creator and love gave her back to us.

We don't know what this all means. It may mean that they will get her stable
and send us home ... Or they may try to fix her heart once she is more stable
... we will have to see. Even just one more day with Nora is such a gift. Thank
you Nora for choosing to stay with us. We love you so much! Thank you for all
your prayers, energy, good vibes, and thoughts ... they add up to one supported
family that feels utterly blessed.

"No matter how your heart is grieving, if you just keep believing the
dreams that you wish will come true." Cinderella (thank God Evie loves
Cinderella so much or else I would be missing out on a lot of great quotes ;) )

Mom and Dad 

Sunday, August 29, 2010 4:37
 

Nora took a turn for the worse again this afternoon. She stopped peeing again. She
is so sedated and drugged. They keep going up on sedation and pain meds. I know
she doesn't like to be drugged, even one of the nurses told me that. She would
cry as we gave her morphine because she is sooo social. She loves to interact.
I know she wouldn't want to live like this for long. She is miserable underneath.
I hate the drugs because I can't tell what she is telling me either but going
without the sedation is not an option.

Her sats went down to the 60s today on 100% oxygen and we had to have a talk. I
agreed to do anything none invasive that won't cause more pain. SO as well as
dopamine she is now on epinephrine and we put her back on nitric oxide and
started a protein that may help keep the fluid in her circulatory system versus
coming out into her tissues. I just don't know ... no one is very optimistic
about anything but things we are trying are reasonable. The goal is to keep her
comfortable and see if she gets better or worse. If they get worse we will have
to make some tough decisions like how to withdraw support. We never wanted to
be here ever.

Meantime we cuddle and kiss. 

Thank you Thank you Thank you ... we feel, know, and are held up by your
support. I just keep hoping our love would be enough to make her broken little
body whole. I just pray that she lets us know and we have peace about
it.

god's grace surround us tonight

mom 

Sunday, August 29, 2010 6:25
    

Nora has just earned her angel wings.



She had been sedated for most the day, Molly and I were laying in bed with her
and she opened her eyes and looked at us and shook her head no.  She told
us it was time and she went peacefully.

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.