6-25-09 - Cleared For (most) Physical Activity

I know it has been a while since last I updated this blog. So many beautiful miracles have happend, so many tears shed as images float to the top of the sea of memories, so many goodbyes and so many new lights arriving.

Orien Rose has just finished fourth grade. Academics throughout the year show consistent improvement. She is smart, she relates well to adults, she needs help focusing. These are the things the teachers say. She knows her stuff, she just can't always do it. So how do we handle that? The school has been wonderful in meeting with us, talking to us, walking us through the modifications that will help Orien Rose to focus and get done what she needs to. We have butted heads slightly when it comes to the organizational aspects, but all in all we are so enamoured with the whole situation this year!

On Monday, after returning from our annual spiritual retreat, Orien Rose and I took a trip to RI to meet with Neuro and Plastics. Both have given the okay for physical activity. However, because there is a small protrusion in the eye area (the piece they reconstructed with bone), Orien Rose cannot do sports where it is inevitable she will get hit/kicked in the head. So Tae Kwon Do is modified...no soccer. She can, however, play at recess and participate in PE. She will go back to horseback riding, starting this summer!

She told me on Tuesday, "Mom, this is the best day of my life. I get to ride my bike for the first time in two years! I get to go back on the big bus! I get to play with the kids at recess."

After meeting with the CSE on Wednesday morning, her teacher told me she couldn't wait to get back to school just to see Orien Rose playing outside with the other kids! For an active kid, it has been a hard two years of sendentary times.

Some people have left our lives, for whatever reasons they need to. I pray only that they find whatever peace they need and hope that the space we took up in their lives gets filled by immense love, power, solidity and consistency. Orien Rose understands. She is amazing like that!

As always, we are aware of our blessings, of those of you who still reach out and ask about us. We feel the energy and the love. We are appreciative. Thank you all so much!!

Call out for writings

Hello Folks,
I am currently working on the book about Orien Rose's accident. It is not an easy task, by any means, but I have someone who is loving, caring and has the ability to step outside of it helping me out. There has been some distance and time since the accident, and life is taking on some semblance of normalcy, that is has been suggested that now would be a good time to start putting it together.

In discussing the intention of this book it seems there are a lot of facets. I want to tell the story of the courageous little girl, the hospital experience and the importance of community. I want to include the massive amount of support as well as what the journey has taught us. I want to include the energy of Magic, the energy of Athena's, the energy of Emergence theories/actualities.

I have kept every email we received during that time. During this process, I will go over those emails again and re-read them. I have access to all the comments on each blog I posted, and I will review them as well as I put together this story.

I am contacting hospital staff, including some nurses, ER doctors, security staff, her medical team (both PICU and the floor) as well as people from the Ronald McDonald house to ask them to discuss with me their experience with Orien Rose and us. We have been contacted, and have done, quite a few PR pieces for them.

What I am writing to ask is, would YOU please consider writing a piece for me to be included in the book? I want to know what it was like for you to hear about the accident, what you did in response to it, how you stayed connected (or couldn't deal), how you were/are affected by it. Please let us know if anything in your life has changed because of it.

Please email me ASAP to let me know whether or not you would be willing to do so. Please also let me know if you would like your name attached to it or have it be anonymous. Then, should you decide to, you can email the piece to me.

Thank you so much for being a part of this!

Blessings
Christine

11-17-08 Happy Birthday Orien Rose

11-17-08

She is 10 years old today. To think that not too long ago, we weren’t sure if she was still going to be with us! Then I think, she is a miracle child all around as I have been told over and over by doctor’s that I can’t have children…or that it would be very difficult and a lot of work. When they find out I had a child, they are surprised.

Prayer, magic, and a lot of connection brought her to us! A gift from the Divine. When I look at the symbol Orien and I use as our wedding ring, as the totem of our love, it makes so much sense. Protection and family, protection of family, and a gift was conceived in the symbol by the mere combining! Othala (mine), Algiz (Orien’s), Gebo (Orien Rose). We are grateful!

Each year, I remember the process of Orien Rose’s birth, the many hours of labor beginning early on the morning of the 16th. So, yesterday I woke up around 5am, went back to sleep and stirred every so often reliving the moments I knew were going to bring something special! Yesterday I remembered the positions I sat in, the baths I took, the walking and rocking, the people in the room with me. This morning, as I write this, Orien Rose has already been born, merely minutes old and already she has been in the arms of Sam, my mother, Kenny, Tom, Orien and myself. Already, she is surrounded by a community of people who have committed to love her. Already, she is hearing the songs that will be sung to her and the drums that danced with her in my belly.

Of course, I am reminiscing about our lives together and wondering how a decade went by so fast. Orien Rose doesn’t talk of much before her accident. As I think on time and age, it has occurred to me that these past few years for her must seem like an eternity. I wonder if she thinks this is all her life has been about. When we have discussed it, she says it is harder to remember a time where the accident doesn’t intrude. There was a time before it, though. There was a time when we walked the streets of Warwick: to the Kid’s clothing shop, the Bookstore, Café a la Mode to get ice cream, and up the street to see friends. There was a time when Orien Rose jumped on the trampoline and ran around the yard, rode her bike and swung on the tire swing where we reside now! As we talk, I sometimes try to direct the conversation in that way, to pre-accident time. She does remember, as we drive through Warwick, the streets where we visited people. She does remember, as we pass the house we used to live in, the kids she played with from next door, but unless we are there, unless there is a reminder, she doesn’t bring it up anymore.

Recently, as we embarked on Halloween to our destination, she remembered going to the bungalow down the way and trick-or-treating! She remembered getting a baggy of goodies. She asked if we could go again this year. She forgot that the same person doesn’t live there. Her mind, in some respects, is fragmented and I wonder if this is just normal kid stuff. She has stopped asking about people who don’t come around any more. She has her files and she retrieves them when she needs. Right now, she is occupied with making the best of the people who are right here, right now. It is a beautiful lesson to learn from her! And again I think, is this a result of her accident, is this normal kid stuff, is this the enlightened person that she is? Either way, she is a great teacher!

Then I speak with her teachers about her homework, the length of time it takes, the complaints she has and they say, “Congratulations, you have a normal fourth grader!” I am grateful, but still too cautious not to lose sight that things have changed for her. She still comes home frustrated and crying. Homework, unless I am right there with her every moment, will take her hours. And I struggle to help her stay connected, and then I wish Orien were there, because he is so much better at it. “It just keeps getting harder,” she says to me. I sigh and think, and it will continue to. Then I wonder if that is the truth as I think in Emergence terms. Does it have to? There is a way to stay connected, to enjoy the learning. What is the rush? But these are thoughts better left for another type of writing.

Orien Rose is almost finished with her step down of medication. Orien Rose is getting taller by the day. She is growing up fast. She is learning quickly. She is asking questions about life. She is learning that often, things change. She is making good friends at school and dealing with the hurt of kids who are not so nice.

The time it took her to get here is much longer than the time it will take for her to become a teenager. I realize that my time with her is short. I try, especially when I get frustrated, to remember this! It has shaped my decision for further schooling. What is the rush!? I don’t want to miss her growing up, her years of transition, her struggles and triumphs. I want to be the most connected, present Mother that I can be.

Right here, right now, Orien Rose is at school. She is loving her life. She screamed as she saw we got her Rock Band for her birthday. This morning, however, as I give her a smaller gift so she has something on her birthday she says, “You guys have given me the BEST GIFT EVER!” As I am putting on her new scarf, hat and gloves, I am thinking she is talking about the Rock Band set we gave her two days ago at her party. I say, “What is that?” And she says, “Your love!”

10-28-08

10-28-08

They come less frequently now, these updates, though people still ask for them. I am wondering what to write, as our lives fill up with normal activity. We are blessed, all of us, for what we have come through, and we honor those blessings each day by fighting for the connection, staying connected and living in the joy rather than the pain or drama or hurt or blame.

Orien and I have learned so many new things about ourselves and our relationship. I know that situations like this can either tear people apart or bring them together and I am happy to say that he and I are stronger than ever in our convictions and priorities. It is simple for us. Our family, our health (including mental) comes first. We are more careful now how we spend our energy and we definitely don’t give it away as easily as we used to. Perhaps that is our major lesson in all of this: How we give our energy away.

The Emergence work we have done has been amazing for both of us and has increased the depth of our journey through all of this. We are less tolerant of blame and finger pointing and more interested in connecting in the moment, because really…that is all there is. Healing doesn’t happen in blame. Healing doesn’t happen in trying to deny self-responsibility and making a situation someone else’s fault. Healing doesn’t happen in rehashing the “precise and correct” details of events of the past, and boy are he and I good at that. Healing is in being connected. Healing is in the moment, in the now. There is no fault if there is connection. Healing comes from seeing who you are talking to, for who they are, not who you want them to be. Healing comes from slowing down and owning, and learning from, your suffering, not trying to run from it. This we have experienced over and over as we struggled in moments of frustration, pain, confusion, dismay, and powerlessness. Suffering is necessary for growth, and we have found joy in our suffering. Misery is an option, and it is one we do not choose.

So, I guess this update is more about what we have learned, and how we have learned to connect through the suffering. I see the quality of people in our lives today and I am in awe that I had half closed my eyes to it before. I am in awe that I was afraid to let it in, to feel the full capacity of people’s love. And even more amazing to me is that it hasn’t stopped.

The Universe has given us a great opportunity in Orien Rose’s accident. It has increased our capacity to love, it has decreased our tolerance of blame, it has increased our ability to stay connected and to fight for the connection and to take joy in our suffering.

Orien Rose is going through her own journey as she settles into her life sans helmet. She feels like she has friends this year. She expresses deep thoughts about pain and suffering. A few months back, she told me about a boy in her class who was teasing her. He told her that people didn’t like her and I asked her if she thought it was true. She said, “No Mommy, I know I have friends. I don’t think he was having such a great day, and I think he doesn’t have a great home life. I am going to talk to him tomorrow and make him my friend, too.” He was mean, and she wants to be friends with him. She stepped into his shoes and looked for the cause of his pain. We talked about it some more, and I made sure to express that I was proud of her for what she was doing. I also told her, however, that if he continued to be mean, there may be a point where she would have to let it/him go and let him figure it out for himself because she couldn’t do it for him. Being compassionate and empathetic is beautiful. Being a doormat is not.

And that was a very protective moment for me, which of course led me to look at myself and the people I have allowed (or perhaps I healed an injury?) to berate me with their own feelings of self-righteousness that has stemmed from their pain. I took strength from my daughter’s ability to see blame for what it is, and made a conscious decision not to be abused any longer by someone else’s blame. Her journey amazes me, it changes me.

Orien Rose is doing okay in school. We have a meeting tomorrow to get some clarification on schoolwork, homework, tools she has available to her. The last CSE meeting was held without us. We were away when the letter came, and it had only given us a few days notice. Now, I don’t think I am so happy about that.

There is frustration for her in the length of time it takes to do her homework. Some nights, we are at it for four and a half hours. This is for three sheets of homework! Of course, coming from my schooling, I know what a traumatic brain injury does to processing speed. I do my research, but I am determined to help her through this.

As we continue the journey, Orien Rose is being stepped off the Dilantin. She is more than half way through the step down, and so far so good. This part of the process definitely scares me, as we are consistently on the look out for seizure activity. She has been below therapeutic dose for weeks, though. Once the step down is complete, which will be right before Thanksgiving, the next six months are critical.

Between Thanksgiving and our trip to Greece (a trip Orien Rose, Orien and I are much needing), we will be keeping a close watch on Orien Rose. From the six month period, we have another year and a half to go. The neurologist says that most activity will happen within the first six months, but that it can happen up to two years. If a seizure happens after two years, it is most likely coming from something else. There have been NO SEIZURES, and we are putting our energy in that direction.

So, if you are still sending us energy, please focus on healthy brain activity and healing to increase processing speed AND for healthy firing. Know that we think on you everyday and count our blessings for those of you who have reached out. Know that we pray for you and your families. Know that we have love in our hearts for you. Your energy has been well spent on keeping us together, healthy, alive and healing!