Blog Envy or Thank You Lissylou!

Thank you, thank you Lissylou for saving me from the void! Ok - it's official. I have had my first comment from a person I did not coerce, at least not directly. My sweet husband was the first to comment, but only because I threatened the usual things a wife threatens her husband with when she wants him to do something for her. You know - castration, over starching the shirts, getting a boy toy. And my dear friend commented because I asked him to. Ok, so I was a little desperate as you can see from my Pitter Patter post.

Lissylou you are proof that Ryn Tales is not the black hole of the web as I had feared. Though it may still be like Pluto – not quite a real planet. Ryn Tales - not quite a real blog. (Hey, does this mean I have blog envy?)

Seriously, you made my day! Thanks for the words of encouragement.

P.S. I was joking about threatening my husband. I have no idea how to starch a shirt.

P.S.S. However, if any reader would like to comment on the process I would be better for the knowing. It couldn't hurt. You never know when the angry ghost of some fictional TV character like June Cleaver might try to invade your body just to get in some cathartic domestic tasks for old times sake.

Dancing with Death

Tonight I had a discussion about love and fear. It was illuminating because fear as it turns out is multifaceted and not just something to be reckoned with or avoided at all costs. As it turns out fear is something I have had a great deal of experience with over the last 4 years. Fear is something that can go hand in hand with love.

When Ellie was born I learned to dance with Death. When I was pregnant with Ellie I knew within the first month of the pregnancy that she, was a she. I knew her name was Ellie and that she would need braces on her legs. I knew this because I was dead tired the whole first trimester (while my body was busily doubling my blood volume) and one day after work I was lying down to take a nap and as I was falling asleep, I put my hand over my belly and asked, "Who are you?" And in a flash I saw this girl in a plaid blue and green skirt, white shirt and blue sweater with braces on her legs and she looked a lot like Dave and she told me her name was Ellie. So that was that. From that point on I would say, "Ok Ellie, we are going to take walk now, or go to work." I had this running conversation with her.

Then at 27 weeks and 5 days gestation she was born in a torrent of blood and chaos and zero oxygen. It was as if my normally developing baby and what my doctor just 4 days before had called a "boringly healthy pregnancy" had been in a train wreck. Her APGARS were 0,5, 6. On day 2 of life she had a brain bleed in her ventricles classified as a grade 3. The doctors told us she would not make it through the next hour, then the night, then the day, then the week, then the month. They told us she would be a vegetable if she lived at all.

So instead of having a third trimester that would lead to birth and breastfeeding and carrying her around and eventually seeing her run and play I got to dance with Death. I would sit by her incubator and talk to her silently, because even the softest noises would make the oxygen saturation in her blood plummet. Any NICU mom's out there know what monitors I am talking about. But I would sit there and carry on my silent conversation with her. Death would be sitting right next to me. I don't know what it was saying to her. I would say to her - if you want to stay - it's going to be a rough road - but I would be so, so happy and we will figure it all out together and be with you 100 gazillion percent. But if you are not supposed to stay, I will love you always, but don't let a mother's wish keep you. I am not sure what Death thought of that either.

The NICU stay lasted 133 days and two weeks after our release we had more visits by Death when the neurosurgeon at Cedars Sinai in LA did not check to see if the shunt he had placed to control her acquired hydrocephalus was working. From this she sustained more brain damage and his attempt to fix it raises eyebrows to this day by the excellent neuro team at Boston Children's. So there were a few more brain surgeries where Ellie would be under the knife and I would be dancing with Death. Dave and I would wait in the stark, fluorescent lit waiting areas and we would both close our eyes and try to imagine being in the room with her and imploring all the angels and inner guides in the universe in any shape or form to assist and keep her with us. I would feel Death's hand on my shoulder. Death's hand felt pretty cold and pretty familiar at this point. It did not shake off easily so I just accepted Its presence.

Acquired hydrocephalus is a nasty thing. For the first 2 years of her life we were in the hospital on a weekly basis because the symptoms of pressure on the brain are distinct and she had them a lot.

So when I hear people talking about fear and love I know they are forever intertwined. I have not, as a new mother, been able to separate them. They do a dance and I am taken along. But having become so intimate with fear and the possibility of death has made me learn to love more. To love from the present moment to the very deep depths of my soul. That is how I love Ellie every day. Completely here and now and deep, deep, deep. I know some parents in the same situation keep their distance, try not to get attached, buy into what the doctors say, and rarely come to the NICU. And fair play to them. There are a lot of people like this out there in not so severe situations deciding to hold back on loving someone because of fear of some sort of death - la petit morte. But I chose to dive right in, though it wasn't really a choice for me or Dave. People say we are amazing parents and it's amazing what we have all been through and how well Ellie has done. But in truth, we could not have done otherwise because we dove head long into the deep well of love for her that was our guide. So we stayed in the NICU every day for 133 days for 20 hours per day or on bad days the entire day taking shifts, sleeping in our car in the parking garage or not sleeping at all. We bought medical texts to educate ourselves in all the doctor speak so we could make informed decisions. We looked in our hearts and knew she would be amazing. We keep our hope for her and science's new discoveries that may help her brain heal.

I am so glad she decided to stay. I am so thankful she is not a vegetable. Today she communicated to me that she did not want me to sign choices to her but to write the words down for her to pick from on her magna doodle board. The astounding thing is that when I obliged she knew the words and picked what she needed. Ok - so she's not even four yet and can read words I didn't know she knew and has picked this up from somewhere - the books we read to her, the labels on her toys. Death can hang out all it wants, but Ellie has a path of her own and is sticking stubbornly to it - Death be damned. This is why I think of her as my little angel who delivered me from death by staying alive.

Being married, being me and the in between

Why, at times, does my husband remind me of my father? Creepy as that is, it might not be him but me. My reaction to getting directed on things that I am perfectly competent at and might have actually taught him a thing or two about is, you could say, a bit strong. I married the oldest child you see and he had a lot of responsibility growing up looking after his siblings. So naturally, he is a bit bossy. But still, for crying out loud, I don’t need just in time lessons on how to drive while driving or load up the wood stove. I grew up with a two wood stoves in a house solely heated by wood. He grew up in a centrally gas heated row house in Dublin. Who knows more about wood and wood stoves? That would be me. He did not even know what kindling was until I told him or how to start a fire until I taught him. I yi yi. But still, another girl might think it’s cute. Another woman might not mind being told how to do every day things by men. Maybe it's because of #11 in the about me post.

But why me? Is this normal to get so much direction? Or for some reason do I look entirely incompetent? Do I somehow attract question and a need in men to “help” my sorry ass? I would really like to know. Or are they just all this way – ever helpful and know all and hovering? But of course not so much when it comes to taking out the garbage or lifting the heavy stuff. Sigh.

Ah, well, we have been married almost a year now and I still think he is great. And I know I get most annoyed at him when I am so tired I think my face is going to fall off. So you tell me. In the mean time, I will go on proving my competence and suffering suggestion on every day things. Maybe I will even learn a thing or two.

About Me

This is the stuff I could not fit into the "about me" bit in the profile. Probably way more than you want to know - but this is my blog so read it or no. But there it is.
Important things you should know about me.

1. I am a 30 something New Englander turned Los Angeles transplant, mother of one, wife of an Irish guy, artist turned organization psychologist. I live in the burbs which are geographically close to the best children’s medicine in the world though sadly plagued with a long forgotten hideous thing called winter and an astounding and tedious amount of white bread snobbery and haughty pretension.
2. For the record, I miss diverse, open, anything goes, 76 degrees and sunny every day, fresh fruit and veg everywhere, beach walking, night clubbing, insane freeway driving, smiling, raw food eating, moveable feasting, we will coo over your baby even with all the tubes sticking out of her Los Angeles. But alas, we are here for good purpose and no good deeds goes unpunished. Such is life and more that you can read about here at Ryn Tales. Also known as the black hole of the web, where posts go to die and a writer can communicate complex life events completely in fragments to no one. Ms. Russo, eat your heart out.
3. I am relatively sure I was switched at birth, which would explain why in my mind as a toddler I referred to my nuclear family as "those people" and never felt myself really “one of them”. In psychology this is called feeling marginalized. And, just to be clear, I love them anyway with all the diabolical preconditioned DNA magic that god gave me. Damn her!
4. As it turns out being marginalized is a great background for being an organizational psychologist, which is how I prefer to make a living, helping other people not be so marginalized and more effective at work.
5. I am married and live with my wonderful husband Dave (Don’t gag. He really is great though he snores and is really stubborn and tries to wear his tee shirts twice when he is really a once wear man) and my beautiful elfin daughter Ellie.
6. I write a lot of bad poetry which I may share on this site.
7. I write a lot of bad pros which I have been sharing.
8. My first love is art as in oil painting. I did it for awhile as a profession but could not stomach dealing with 50 something menapausal gallery owners who treated me like dirt or the customers who are more concerned with my painting matching their beige leather sectional than the quality of my art and lastly, the people who would come to my shows and say, "wow, those trees are eerie" or, "Is she into devil worship?" (No! Why is painting trees about the devil?), and other equally stupid comments.
9. I have a painting studio waiting to be used. I will keep you posted.
10. I started my blog to communicate with and inform other parents of my experiences as a mom of a child with cerebral palsy.
11. I use my blog for the purpose above but also to vent and muse about life.
12. I am ABD, which is different from ADD or AHDH, but not really. The point is that I actually finished my dissertation, but my ratbastard chauvenist pig of a frustrated barely published lame ass professor, D.M., intentionally sabotaged me during my final defense and then I had Ellie and then we were in the NICU for 133 days and dealing with a child being near death for the first 2 years of her life and it’s only since the start of this year that she is sleeping through the night at 3 and a half…so you see I have not finished revising it…. But anywho, I kick ass at organizational development and love, love, love that work with a passion!
13. I had the highest IQ in my 7th grade class. I know this because my friend Cathy looked in her teacher dad’s brief case and then told everyone their results.
14. I was state champion bicycle racer in road race and time trial for 3 years in a row as a junior
15. I take an eastern approach to spirituality, which totally filters the way I view the world. It includes a belief in karma and past lives and soul travel and life beyond this one as well as a god who is not really interested in people's day to day bullshit. I can’t help it, my experiences are my guide. But I deplore the evangelical approach and strongly support respecting other people’s experiences and reality, even if it differs from mine.
16. I think George Bush is an incredible idiot and every time I see him I see a little beanie with helicopter like rotor on his head in multi color.
17. I flew small planes for awhile and loved it.

Pitter Patter

Free writings are such that the mind is unleashed and one can simply flow with the river of their thoughts. Futile to try to stop the tide. As one can sit by a river so one can sit within themselves and watch or listen to the great current that is their mental self. A juggernaut of natter always on except in the deepest of sleep and most interesting in the song of dreams. By day, mostly meaningless white noise peppered with Freudian-like popups of potentially important things. Important to whom, though? Blah, blah, blah, blah blah.... So why chart it? Why try to capture it in a free writing? Why is this post even about a free writing when the entire thing is supposed to be dedicated to my daughter and our life as parents raising a child with disabilities? Does it really matter, since no one reads this blog anyway? So I can unleash all of this into the void. The black hole of the web, also known as my blog - ryn tales.

Anyway, free we are to write and write whatever, whenever, from wherever. Gotta love modern technology -transcending space and time to allow for instant gratification and communication - even the tracking of one's meaningless mental chatter.

Invisible reader, forgive me if you exist at all.

The Impermanent Self

Rychlak said that the self is as impermanent as the weather. It changes daily and transforms completely over time. At first I found this hard to digest, as a believer in a more permanent self I call soul. But over time I have seen Rychlak’s assertion come to pass. And, as it was upon first hearing, it is disturbing. But maybe that’s because I am sentimental. I try to cling to the past for those brief moments locked into imperfect memories that bring the illusion of comfort in the present.

I look at myself from a distance at times and wonder how did I get here? Why don’t I do this anymore or that? I am reminded of the “this and that’s” as I go through all of my belongings and every nook and cranny of the house searching for things to give away, throw away and organize. For too many years I have carried around about 50 pounds of clothes I never wear, books I feel pressure to read when I see them, but don’t want to read, items I feel obligated to keep but only remind me of unpleasant events. All of it, and I do mean all, has to go. And go as soon as I can get a charity to come to my door and take it. That day, for a three boxes and a bag is tomorrow. Hurray!

It was surprising however as I went through things the memories they brought back. The person I was. There were many old love letters and some blow off letters. God, if I could tell my 18-year-old self what I know now, none of those letters would have hurt at all. But that is the ever-changing self as well as the developing mind.

It’s been 3 months now that I have been self and clutter clearing. The big purge as it were. In doing so, I feel lighter and have more floor space. My mother, monitoring the inner channels only mothers can, simultaneously decided to clutter clear as well and brings me a new box each time I see her. But I must admit, the antique china and cut glass candle holders that were my Nana’s wedding gifts are way better than anything I have given away. And now I have somewhere to put them – kind of…

But that’s how it goes. Clutter clearing is good Feng Shui or as my husband pronounces it – Fang Shuueeey. In giving away all I am open to accepting the new. In accepting the impermanent self I am allowed to imagine a better self. So I am imagining a fantastic self: who is not afraid or uptight or stressed, who looks in the mirror and sees beauty all of the time not just in rare moments, who is full of abundance of heart and expects an abundant life, who is capable of living up to her highest potential and exercising daily her many gifts. Thanks Rychlak!

Dragonfly

Walden Pond is crystal clear. Was his thinking clarified by proximity to it's waters? The house was small but vast in it's ability to allow one space to breath and be. I understand what he meant about possessions weighing you down. I shared the crystal clear waters today with some fish, many, many dragonflies and several hundred children. There was nothing meditative about it. But I was revitalization by the waters, the sun, and the high pressure day. Taking care of one's soul is difficult when you are weighed down by obligations to people and things. A man said to me today, "You must take care of yourself first, because no one else will." He was right.

I was a bridesmaid this weekend last at my sister's wedding. For the record, I rather eat pigs brains then be a bridesmaid. I will do it if asked, but maybe if all my friends read this I will never get asked again. Blogs can be so useful. Anyway, in my experience, it is never fun. The dress always sucks and you are dealing with a Bride. All brides have a bit of a bridezilla in them - I did for about 5 minutes...that's a good story for another post. But despite the fact that my dress did not quite fit right and the stylist gave me a big 80's style updoo in the basement of the salon while my two sisters were getting their locks tamed into natural looking down doos upstairs...the wedding was a beautiful thing. I am happy she has found happiness. She's a great person who has lived through more than her share of hardship and she has found a guy with a big heart and a lot of love to give. She deserves it all and more.

Weddings, however, are for the bride and groom. Mine was for me and Dave, my friends were for them and this one was too from the cake made of doughnuts to the poetic personal vows. The experience for me was somewhat overshadowed by the family dynamics (read between the beauty parlor lines) and the fact that Ellie decided to add to the ceremony by screaming through the entire thing. Dave, not realizing how loud Ellie was and not receiving my telepathic pleas for him to bring her inside, kept walking with her back and forth just behind the group to ensure that her cries would be evenly dispersed amongst the wedding party. Her screams echoed against the amazing mountainous backdrop only to assault my selfconscious ears again and again. Never the less I lived to tell the tale. My sister's wedding really marked a turning point in my psychic liberation from the past. There will always be grief for me that my family is not one of those super close, we see each other for who we truly are families. But at least this time, I was able to see the family dynamics and not be completely consumed by them. In fact, there were a few times when I thought they were kind of funny. The experience of almost losing my daughter, living the last 8 years 3,000 miles away in Los Angeles and gaining a husband who loves me and looks for the best in me instead of the worst created an extra layer of protection, light enough to go unnoticed but strong enough to keep me safe. Ah for Teflon linings.

Handicap Placards and New Car Purchase in Summer's Heat

Metro West is a low land cauldron of summer heat. Air conditioners drone as the heat and humidity compete for what little oxygen is left in the atmosphere. People move slowly and perspire just the same. We take refuge in our ramshackle house that does not know what style it is and is perpetually in renovations. Walls knocked down in order to be able to see her at all times and get to her quickly if she is choking. Doorways widened to accommodate the "chair" and all windows and cabinets with lead removed. She already has brain damage - why add to the problem. Still it is our home - ours. Our refuge from the heat and outside world. It is quiet and accommodating and filled with the good vibes of happy past inhabitants. Babies born in the downstairs tub. Hand prints of children in the foundation. Nicks in the door frame from forbidden inside ball games. All happy bits of laughter and love haunting our house with a great benevolence. We are peaceful here.

The winds of change are blowing a cooler wind our way. This week we were able to acquire a car that will fit "the chair" and allow all the discs in my back to stay in place while getting her and out of the car. Now I sit higher on the road when I drive and in doing so feel less back pain. It took 7 months to get the handicap placard. The clerk at the RMV told me when I called after the customary month that the website says it will take that they were running two months behind and to call in two weeks. She said that they were usually two months behind. So I called two weeks later and another clerk told me that there was no record of the paper work. This put me over the edge. The RMV makes it a bit difficult for a handicap person or caretaker of such a person to get a handicap placard. First, you have to get a signed form from your doctor. This I have no problem with. But I do have a problem with the fact that it expires after one month. So tell you doctor not to date it. I got my first form signed by my child's doctor in December and then my child got sick and we were house bound. By the time I could have gone to the RMV it had expired. So I started again. So that is the first thing wrong. In February, I brought my daughter down, forms in hand only to be turned away by the clerk who jotted down the number of the medical advisory office and said I would have to come back to get the picture taken in another month once I was sent a letter telling me to come down. OK - a disabled person has to go to the RMV TWICE in order to access handicap parking spaces that were created for them! That is ridiculous. I should have right then and there asked to speak to a manager.

After one more month I called and that is when the clerk told me all of my child's records were lost. This is when I really got mad. I asked to speak to a manager. I communicated to her my story of woo in a near hysterical but strangely crystal clear coherent raised voice. She told me the clerk should have never turned us away when we went down there. I could hear an older man in the back ground expressing his outrage at our situation in a gravelly Boston accent in the background. In the end I had to have my doctor fill out the forms for the third time and fax them to this manager. She alerted the RMV that I would be coming down again and told me to ask for the manager when I arrived. I did so and upon arrival and a 2 minute wait they took Ellie's picture right away. We were out of there in 20 minutes. The placard arrived two days later. So there is some humanity in the RMV - you just have to find it.

For all parents of a disabled child - know this: if you have a handicap placard and you are buying a larger car to accommodate your child and all their equipment needs the law exempts you from paying sales or excise taxes. You will need your doctor to sign the RMV form 33 and bring it with you when you purchase the car. And if the dealer tells you they have never heard of it they are ignorant. Here is the link to that webpage: http://www.dor.state.ma.us/rul_reg/dir/dir_03_11.htm

The only reason we knew about this was because another parent of a disabled child told us. Take advantage of this!

Ok - there is my rant for the day regarding the RMV.

Introduction to Life with a "Special Child"

This blog is about my journey through life with a special needs child. Anyone who has read the bit about going to Italy or Holland knows what I mean. Anyone who hasn't can find out a little more by reading this blog. We (my husband, daughter, and I) have had many adventures thus far and have come to know quite a bit that might be helpful for other parents of not so able bodied children. We walk the medical path, the alternative path, the management path, and the healing path. We live in the healing paradigm, meaning we believe that our child's brain can heal versus just be managed as if it were in a static state. I will explore the consequences of the management paradigm, the fallibility of doctors and the medical paradigm and also focus on nutrition. Mostly, I will share what has worked for us to get our child to heal.

The perspective I am coming from can be understood through the avenue of language. Here are some thoughts on that.

Special. You have to love that word. Especially how "they" apply it to children or adults and everyone in between with disabilities. I have heard all kinds of politically correct (PC), corrections to using the terms normal and abnormal. PC terms used to describe my daughter who has cerebral palsy: differently abled, not typical, disabled, special needs, and handicapped. With their opposites - able bodied, typical, and normal.

What most parents of special needs kids, some therapists and nurses understand is that "special" means a great deal more. Special, in our world, refers to the fact that we live a life with an angel. Yes she is a kid. Yes she whines. Yes we have to learn to discern from a whine and an approximation of language so that we can discipline her at times and answer her at others. Angel, because it's a miracle that she is still here. Angel because she has opened our hearts wide enough to let a torrent of love in, painful as that can be to a new parent. What people don't get is that, sympathy is not necessary. We have not "fallen on hard times". If you come to understand our world you will be in awe of it. The spiritual, emotional and mental unfoldment is something to be in awe of.

When I think of special, I think of my daughter who amazes me daily with her courage, intelligence, love, and ability to extract joy from life. Someone said to me today that we were "low incidence" - meaning there are not a ton of kids like my daughter in the public school system. I think that there is a low incidence of kids with CP in the mainstream population centers like school, and the library, and on public streets because of poor accessibility. It horrifies me to think where all of these kids and people have been shunted away to. But yes, on the other hand, and thank God, most kids do not suffer traumatic brain injury at birth.

The most important realizations have come from conversations with other parents we have met along the way in the NICU, at the therapy centers we go to and the most surprising places. One mother ran after us in the Home Depot parking lot, her child in her "special" stroller bouncing along, because she spotted our daughter in her Kid Kart. That was a particulary excellent outreach move on her part. More pieces of the school navigation puzzle were answered by her - at just the right time. There is so much syncronicity or coincidence in our world it's quite weird at times how our struggles and questions get answered - even when we don't always ask them aloud. I would like to know more parents and kids in situations like ours, because it's a rather isolating thing to have gone to Holland when everyone else goes to Italy. So do chime in, any time! I will share what we have learned here. If any of it helps even one other mother or father or person in similar circumstances, then I have succeeded.