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.