31 December 2011
30 December 2011
Best prognosis on getting the laptop back -- today at the earliest, Tuesday dependably. I am hoping for tomorrow.
Last week, last Friday, I took Julia to the pediatric dermatologist. It is one of those referrals that you wait months for. Funny, ridiculous, insane to wait months for a skin doc referral. Maybe I should say to wait for a referral for a condition that worsens and changes daily. When the referral and appointment was made I hoped that I'd have to cancel it because Julia was healed.
No such luck.
The doctor, an Asian woman, very nice skin, I had to notice, was very bright and condescending. I was asked to give the details of Julia's condition four times before seeing her -- first, written on a form, then to two nurses separately (one might have been a PA), then to the resident, and then to the doctor. I balked at the third retelling, asking to not have to repeat myself until I saw the doctor. The resident snapped back, "I am an doctor." And I stepped back but not as graciously as I might. No one had looked at Julia, they just wanted my words over and over again. I have only so many words. I don't change my story. And there is a point where I can hear that my explanations sound almost foolish. Added into my exasperation are the many phone calls to Julia's primary doctor and talks with receptionists and nurses where the same story has been told and retold. Bites, scratching, rash, nothing working with the itching, even without scratching, no healing.
The resident, very pregnant and clumsy getting around the small, not tiny but cluttered, examining room, did not take notes but circled the notes taken by the nurses. Really, it was the same story. She swept out of the room to the extent that she could sweep, and a few minutes later I could hear her conferring with the doctor right outside of the door to the examining room. She went through a check list of what it wasn't -- no scabies, probably no parasites, not an allergic reaction -- and commenting on my unpleasantness. Oy. Yes, I should have been more patient. I wanted answers from these people and my attitude was not helping that. I can justify and make excuses for myself, expect more from those medical professionals, but in the end I wanted information and help and my attitude however justified was not helping get what I came there for.
One more justification -- again, not a good one but one that is such an irritation to me -- is waiting for doctors. I was scheduled for 10 a.m. and asked to arrive at 9:45. We were on time, even a few minutes early since I knew I would have forms to fill out. Still, we were not taken to an examining room until 10:25, and then had to give the story to two nurses and the resident before seeing the doctor. I saw the doctor for about 20 minutes but that time didn't begin until after 11. Petty, yes. Irritating, yes.
Now on to the meat of the matter.
The most likely diagnosis was papular urticaria + neurotic excoriations with an element of dermatographism. And to translate that into something that resembles English:
Papular urticaria is a common and often annoying disorder manifested by chronic or recurrent papules caused by a hypersensitivity reaction to the bites of mosquitoes, fleas, bedbugs, and other insects. Individual papules may surround a wheal and display a central punctum.
Although the overall incidence rate is unknown, papular urticaria tends to be evident during spring and summer months; in some climates, such as that in San Francisco, California, this condition may affect children throughout the year. In addition, despite no known racial or sex predisposition, certain ethnic groups (specifically Asians) may be more predisposed to more intense reactions, and a small Nigerian study reported a slight female predominance for skin diseases such as papular urticaria and atopic dermatitis. This eruption is primarily self-limited, and children eventually outgrow this disease, probably through desensitization after multiple arthropod exposures. However, adults can be affected, albeit at a much lower rate.
Patients consciously create neurotic excoriations by repetitive scratching. Neurotic excoriations should be distinguished from dermatitis artefacta, in which patients create lesions for secondary gain. Neurotic excoriations can be initiated by some minor skin pathology, such as an insect bite, folliculitis, or acne, but it can also be independent of any pathology. Because no significant underlying pathology is present in the skin, neurotic excoriations are really a psychologic process with dermatologic manifestations. Many doctors lack an extensive understanding of neurotic excoriations and its treatment. The complex interplay of the mind and urge to create a neurotic excoriation even in 2010 continues to receive explication. Dermatologists are aware of this complex dynamic and continue to grapple with it.
Because patients create neurotic excoriations, the lesions have the quality of "an outside job," that is, clean, linear erosions, crusts, and scars that can be hypopigmented or hyperpigmented. The erosions and scars of neurotic excoriations often have irregular borders and are usually similar in size and shape. They occur on areas that the patient can scratch, particularly the extensor surfaces of the extremities, the face, and the upper part of the back. The distribution is bilateral and symmetric.
The manifestations of neurotic excoriations vary widely from unconscious picking at the skin to uncontrollable picking at lesions to remove imaginary foreign bodies. Picking is usually episodic and irregular, but it can be constant. The picking can have the quality of a ritual and may take place in a state of dissociation.
Dermographism or "skin writing") is a skin disorder seen in 4–5% of the population and is one of the most common types of urticaria, in which the skin becomes raised and inflamed when stroked, scratched, rubbed, and sometimes even slapped.
So, Julia is particularly sensitive to bed bug bites, has very sensitive skin, and has scratched herself into a skin condition. The good doctor did not bother explaining this at all. If she had, I guess I could have said, "duh"!
Do I sound disgruntled? I am annoyed. I was annoyed when I was at the appointment and as I dissect the opinion, I am more so. The patient instructions are no better.
The doctor poo-pooed the herbal Wound and Itch Ointment that we've been using. That fact, that I told her, that it is the only over the counter remedy for itching that has worked with Julia, made no different. She suggested Eucerin Calming Cream, Aveeno, Calming Cream, Sarna lotion and ice. The Sarna, which works very well for Julia on bug bites is of no use. Ice it great but it only works if an adult is sitting right next to her. She does not reach for it on her own no matter how many reminders are around her. The sentence that says that the picking can take place in dissociation is particularly relevant.
The doctor prescribed a stronger steroid cream which I am using very judiciously twice a day. It does shrink the sores and it is the most useful part of patient instructions.
The doctor upped Julia's dosage of ceritirizine from 10 mg in the morning to 10 in the morning and 20 at night. Cetirizine is an antihistamine that reduces the natural chemical histamine in the body. Histamine can produce symptoms of sneezing, itching, watery eyes, and runny nose. It is used to treat cold or allergy symptoms such as sneezing, itching, watery eyes, or runny nose. Cetirizine is also used to treat itching and swelling caused by hives. The 10 mgs during the day seem to help Julia, however even 10 mgs at night make it impossible for her to sleep and after a dose at night (10 mg) and another dose in the morning, she was hyperactive all day.
The doctor advised that I spray Off or another insect repellent on Julia twice a day. She explained (although she did not write this down in patient instructions) that body mites may be aiding in the reinfecting of the skin and contributing to the secondary papules or bumps that appear as a sore heals. I am spraying her as instructed just in case this mite theory is true but it sounds to me more like something that I am suppose to believe in without proof. Thus, carrying stones and crystals seem as likely, if not more, to aid in Julia's healing.
The final instruction is to "wet wrap" Julia at night to decrease the inflammation, hydrate the skin and provide a physical barrier to discourage scratching. This is in lieu of the band aids and bandages that I put on Julia, which were also poo-pooed by the doctor.
This procedure might work in a hospital with a heavily sedated patient, but with a 10 year old with cognitive challenges and hyperactive on antihistamines, it is a bust.
The directions: Soak in a warm, not hot, bath for five to ten minutes. Shake off excess water and apply the prescribed medication to the damp skin withing 2 to 5 minutes after leaving the bath. Immediately after the medication is applied, put on moistened , 100% cotton tightly fitted long underwear. The long underwear should be immersed in very warm water and wrung out so that it is very damp but not dripping wet. This layer should hold moisture for 6-8 hours. If it begins to dry out, wet it again. Next, apply a dray 100% cotton sweat suit over the moistened layer. This layer is to prevent the wet layer from drying out. If hands or feet are involved, wet, white cotton socks and wet dermpak gauze gloves. Note: You may become chilled while wearing the wet wraps so use extra blankets for warmth. Although the doctor said that this would be comfortable, no one else I've talked to thinks so. I don't think so.
Julia does not want to wear wet clothes at night. My attempt to put wet socks on her was a failure. I would like to try it for one foot and one wrist, both of which she scratches at night and both of which resist healing. I have not figured that out.
So much for experts. I debate whether to call the doctor back to ask for help with the antihistamine and suggestions regarding the wet wraps. I don't know whether she will be of help.
And one more thing. Before the end of the appointment, I mentioned Julia's struggles with her early life and trauma. The doctor clearly stated that she was looking at only the physical conditions. "Let's treat her skin first and worry about the rest later." Maybe this statement, more than anything else, forces me to believe that I do not have an ally here. In the information I just copied, it says: "Many doctors lack an extensive understanding of neurotic excoriations and its treatment." So, even after the doctor provided the diagnosis, she appears to lack the exact understanding stated. She wanted pure physical explanations and solutions, and that is all she intends to help us with.
It strikes me that in David's case, we looked for a purely physical solution. That is, he got the replacement part, a new heart, and then pushed himself to resume the life that he had known before his heart started failing. I cannot blame him or me or us for this. It was our nature. We have not been afflicted with disability that changes a life or that molds a life into a particular form. I have always fought my stuttering -- not that stuttering can compare to a failing heart or a damaged brain -- but it was the only disability that I/we knew intimately. Bully our way through. Fight to be like normal. Don't feel sorry for yourself, just do what needs to be done. All of that echos in my head when I think of my life. David's life. And all of that failed with David after the transplant.
This is not to blame. Not at all. This is our culture, our intellectual heritage. These days, I bully Julia. Pouring math facts, math games, number puzzles, and more into her head. Being fiercely frustrated and angry when she cannot remember, cannot understand, cannot do the operations that I required her to do. I break them down, I repeat and repeat, and it does not stick. I am close to abusive in pushing her to learn.
David bullied himself. He did the physical rehabilitation after transplant with rock solid resolve. He went to that reading of his play two weeks after transplant. He was back at work, part time on paper, but really more, less than three months after the transplant. He wanted to resume life much too quickly. We did not know that resuming was not the option and we believed that anything less than resuming was for weaklings, under-achievers, ne're do wells. We had no idea. We had my stuttering and Julia's limitations as a hint, but we ignored both of those. I did not see the lesson at all. I was totally oblivious to it. Sitting here now, typing this, I am stunned by our stupidity. I don't mean that there were medical professionals out there who were giving us some information about life changing and we were ignoring it. They were are ignorant as we were. They applauded David's "getting back on the horse."
And here I sit, typing, with this lesson. Have I learned it? I can say that I see it. It was so far from my conscious mind at the time of the transplant that I can't even imagine that if I had only talked to David about it . . . we knew nothing. We were so set on our path to recovery and normalcy. I want to write, if only . . ., I wish someone had said . . ., If only we could have read . . ., but I am not sure it would have done any good at all if the idea, the thought, the realization was not already somewhere inside of us. And it was not. As Julia does not have a neuro-typical brain, David did not have a biological-typical body. As Julia cannot learn like other kids, David could not live like other people. We made a choice between typical life and death. I see now that it was an absurd choice but in so many ways, it was the only one that we chose, that was presented to us, that we steadfastly believed in. It is because I believed, and I can really only speak for me even though I use "we" over and over again. I guess it about David. I can only know it about myself. It is because I believed that life has only one path.
Oh, this sounds much too simple. Much too direct. Much too distilled. How could I be so foolish to believe that life has one path? Yet, there it is.
Julia is not on that path. And I am STILL not comfortable with that. I STILL do not embrace her difference as her. She is not her differences but she is herself living differently from typical children. She may intersect with typical children in some ways but she must be developed, be helped to develop in that unique way that is herself.
When asked about Cheshire's upbringing, I say that the best that we could do was to stand out of her way, provide her with what she needed and allow her to grow. It was not that simple but I do believe that it is, in essence, what we did. For Julia, I do not follow any part of that advice. I do, I interceed, I teach, I push, I punish, I do anything and everything in an attempt to develop her the way that I perceive is a close to normal as possible. I need to follow my own advice, my own parenting method. Not the same way, of course, but in the unique way that would benefit Julia.
And I think that when I resolved right after David's death to live deliberately, it was the closest I had come up to that point of understanding all of this. I did not even know what I meant when I said it. I still don't know exactly.
My head is crowded with ideas that I cannot write. My head aches in sadness of realizing this now. My eyes cloud over. It is astonishing to make discoveries, to grow just a little bit, but it hurts so much as well.
27 December 2011
26 December 2011
Dishes are washed; platters and cookie sheets are put away. The load of table clothes and napkins is folded and back into a drawer in the kitchen. The insulated shades in the two bedrooms not normally used are down. Julia has had three therapists in the house today and is quietly playing and chatting about Peter Pan, her playmobile horse barn, and the chocolate gelt that she is munching on. I have an almost irresistible urge to put Christmas away -- take down the tree, put away lights and candles, and get the house back to the new normal of a renovation that is 95% finished.
But I won’t take Christmas down quite yet.
Julia loves the tree and the window lights. And after all, the tree has just be up for a 5 days and decorated for only three. I can leave it all be for at least another week. New Years might be a good day for it, but I have at least two reasons for putting it all away.
The first is no surprise. First Christmas with all my stuff -- home, with Cheshire home, with those boxes of Christmas decorations and bits of memories oozing out from every corner. So many Christmases past. David was not a good gift giver. I had been spoiled before I met him by a young man who gave me wondrous presents that were necessities that I had no idea that I needed. They were beautiful and many of them handmade, and ever so thoughtful. David could buy from lists or suggestions, but when he ventured beyond that, his choices usually fell short. Of course, he would probably say the same about me. Both of us returned many, many presents and congratulated each other when either of us was really happy with a single gifts. The gifts that worked the best were those with healthy doses of nostalgia built in: Baci from our days in Italy, favorite old movies, travel books, and for me from David, little pieces of jewelry, stuff of every day wear. This year on Christmas, as we were emptying our stockings, the stockings that I made the year the Cheshire was born and quite conveniently had made 4 -- just in case, I found a little chocolate reindeer in the very bottom. We all were trying to guess what it really was because it was not clear from looking at it until you found the drawn antlers. I was surprised the Cheshire didn’t know what it was assuming that she bought it, commenting to myself that it was strange that she put one in my stocking and not in Julia’s and did not get a piece for Linde. But of course, Cheshire didn’t put it in. We were not home for last year and so, the diminutive reindeer must be two years old. Sitting in my put away stocking since Christmas 2009. Like the Valentine Day’s card that popped out from no where last winter, this is a David gift, neatly concealed, awaiting discovery. A wish from that other life we led, a sigh that travelled through time and circumstance to be my surprise, a sweet message that I/he/we can still think of each other. There will not be many more of these surprises, any more of these surprises. But I said thank you. Even if it is the last.
Our busyness over the week before Christmas kept my mind where it needed to be. Here. Present. Living each day. Talking endlessly to Cheshire and Linde. Shopping. Baking. Cooking. Doctor visits. Therapies. Making my daily lists and checking off the tasks accomplished. Every so often I would be quiet or alone and I could feel myself sinking, feel myself being swept into the sadness. The well was not as deep this year, not as desperate. I did not claw with bare knuckles, I could hoist myself out with strong arms. I did not get lost. I did not let the noise of the present dim to engage the sad.
I write that the well is not as deep, but I am not sure if that is true or if I just don’t need to sink into despair. Is it will? Is it healing? The sadness and missing is still there to be sure. Dropping Cheshire off at the airport yesterday at 4, I felt as alone as I ever could. There seemed no reason to do anything but disappear into nothingness. Having a Julia Dinosaur with a playmobile horse farm to put together is the stuff of tomorrows. Of joys. Of the new life.
I was not incredibly sad this past week. I was conscious that I wanted to do tasks that had the potential of becoming new traditions. I have a great need to begin anew and that was what I was doing. It was exhausting in part but I, and my girls, did it. And we will do it again next year and the year after.
But now that it is over, it would be nice to just be past it all and on with our regular life because there is that exhausting part. The cheeriness of the season does not wear well.
And then there is the feeling that Cheshire explained to me. Anticipation for this next bit of living. For Cheshire, it will be off to NYU and the beginning of her social work masters. Eighteen months of hard work. She is excited. She can’t stand waiting. I share the feeling about getting back to the work of lying fallow. The boxes and files need to be dragged back upstairs from the basement. The sorting needs to begin again. The unpacking and pile making needs to happen. The renovation of the house has truly given me a new lease on my surroundings. The colors, the shapes, the storage are so serene. I have created a good work place and a place with quiet beauty and calm. There are blank places to fill in. The dining room is especially empty after months of housing the make shift kitchen but that will come. It will be full again soon enough with the papers and boxes and files. I have someplace to comfortably sort now. I am ready to take up the work that I put aside when the kitchen work started and I am ready to go further.
I finished putting the blog entries into word processing files. I believe it is time to move on to a project with all these words as well. I hesitate to start. I have no idea where to begin. The deep water beckons.
On Christmas, during a brunch of lox and bagels and grapefruit salad and apple oatmeal, I announced my intention to begin a memoir. I announced it to those present, most of whom knew my intention, but I announced it to make it so. To mark the beginning of the work of it. Even though I have no idea of where to begin. It is my greatest resolution for the new year.
And my other resolution, one with less import, but still needing energy and resolve. I will go on a date in 2012. Don’t laugh! Really. I want a partner some day. Not soon. Someday. But I need some social practice and a date would be a very good idea.
So much for Christmas.
25 December 2011
24 December 2011
Something is wrong with my notebook. Ach! It has been strangely slow for a few days. Weeks? Possibly. For the past two days, it has been fading to white at times. This morning it took a very long time to get into working mode. Not good. And not convenient. No chance of going to the apple store today.
Christmas Eve list with comments (possibly, if the computer holds out):
decorate tree -- Yes, we’ve waited a long time. Longer than ever before. We bought the tree two nights ago. Finding a parking lot with a long Latino man in a temporary shelter on Thursday night after Julia’s last therapy session for four days. We -- she and I -- are alone, alone with Cheshire and Linde and tomorrow Mary and Robert. I appreciate our team of teachers and therapists. They are how Julia and I have grown and learned to be a family, but I am feeling like a bird let out of a cage. I covet the freedom, especially at home, of some exclusive family time. And the tree, we found easily. The right size and shape. A decent price although I could have bargained with the seller. I could have paid less, but, in a less than truly capitalistic move, I just paid what he asked. I mean, he was standing there in the cold. There was no one else shopping for the few dozen trees he had left, and I bet, that most folks shopping for a tree so late, bargain down the price. I would be in tears if people did that to me on such a cold night. I did not have the heart for it. Let the few extra dollars buy his Christmas gifts.
wrap presents -- I’ve always wrapped all the presents. David used to complain, jokingly, at least I think so, that I could not wrap my own. I do such a nice job. But this year, I feel the aloneness of it. I don’t want to cloister myself in my room with paper and ribbon and tape.
family service at church -- The first of four Christmas services. I would love to go the more musical service, but that will have to be for another year. The last time, I was to the family services was in 2009. That year, David’s last, Julia was more willing to sit through the service. She did have crayons and coloring books. It was notable only for the fact that when I noticed there were not enough volunteers giving out cookies, I jumped in to help without a thought that I should ask someone first. A taking on of community that makes me smile now.
make lentil stew -- for supper tonight. Our chosen dish. Comfort food, I think. With crusty french bread
make oatmeal apples for tomorrow -- Our Christmas brunch menu: Lox and bagels, grapefruit salad, oatmeal apples, and a platter of our baked goods.
wrap poppy seed rolls for travel -- The baking started with Cheshire wanting to bring some of our traditional baking to Chris’ family when she returns on Christmas day. It is interesting to me that usually I bake for days and days and then feel a bit of remorse letting go everything. David always wanted to keep some of my outtput for ourselves. Freezing cookies and poppyseed cake. This year, I feel so differently. I have very little attachment to any of the work I did with the girls. If by tomorrow evening, there was a few biscotti and a single piece of poppyseed cake left in the house, it would be fine. It was/ is so much the process, the work that we did together that was the real joy. And I almost don’t believe that I said that. Okay, it is not about all of my life, just about a few days of baking, but maybe I am learning from this time.
puzzle -- Cheshire wanted to buy a puzzle yesterday for us to work on during the day. And so, we will. What sweet time.
Other things to write about:
A snuggly Julia. We are back to sleeping on less than half the bed. Julia used to sleep like this when there were three of us in this big king sized bed. Sometimes with me, sometimes David, The person she was crowding slept on less than a third of the bed. Way less. It was always uncomfortable but the last few days it has been like the return of some kind of normal. Funny how normal can be uncomfortable and yet very comforting.
She is brighter. She is more aware. Yes, her attention is harder to catch when she is involved in something, but teasing that thread from the one that marks her presentness with me and I see a difference.
Please, please, I have missed this part of this child. Only on the return of her brightness do I realize how different she has been. The rashes on her body do seem like only the physical manifestation of what is inside.
Yesterday, one of Julia’s aids was telling me how Julia worked so hard to pronounce a word she was having difficulty with -- prairie. When Julia is interested, she is very persistent, especially about words. She was like that from her earliest days with me, and that interest and perseverance continues. Shannon said, “She is such a bright little girl.” People used to say that -- well, not people, Julia’s Kindergarten teacher, Christy, used to say that. She saw something before most others did. Hearing Shannon say it, I realized how few people have said it. Is this the brightness that I see returning? I don’t mean to say that I am in mourning that Julia is not smart or school-able, but rather that . . . . well, maybe . . . there is so much healing, so much growing, so much understanding that this child has had to take on. I am moved to write, so much darkness. When I realized the changes that I’ve been through since she has been home -- so many deaths -- and she has lived through them too. She has lived through me living through my changes. Add that to her own experiences and it would not be surprising to find her bright light buried beneath a dark basket. How could she believe that it could be safe for a little bright soul to sing out in her world?
And Julia is singing in school. She skips more often.
21 December 2011
I could just curse the . . . what? Who? I have no idea. But I hate falling asleep when I put Julia to bed, missing a late night talking with Cheshire and Linde, and then waking up after 2 and not being able to get back to sleep quickly. Such a schedule just means that it will be repeated tomorrow! Drat! I would rather be burning the candle at both ends but that has never worked well for me. Certainly, late middle age is not the time to embrace candle burning.
Having Cheshire home is always such a joy, and it is now. Rushing about, taking on much too much this week, pausing to be together doing something silly, and squeezing in another shopping trip or cooking time. Cheshire went to Milwaukee to pick up Linde who will also be with us until Christmas. The house, the home expands. We have not all been together under this roof since David died. I miss Lisa’s presence. I so look forward to some time with Mary and Robert. Amy will come by tomorrow to take pictures -- holiday cards will be for Chinese New Years. Breath in, breath out.
I am rambling. I will do more.
Last night, the first night of Hanukkah, we sat down to latkes, and with no intention to offend, pork chops and apples. We lit the candles, explained the candles we lit to Julia. We said the blessing and ate and talked and rushed Julia off to bed late.
I am feeling a bit too rushed once again taking a bigger bite than is comfortable to chew. Needing to let go of expectations of my perceived perfection and just experience the perfection that is in front of me. Whoa, yes, the old hippie talking -- but . . . I thought to do a “little” baking this week with Cheshire. She expressed a desire to bake some of what I’ve always done for Christmas, and then she wanted to bring some back to New York for Chris’ family, and then I wanted to bake a “little” for teacher and therapist gifts. This is the baking I usually do two weeks before Christmas and could not do this year because of the kitchen work. And then, suddenly, quite out of my control, the “little” baking turned into a big deal that has deadlines. And tonight, at 3:50 in the morning, I am worried about it. This is when the old hippie perspective needs to kick in. And it has not yet.
I don’t want to feel rushed. Of course, I don’t want to be bored with nothing to do either. I have a list inside my head of what needs to be accomplished this week, before the weekend, and without forgetting the round of appointments, therapists, and docs. Why is moderation such a challenge? Always!
Another project -- Cheshire and I have been searching for a kitten. We’ve visited two of the Human Society sites and yesterday, we went to a woman’s house to see her kitten. None so far seem right. Cheshire wanted us to find one this week for her to play with while she is home. I can’t blame her and I wanted to make it happen. There is one more kitten to see but that owner has been slow getting back to make final arrangements to see the kitten and they are 45 minute away from us. I don’t know if it is going to happen. DidiChi was so easy to find. Strange, how easy that way, and how difficult it feels like it is now. Still, I have to find the patience to find the right animal for our household. No pleasing, no rushing. Again, that middle path.
Julia is happy to have Cheshire home. She babbles on, interrupting everyone at the dinner table, saying that she is happy to be talking to her mother and her sister and. . . and she pauses, trying to define her relationship with Linde. I said, friend, when she was looking for a word, but really needed to say family. Mother, sister, cousin, aunt -- these are all so easy to say. Such easy definitions of relationships. Such easy expressions of emotions. Friend doesn’t sound as close, as intimate. But it is. I wonder about teaching her, giving her the language to describe the important people in our lives. Do we spend Thanksgiving with friends or family? Will we gather for Christmas with family? Where is the line? The lovely blur of crossing over to be someone who will always be important.
And we still have a Christmas tree to buy and decorate and wrapping and a Christmas brunch to plan. This is why I am awake. And I can laugh at myself.
Between and amidst all the running and taking big bites out of life, we talk. Cheshire is so excited about starting social work school in January. It is good to hear her excitement. It will be challenging doing a full time expedited program and scrambling for a bit of work to keep the expenses from getting overwhelming. As I worked in restaurants to support my NYC days, as David word processed, Cheshire will be babysitting. Something that she has always done so well. Something that done well is in demand. Who knew how well that safe sitter class in middle school would pay off?
We’ve talked a little bit about our sadness. David comes up often when we talk, not always sad, but both of us have a regret that David has missed something good that has come since his death. I feel, as I’ve written before, that I am becoming a somewhat better person -- more responsible, more aggressively taking on forward movement in my life. Cheshire feels that she is happier now, has found some direction, is taking her life seriously. I know that someone might say that David is present and knows what we are doing, looking down from his heavenly perch or living in our hearts. Blah, blah, blah. Sure maybe true, maybe not. But he is not here to enjoy, to experience our “improvements,” our better than we were times. Maybe everyone who has lost a dear one feels this way, says these things. Maybe it is only novel when it is personal.
In my ramblings with Cheshire, I touch upon all of my own issues and find that I have no conclusions. I did not plan to have conclusions midways through this fallow year -- of course, early conclusions would be welcomed and one of my goals is to not demand conclusions or jump to them during the process. But still, this road in front of me is still pretty much mired in fog and mist. I don’t know what the work that I will do is. I know that in the next month I will begin in earnest to take up a writing project. I know that writing, even if I could make some paying work from it, is not enough, not sufficient to please my yearning for soul’s work. I want to travel again, taking a long time, a month at least to be somewhere but don’t know whether this summer is the time for that. And then, where? Italy or England for fun and adventure and visiting. I would love that. I know that I cannot take Julia back to China yet, but the idea of Bolivia to do some orphanage work for a month really stirs my heart. But what of a week at Chatauqua with Lisa, what of our China reunion? I have no idea. And the final question, or at least it seems to be what is on my mind over and over -- whether to expand my family in some way. Ask China again for another daughter? Look into foster care, foster to adopt domestically? Cheshire asks, can Julia share you? And I don’t know. Sometimes, I glimpse a future with two children at home. Sometimes, I don’t see that. As we talk, I check the pulse of my feelings -- what is feeling correct? What is feeling like a right path? Still so much pondering and I lose patience with myself only to catch myself up once again remembering that this is what this year is supposed to be. Trusting in some process is also very hard.
20 December 2011
18 December 2011
What a day. Yesterday.
We had it to ourselves. The morning therapist calling in sick. I had planned to use therapy time to get a lot of house sorting, house cleaning accomplished. Then, no therapist and a small flood in the basement and there was little sorting or cleaning accomplished. And no matter.
We had snow to shovel -- a small bit, but Julia put on snow pants and her heaviest mittens to come out and help. She worked the entire time that I was outside and then rather cheerfully walked the dog with me. Julia still wants plenty of time to herself to draw and color but she is less unwilling to be with me for chores and less unwilling to be outside. This is an engagement that I have not experienced with her before.
Perhaps these months, since the beginning of October when I first started taking away any and all independence from her to try to control the scratching/picking, have paid a small dividend. I give her very little alone time at home -- not even in the bathroom, not even to fall asleep. I probably had given her way too much alone time since David died, needing my own alone time, and not being as emotionally available to her lest she take the full brunt of my grieving. Since October, I have done the complete turn about. Could it be that she needed that full mother care -- the bathing, the close inspection of her body and caring for every inch of it, the taking over of her physical life in the way that a mother is in charge of an infant. Because Julia came to me at 5, I gave her a measure of respect, a distance. Certainly, not a great distance, but I did not know every inch of her body as I would have had she been an infant. Now, I do. She is taking back some of her autonomy and wants to take back more, but I think she may also be used to my mothering, my responsibility for her every move. She tolerates my invasion of her world better than ever before.
And so, we shoveled, went back inside for sorting and cleaning and doing a bit of math.
We had errands for the early afternoon, that left me singing! Those ended at Panera for a late lunch before our winter solstice service at church. I took on the full joy of being a Unitarian. Winter Solstice! Lighting candles to resolve to heal our broken world and to invite the light back into our days. A telling of the story of La Befana, which David and I first heard when we spent our months in Italy, and Julia’s attention for parts of the service. I make her stand and read the candle lighting reading which is done by the entire congregation in unison, and to sing some of the hymns. We sang Deck the Halls, the first Christmas carroll of the season. Julia is able to read the words and although her singing is plainly awful, it is glorious. This time has taught me how important it is to revisit every instant that she withdraws and to decide over and over when it is the time to insist that she is present.
We went home to slabs of cake and cocoa and a fire and candles and Hook, the movie. She colored at times, we cuddled at times. And she went to bed, late but happy, I think. Lizzy, Lukie, Sally, and Mario keeping watch over us.
And in a few hours we pick Cheshire up at the airport. And Christmas begins! Bring on the light!
17 December 2011
16 December 2011
There is a short story burning inside of me. I've had a vague outline rumbling around in my imagination for a few months. Yesterday, I felt some beginning coming. I burn with it right now but I must make the time to write a first draft to see if there is any worth in doing more. I know that if I let this burning time pass, that it will get lost, the passion will be gone. Like a crush on that cute boy in tenth grade, except that I went to an all girls school.
Julia is watching me type. She wants to know what I am writing about. When I tell her that it is about a story that I want to write. She asks what the story is about. When I tell her people, she asks if someone dies in the story. “You know, people die,” she comments as if she is giving me literary advice. I don’t pursue the topic. She needs to finish her waffles so that her belly is full before the school bus appears.
I told Julia that I might be getting a new phone like Ellen’s. Ellen has an iphone. “Then get Angry Birds.” “What about that cool conversation app that you worked on with Linda?” “Sure. But I like Angry Birds better.” How many times has she played, has she even seen Angry Birds?
The intensity of the late fall is beginning to wane. We are not free of scabs and itching, but Julia has stayed in school for entire days this week, and this morning there is no bandage on Julia's right lower leg. There are still a few bandaids on scabs that are now just red bumps but the skin which was hurt by the topical steroid cream is healing and it is time for some air. Julia is unsure that she can be trusted not to scratch on that part of her leg and I put a few extra bandaids where she is concerned might itch during the day. The awareness that something might itch and needs to be protected is new. Responsibility for taking care of her body is shifting to her. Which is what I’ve been working on. Which is what needs to happen.
Shifting on a number of fronts. I can see it coming. I think. I want it so bad I can . . . well, you know. It tastes very sweet. But no counting chicks or even t-rexes until they are out of their shells.
Lizzy, the stuffed T-rex from Disney World, and her sisters, Lukie and Sally, seem to have acquired two brothers. They are Evan and Aevan. They don’t live with us. And Julia has begun to speak about the birth parents of these dinosaurs. Lizzy misses her birth mother. The boys fight. Working on a new work book in attachment/trauma therapy, Julia draws pictures of herself feeling sad, angry, and scared. The sad and scared pictures have to do with her birth mother. The words and conversations seem to have suddenly appeared. And we so need to talk about this.
And then my feelings. Two passions seized me yesterday. Two signs that the intensity of the past months is waning and I am getting back to my wants in this life. I want to add a being to my household. I put it this way because I find myself once again considering a kitten and once again looking at waiting children in China. Then I wonder China? Maybe somewhere else? Maybe foster care.
Yes, the hill from musing about a kitten to doing foster care is rather a steep climb. But I am musing, not planning. I did ask to see a child’s file. A child from China who is with an agency. Her family had just found her, so no file for me. The agency noted that with a 10 year old, I would be restricted (by them, not China) to a child younger than 10 to preserve family order. I would not fight them on this; however, I also would not use them. If I adopted again, I want to be open to kids up to 12 or so. There will be no family order here no matter what the age of the child. That is, unless I adopted someone about 4 which is not in my thoughts at all. Any child over 6 will probably assume the older sister/brother role to Julia after they are home for a short while, and so what does it matter if that role is played by someone who is 8 or someone who is 12. In fact, it might be less confusing for the new child, if they are older than Julia is and would naturally fit in an the older sister/brother.
Of course, I contemplate single parenthood. I wish that my children had their father. But that is not our reality now. I think that I am keeping David spirit alive in Julia, but his impact in her life will fade, is fading. If a new child was brought into the mix, David would have never been his/her father. It is what is.
My other returning lust is to wander. Travel again. I don’t know if we will have the means this year. I don’t know whether it is the right time but I want my feet on foreign soil, my soul in foreign air. My first thought is China but that is still not possible for Julia. If I adopted again, I would bring her without question, because even if it was hard for her, it would be worth welcoming a sister that way. But for just travel, I can wait until she is more ready. Then, I think of Italy. Where David always wanted to return. Where I left a chunk of soul. A month in Italy. That would be pleasure travel to be sure.
But then, I think of Bolivia. Bolivia where I could possibly do some work. Work at an orphanage for a month. Do something that might point me in some direction. A piece of my heart lies there as well. And I could see how Julia would do in the kind of work that I would like to make a part of our lives.
No answers today. Just ideas. Vague and unformed. Wild and maybe impossible. Throwing it all to the universe to see what comes back to me. A sure sign that I am finding the path again.
Posted by the Dalai Lama on facebook today: The first beneficiary of compassion is always oneself. When compassion, or warmheartedness, arises in us and our focus shifts away from our own narrow self-interest, it is as if we open an inner door. It reduces fear, boosts confidence and brings us inner strength. By reducing distrust, it opens us to others and brings us a sense of connection to others, and sense of purpose and meaning in life.
15 December 2011
Last night I went out to dinner with the religious education committee that I joined this fall. This is the first time that I have socialized with the members of a committee that I work with. I had the vague idea to do such a think when I was PTO president but my circumstances with David were such that it was impossible. Last night, I went to dinner at a restaurant where I celebrated my birthday with David and Mary and Robert a few years ago -- was a a life time ago? Was it two birthdays ago? -- and had a lovely time. It was dinner with six women, one of whom has a four month old baby at home. We had a glass of wine -- not the new mom -- and talked about nursing, birthing, schools, kids who don’t eat, sleeping and the lack of doing so. Yes, parent talk. Probably what women have always talked about. It was unselfconscious. It reminded me strongly of other times. Times discovering how lovely talking to women could be. It is not that I don’t do that now, but I don’t do it enough over a glass of wine and dinner. I do it on the fly if and when I do it at all.
It was not easy getting out to go to dinner. Julia had OT and speech therapy appointments after school -- the amazing stuff we did there will be discussed next! -- and there was Madison traffic coming home -- something I rarely see as i almost never travel during out brief beginning and end of work day travel surge -- and then there was a quick bath, bandaging and bandaiding and then dinner to prepare before the sitter came. Of course, the sitter had to be one of Julia’s therapists who has no trouble with the long list of Julia’s operating procedures -- to say that I am splendidly blessed by the young women who guide Julia through therapy each and every day is so much less than the experience of having them in our lives. All was done and ready by the time Bethany made it to our house and I was out the door so meet my supper companions by 6:20.
And Julia ate her supper, play with Bethany, and got through the remainder of the evening ritual before bedtime and was asleep before I made it back in the house by 8:30.
And it was delightful. It is not that David fulfilled all of my needs for friends and acquaintances. He was not everything to me all the time, but he did provide a solid partner. With his companionship, I could still miss a good talk with my girlfriends, or a good talk about some topic that did not interest him at all. But I could, when necessary, survive on little else but his companionship and be satisfied. Without him, my loneliness is my constant, broken at times with conversations that splash into the bottom pit that is my neediness. Marcia’s check in phone calls, Lisa’s texts, Amy’s walks, tea with Mary, a short conversation with a therapist, the morning’s walk around the block with the dog and parents who see their kids off on our school bus, email from my Findhorn friends, a visit with Cheshire, even a friendly interchange at a shop -- this is what feeds me but it is a starvation diet. Not that I am not grateful for each and every interchange. They are keeping me alive. They connect me with what is outside of me and feed my optimism that I will either learn to be satisfied with this level of companionship or that I am still capable of companionship on some level and will someday have all that i crave. I don’t want the level of companionship that I live with now to be what I have for the rest of my life and I will do what I can to have what I want. But in the changing what can be changed and accepting what can’t, I see that this may fall into the later category.
And I wonder if I have had all the joy that has been allotted to this life for me. This is not a poor me, self indulgent with heaps of self pity statement, just a wondering. Some people have much less joy that I have experienced and there are still so many things that make me happy and willing to pick up my tasks for another day.
I have been wondering about apps. Iphone, ipad apps. Not too long ago, I read an article about apps for autistic kids and followed some links to a confusing array of possibilities. It was overwhelming and I was sure it was not going to be an easy jungle to make my way through. I put the idea aside but definitely sent the request to the universe for some help. And it arrived today. The help, that is, in the form of Julia’s speech therapist who showed us a conversation app that she is beginning to use in therapy. I have been on the fence about buying an iphone, which I want but have not been able to fully justify. I’ve never spent money on a new phone. I have always picked one of the “free” phones offered by whatever carrier I have used. But I have had a hankering, a wanting a new toy wanting, for an iphone. After watching Julia interact with this conversation app, I am ready to buy an iphone tomorrow!
The program shows a picture, of a child holding a snail, for example. And asks the player to choose among three things that might be appropriate to begin a conversation with this child. One choice is a statement similar to what Julia would usually say. In this snail conversation, the statement was “Your hands are dirty.” A choice that would not encourage interchange but that is generally on topic. There are also two questions and the “right” answer, in this case was “What are you holding?” Clearly, none of the three possibilities are wrong, per se, but there is always one that is best for starting or continuing conversation. Most of us gravitate to the best conversation starter, missing now and again, but managing to make out way through conversations all the time. It is how we survive as social animals and we do it naturally. How incredible this is! But a kid like Julia, kids on the autism spectrum, don’t get it. They don’t naturally learn conversation. They blurt out observations or facts that are interesting to them, trying and failing to interest other people. It is miserable as a parent to watch these misshapened attempts at connections. And so, Julia listens to social stories, she and her therapist and I work on scripts, but conversations rarely follow scripts. It is so much improvisation and kids with autism are so woefully bad at improvisation.
This program that she used yesterday gives the three possible things to say, provides reasons for why one is the best, allows the child to record the best statement, and after a few interchanges, provides an entire conversation that can be played back. A complete and appropriate conversation that the child has helped to put together. In the child’s own voice. And I teared up to hear two simple and appropriate interchanges with Julia’s voice as one of the speakers. And she was fascinated. I believe that she can learn how to have a conversation which is a step to learning how to have a friend. But I also know that we have not yet found the tools that she can use for the learning. Maybe now we have. Yes, it is still all about improvisation, and she is still not good at that, but I see her generalizing all the time in her reading now. If she can generalize with reading, there is a decent chance that she can do it to learn to make friend as well. And she does so want friends.
13 December 2011
12 December 2011
Every so often I check who is following the blog. The other day a blogger named Wrathnar the Unreasonable joined. Umm, did you know Julia in a past life? Wrathnar has joined a number of interesting and incredibly diverse websites. I await a comment.
And comments, Sharyn, yes, would that I could have read what I write now five years ago. I am pleased with my deliberateness in writing it all down. Well, some of it down. I’ve collect almost all of my blog entries in monthly files and I will begin sifting through them with the idea of putting them together somehow. I can’t say much more than that about the process. It will have its own way.
Notes on Concerta: Julia is now taking 36 mgs. which is a lower dose than she was on with Adderall even though the mgs are higher. At home, she is not rubbing her fingers together as much. She is telling me about how much parts of her body itches. I am hoping this is the self-awareness that we’ve worked so hard to develop. I just wrote a note to her teacher, saying the I really wanted Julia to succeed today at staying in school. Do I want them to cheat? No, but she need to succeed a bit. She has some very itchy places that are healing. What I would give for healing without so much challenge.
Why is healing so hard?
Yeah, ok. I get it.
Julia has stones in her pockets today. A pink stone called rhodochrosite. I found this on its healing power : Solid to clear pink. Gentle, yet probably the most vibrant loving stone to heal the heart chakra, especially for giving/receiving love. Also for loneliness, loss, heartache, fear, insecurities, inner-child issues, abuse, and incest. Helps self-forgiveness and trust issues, spiritual and self love, desire to live, purpose. Best worn 24 hrs a day. Electro magnetic. Stronger than Rose Quartz. Solar plexus, stomach (anxiety), food addictions, anorexia, asthma, eyesight (especially emotional not-seeing, to avoid pain). Thymus. Open the hand healing chakras. Specialized uses to detox / heal blood, liver and cancer. And a green stone called Chrysoprase. Chrysoprase is used to speed the healing of any wound. Carry a Chrysoprase in a pocket to help heal. Also keep a Chrysoprase close to your bed at night to speed healing. Chrysoprase helps to make conscious what was unconscious. It strengthens the workings of insight and the higher consciousness, encourages hope and joy, helps clarify problems, and has been used as a cure for restlessness.
Does this sound a bit crazy? But I have had friends who have used stones and gems for years. How often did I make fun a crystal collection? And yet, I have collected, without really thinking about it, stones from favorite places, some near, some far. Stones that live in my bedroom in a little pile or reside by my front door in a nook that was built for a phone connection and now has shells and stones. I have collected, placed, and lived with these stones instinctively, consistently. As if I did it intentionally. As if they were part of my private rituals. And if anyone would have asked me about them, although no one ever has, I would say that they were just stones, rocks, things I picked up walking in a field near Avebury or the dusty ground at Tiwanaku or in Prospect Park in Brooklyn. Is it any wonder then, that a move from unintentional collection to stuffing particular stones in Julia’s pockets is not too difficult for me? I feel a little crazy. I certainly am more than a bit desperate to engage heaven and earth to heal my child. Storming the heavens has taken on so much broader a meaning. Then again, what stones should I be carrying?
This weekend, Julia saw Happy Feet 2, bought a Buddha coloring book, and decorated for Christmas. She is also hatching a dinosaur egg in a glass of water. We added another 10 flash cards to her addition facts and she read a story in Highlights about Hanukah is space. Full days for us. And she tells me she dreams about cookies.
And thanks for asking about the kitchen, Sharyn. I had a vague grand plan to post pictures of the finished kitchen weeks ago, but as the end of the process has dragged on, I have been, in turn, at a loss for patience, not really seeing the progress, not wanting to document little gains, embarrassed that I just want transformation and not process. And a bit sad too. Sad that I am making this house more of what we wanted for just me. Me and Julia, of course, but me. Sad, that David will not get to use it. I allow myself a bit of that wallowing now and then.
Putting some things away, however, and still having Ed in my house numerous times during the week, I am noticing where adjustment need to be made. And that is very good. The dishwasher, reinstalled on Friday!!, door rubs just a bit on the cabinet next to it. The spice rack needs adjustment. The trash/recycle pull out cabinet does not close like the other drawers, and neither does the pull out cabinet for cans.
All this to say, that another round of in process pictures is warranted. I’ll let you know when they are posted.
I am sorting out in my head the difference between magical thinking and the learnings of life. It is not that the kitchen is taking so long past the final drop dead due date to teach me anything, but I can glean a few learnings from the process. Maybe everyone else knows this. Maybe I am just slow. But there it is. I am getting something. Four months of lying fallow for a bit of wisdom.
11 December 2011
"Rawr means I love you in dinosaur" I love it! Thank you, Bobbi Jo.
Saturday was busy. I started in earnest to move into the kitchen while Julia had a therapy morning. No, the kitchen is not complete which probably means no baking until after Cheshire comes home on the 18th. A small piece of countertop was not the correct size and it will be another week before it comes in. And there is still trim work and adjustment that is waiting. I have given up on an actual drop dead date and the only irritation comes from the fact that Ed will be in the house this next week and I’d like to do the cleaning and moving in on my own schedule, rather than work around his. I need the discipline of sharing for the week.
Today, I put away baking pans and serving trays, organized the pots into two drawers, washed the wine glasses from my mother’s estate pausing briefly to try to remember why she only had two tall champagne flutes and congratulating myself that I only lost once of the glasses (although how one broke and no more is a bit of a mystery). These will go in my glass-doored cabinet along with a few pretties. I expect that I will rearrange in time when I find out what I want close to what I am thinking of, but for now, I am sticking to a plan that I devised when I designed the kitchen. The order of putting away has more to do with what cabinets I can fill than anything else. It is random and not incredibly useful
I have six more kitchen boxes. Much of what needs coming in goes on the shelves which are nearly finished. They are up and strong but there is sanding of the fill and painting. Not big tasks but messy and needing them to be empty until it is finished. And I am longing like a whinny child to fill them up.
Julia has been in a happy mood all weekend. She did scratch some today when her newest therapist was with her. Still slowly, and a day of scratching sends number of sores back to the beginning. I explain over and over. Does she hear any of it? Does it matter? Those sores that begin to heal go through a lump/bump phase that is so perfect for scratching. I hope that we get some answers when we see the pediatric dermatologist. I wonder how much will be healed by the time our appointment on the 23rd comes but then, these sores take so long to heal. There will be something for a doc to look at.
Last week, Julia showed herself to be the same self as she who came home 5 years ago. I was bandaging and bandaiding after a shower, when Julia scratched a different part of her body than I was working on, so quickly did those hands fly and attack that I did not really see her do it. I asked to see the place and sure enough a almost healed bump was bleeding. But also, the areas around the bump was very red and two smaller bumps had been raised. I asked Julia to do what she did again so that I could see how hard her scratched. I did not really think that she had scratched hard. She refused to show me, I insisted. I was neither angry or upset, just inquisitive. I kept insisting, she refused. I told her that she should stand in the bathroom (where she was) until she showed me. I brushed my teeth, and asked. I put on moisturizer and asked. I went into the bedroom and checked on her every 15 minutes, expecting each time for her to give in. Finally, after standing for an hour, I went into her and talked to her until she showed me a little something, although not how she really scratched. I backed down at that point and put her to bed. Amazing how stubborn she can still be. How stubborn she always has been. That will of hers scared me that night. She used to be like that all the time. When she had no attachment to us. To me. What would she be like, unattached, without love, without devotion, if she was 14? 16? 20? Julia is not the same child who was so stubborn five years ago. She likes cuddling into my arms. She leans against me, casually, as if I belong to her. She looks to me for help, for guidance, for comfort, for care. And this looking to me is what she needs, even if it takes a long time to grow. And for the stubbornness, that too will help her, at the right time and in the right place.