Intensive therapy ended quietly yesterday.  Hillary did the last shift, following the current plan in an unremarkable way.  Julia attended and did not attend as usual and ended up with reward time.  Hillary wrote her notes and it was all over.  At noon.

Quiet.  Quiet, quiet.  Four, very transformative years ended.

And then, we began something new.

I made a list for the rest day:  work on remaking the play room, fold clean clothes, meditate, walk dog, food shop, swim or paint (neither of which happened), see Monsters U -- the movie, go to Amy’s house for food and music.  Julia played on the iPad in the car.  

At Amy’s house, I had a very good time.  Julia did not play with the kids assembled, she found Lego to assemble and play with.  She did eat with everyone and I dragged her into the living room just before we left to listen to music played.  She strummed a guitar in time but not in tune.    She enjoyed herself; I felt the pain of her difference and her inability to engage with the other kids who were making music videos the way that I would have been recording versions of Beatle’s songs with friends.  

The pain sucks and there will be more and more.  Intensive therapy has taught Julia so much and has also wrapped her in a safe world where her behavior has been normalized and she has constantly been engaged at her own level.  Now, we step into the larger world together.  I know she will not always be welcomed and she will not always welcome the welcome that she receives. 

My prayer is to take one day at a time joyfully.  I have to smile.  That is my prayer for myself as well as for Julia and for us together.  It is all the same.  It is time that we make out way out of the crysalis and learn to fly.

I posted a picture on FaceBook of Julia flying a kite -- something she did last weekend when we went to a birthday party at a park.  She worked so hard to figure it out -- it was a breezy but not windy day and it would have been a challenge for anyone trying to fly.  She persisted and she succeeded and I was very proud of her.  I posted pictures on the photo blog and also on Facebook with those feelings.  But as I've thought about it today and as friends have "liked" or commented about the picture, there was a deep sense of sadness that came over me.  Other parents post football or soccer wins, academic awards, dance recital pictures and graduation and first job news.  I cannot, and maybe never will for Julia.

And there I was, landing right in the midst of not-in-the-present thinking.  What am I worrying about?  My lack of bragging opportunities?  Exposing Julia's untypical development? My fears for Julia's future?  Some concern that our friends will not accept us as we are?  Looking over the list and even having a hard time coming up with the list, I perceive that it is amorphous worry.  Just living in the land of worry that circles around the stress and anxiety of raising a child with special needs.  And such worry serves absolutely no one or nothing.  Concern, planning, looking with a realistic eye is different from worry.  It will take years of serious practice for me to alter this gut reaction to worry.  But I see it, see is a little quicker than I have in the past.  Therein is progress.

I began Saturday in an foul mood.  Defeated, sad, ready to give something up.  And I wanted to go home, feeling like I had long outlived my welcome in Indiana.  I was of no interest, even to me.  Last week, after the lay trainer teaching a Milwaukee university doc who was attending, asked my partner and I various questions and we all chatted.  I told her of my ambitious plan of resiliency training, my partner of a plan that is simmering in her head.  The doc was polite to me but excited by my partner’s plan.  I felt awful -- her not me, only a limited number of opportunities to go round, maybe I am nuts.  Not articulated enough to be jealous, more like feeling that once again I was foolish to think I had a good idea.  I held on to these feelings, albeit buried beneath more immediate concerns, but festering below.  By Saturday I hungered for recognition and approval which I was not getting.  Not that I believe that I should have been getting it but wanting all the same.  Ego urging me on -- that little devil sitting on my shoulder nodding at my despair.  And that, and noticing Julia’s differences, put me in a bad place.

But by mid-3-year-old-birthday-party, I was feeling better.  I watched Julia play with kids in the dinosaur jumping house.  They were younger but by in large she was appropriate -- with some awkwardness -- and very friendly.   She bossed some kids around, but much gentler than she used to and a word from me would stop her.  She was kind to a girl close to her age, perhaps 10, who was either shy or sad.  And she ate like a truck driver!  First, a hot dog, vegies and chips, and then 2 pieces of cake and home made cookies.  She pointed out to me that it was a good cake. (when we did grocery shopping before getting home, she asked to buy a frozen frosted white cake and said she hoped it was as good at the one at the party.)  And I talked with a Noah relative who works in a homeless shelter.  She felt led to her work and encouraged me to do my own “important work.”  Was that all that I needed?  Some one listen and utter a few words of encouragement.  Small and something that she will never remember.  Was it the angels, my guides reminding me?  According to Ellen, they do it all the time.  I only need to be attentive.

I had a dream on Friday night. A dream of safety and happiness. I woke up wanting to hold on to the feeling. The holding on didn’t work on Saturday but as I was driving home I realized that this is the happiest dream I have had since David died.  So comforting, in fact, that I could summon up the feeling of it last night to lull me to sleep.

Today begins the rescheduled fourth grade camping trip to Upham Woods.  We packed last night and Julia was pretty excited about today.  She did get her period minutes before we were set to leave the house for school.  She handled it without drama or complaint, and told me that I was a very helpful mom for packing her extra napkins.  

I am working at Waisman this morning but plan on an afternoon in the garden.  I made a mental list as I rode in and almost want to cut short the work to get to it. 

Posted pictures in photo and flower.

Elliott wrote that “April is the cruelest month” and I sure hope so.  At least for the year.  It’s been pretty cruel so far and we’re only half way through.

A few days ago, I drove past the bay to avoid some Park Street traffic.  I have not be walking near the bay because of the cold (and it is still cold) and I am tired of the ice.  The first thing I noticed was the bobbing ducks, then the lack of ice, then the almost white capped waves.  Even a short glance at those ducks promised to make me seasick, the waves pretty fierce and those ducks all bobbing furiously.  I felt the coming of spring -- still coming, not here and the resiliency of those ducks who could endure the freezing water and the motion of the bay.  I struggle with what those ducks do with little perceived effort.

Mid-April and the reason to write here are piling up.  The will, for some reason, diminishes with each day that passes.  And writing, as soon as I put fingers to the keyboard or pen to paper, is a primary practice for me.  I question how I can ignore such basic knowledge and is deep within me.  Of course, I also know deep in my soul that I should exercise regularly and eat wisely.  

I have the capacity to ignore much of the wisdom stored in my soul. 

Yesterday, I went to the last of 5 meditation classes, “Buddhism in context.” 

After five weeks I have some understanding of dukkha -- suffering -- and that all life has it although it still seems to me that I have more than my share.  I have some understanding of second arrows -- the suffering we add to the actual suffering of life, sometimes called regret or guilt.  Finally, I have listened to the lists and lists to help one who practices meditation -- some of which I can understand, some are too much to hold in my head during the teaching let alone when I am “on the cushion” -- kinda’ cool expression for sitting and meditating. As it was a first class, so much of the teaching have rinsed through me.  I have caught small bits and pieces and for the most part I remain the unlearned student.  There was advice given yesterday: Let the teachings come to you.  I have no choice.  

It has been a revelation and a “duh” that  I’ve finally grasped a bit of the importance of meditating in community.  I ran to church and became a much more involved Unitarian after David died.  Sometimes feeling that there was no way that I was going to fit in but insisting on finding community in the place that insisted on preaching community.  And I have found some community at church but still did not grasp the benefit of spiritual practice in community.  But getting some of it through our Quest activities and now this class under my belt, I feel benefit beyond a simple community.  I am not articulate about this yet, but it is palpable. 

On Tuesday, I begin my eight week Meditation Based Stressed Reduction class at UW.  I signed up for this course as a way to gain credibility in the research world, but now it is much more.  I do want to learn more about contemplative practice for its own sake, for my sake.  I am very happy to have started with a buddhist base, not that I am looking for a new religion but I know that the MBSR course washes away the spirituality of meditation so that it can appeal to a broader audience of students.  I, however, like the spirituality and need the science.  I am excited to begin.

I am exhausted -- not always physically, although my nighttime sleep is regularly punctuated with time awake and so it is rare that I get a full night’s sleep.  It is an exhaustion of the soul and my second arrow is that I fear my life will never change and that I will spend the rest of living this life weary.  

Awhile back I was talking to someone about adult service for the disabled and the person casually said, “When you daughter applies for services . . . “  The words were a punch in the gut.  The person had no intention of hurting me, and truly there was no reason not to use Julia as an example during that conversation, but suggesting that Julia will need adult services for the disabled when she is an adult hurt badly.  It may sound crazy but I hold onto a belief that she will be “normal,” “typical” or at least be able to support herself with employment and have friends, even a partner.  I did not know how invested I was in that belief.  Evidently greatly no matter how irrational that dream is.

Julia is still asleep beside me this morning -- Sunday is the only day we are in bed late.  She is the source of so much of the dukkha in my life.  Truth and sadness.  Last Monday, Julia peed in the car again. She peed because she would rather play with her iPad than mind her body.  She couldn’t wait to jump in the car when we were going to do errands, do food shopping and then go to speech therapy.  She did not go to the bathroom before we left because she wanted to go into the car and play with the iPad.  She never asked to go to the bathroom at the various stores we were in and just before speech, I had enough time to run into the food coop to pick up tofu.  Julia asked to wait in the car.  When I came back to the car she was still on the iPad and she had peed in the seat.  I had to stop at the rehab clinic and cancel speech, then home where the car needed to be cleaned out immediately and then go to the car wash for a bio wash that cost $139.00.

The peeing made me angry and the anger sat with me for an entire week.  Towards the end of the week, I saw clearly how much the anger had to do with the loss of control. I have been holding knowledge without acting on it -- that her tioleting habits have deteriorated badly and I’ve lived just hoping they would get better with time.  Nothing that Julia does gets better with time without much teaching and practice.  Julia needs to be reminded to pee and poop even when she is potty dancing.  And it isn’t just when she is immersed in compelling activities.  It is everything -- emptying the dishwasher or putting toys away.  And I am terrified that my life will be nothing nothing but taking care of her.  Forever.  Now with her period I have another another layer of responsibility.  “Change your pad, go to the bathroom.”  Remind, remind, remind.  More and more care for someone who can’t even carry on a decent conversation.  Forever.  Another second arrow because I do not know that this is true.  It is fear nothing else and the truth is that there is little I have control of.  Why let this unknown punctuate my days? 

Opening the blinds this morning, I spy the snow on the ground.  There were weather reports of a spring-like day today and the updated report is that it will be warm for a short time today, but the wintery mix of snow, sleet and rain will only turn to rain and not allow for any gardening.  Gardening is my own true practice.  I have not done it as a practice, as anything more than a struggle for three years.  I am hopeful for this year but the practice needs the spring and it is not here yet.   

The dear son of a dear friend is very sick.  It scares me.  I feel very far away and unable to do anything.  I try to hold my “what ifs” at bay, but they come crowding in all too often.    We have a history, this friend and I, and the history makes it hard to be optimistic.

I know that there are many things to be grateful for, still I whine:  I placed an amazon order for some birthday gifts for Cheshire.  I had a few missteps but when I finally got to the part that would allow me to write a greeting, I broke down in sobs.  The sadness of missing David, of our life together and as a family, of all of the small steps of raising Cheshire, of the joys of raising Cheshire, of knowing that this family life is irrevocably over jumps out at me.  33 months and it can still be so raw.  I know I am not through the tunnel of grief completely, but I did not know how close the tears can still be.

I awoke this morning with the idea the no one does what I want to do.  No one indulges me. I almost laughed at myself for such a thought.  It was so childlike and so utterly selfish.  Is that what having a partner means?  Indulgence?  Not that David, or any partner, does what the other wants all the time, but sometimes, I got or expected to get my way.  Crazy, selfish, considered or wise, David catered to my whims and wants sometimes.  And that was delightful.  The immediacy of a partner is a blessing and still, still, still, I miss it. 

And so, this is April so far.  I hear NPR stories about cherry blossoms in DC or dandelions’ first bloom, and it is as if those word are personal attacks.  I need spring.

Long doc appointment with Julia this morning.  Finally, an appointment with an orthopedic specialist.  After x-rays and physical exam.  Julia’s turn in when she walks is due to a twisted thigh bone and low muscle tone which is consistent with her PDD diagnosis.   We will do some physical therapy but there will probably not be much change.  Getting her involved with physical activity is the best thing for low muscle tone.  

I am too tired today to figure out what we will do.

Speech therapy today - testing her on W questions.  She did “better”, translated that as more appropriate than she did 2 years ago, but the progress is small and slow.  We will focus more on “when” which is most helpful because that gets to time, calendars, days, seasons, months, years, etc.  She needs memory to work on this.  Her memory is so selective.  Is this a “muscle” to be strengthened?

Being sick, I sleep between appointments, put some of the soup I made yesterday into a pot for our supper, and watch a movie with Julia before her therapist comes over.  Drinking water and tea.  Trying hard not to demand anything of myself.  Even thought.  This is a time when I could plunge into the depths of despair for no other reason but that I don’t feel like doing anything today.  

Listening to Pema Choldron lecturing on “The places that scare you.”  Feeling I could sink into some other place.  Wondering if that is only today, which it might be.  

Ok, enough!  I need a nap.

I go through this feeling every few months -- of having nothing to write about, of wondering what I am writing about, of trying to figure out whether I should have a theme in my writing, of feeling like I am writing the same thing over and over, of feeling like I only write about small, trivial things.  I have been surfing the web for various reasons and have come across more and more good blogs about parenting kids with special needs.  Most are personal stories, some professional.  Sometimes I want to be like them.  

Ok, right now, I want to be like them.  I think I was at some point when we were first discovering Julia.  Then, this was an adoption blog and I was hell bent on writing about my experience is in a painfully truthful way.  Then we moved, David got ill, David died and I discovered the grieving process.  All of that life happening threw me a bit off topic.  Maybe it expanded my topic or bent and shaped the topic in a way I never expected.  So, every so often I have to go through this minor tantrum of purpose to realize that just like my daughter, I am and must be exactly who I am.  I write what I can write about.  

And then, it is time to go on.

Julia’s birthday is coming up and she told me she wanted a party.  I was so excited when she said that!  She has endured a few parties that I've given her and wanted to bring a cake and candles to the therapy team meeting we had last year on her birthday so that we could celebrate, but I think this is the first time she has asked for a party.  Of course, this is the first year in a long time that I am in any way mentally prepared to give her a party. 

And then, of course, there are complications.  

Julia is not a kid who is invited to parties and does not have friends to make up a kids party.  If we lived in a community with family nearby, I would just have a family party, but as we don't.  So instead I sent out an email feeler to a bunch of friends, including Julia’s therapists and some grownup friends, who could celebrate with us.  Those with kids, I invited the whole family.   

Part of me hated doing that.  Be it special treatment or the possibility of pity or whatever other negative spin my over-active mind could put on it.  But that is me and my need to look “normal,” it is not what Julia needs.  Which is just to be who she is! By the end of the day, I had heard from everyone on the email list and although there may be some time conflicts, everyone wants to come.  I am still tearing up about that.  We have good, kind, wonderful friends!  And they love Julia.  And it breaks my heart that I have to have a different kind of party because of where she is right now with her social interactions, but those damned tulips are beautiful!  (You know that Journey to Holland story and what might be considered a response and also this one by the same mom.)

So, I righted myself again and will get into the party planning mood soon.  As I think of it, I am ready to throw a party.  I haven't tried for a long time.  I need to ask someone to help me host a bit -- after having a few folks over for dinner last year, I felt that I really fall down in the hosting department.  I am still half of a couple when I entertain.  And if that is the case, I just need to ask for help.

The house is as done as it is ever going to be (and even clean right now) and I am as normal of the brain as I can be at this time.  And my birthday is a week after Julia's and a party on the weekend between the two will be good for me as well.  And right now, I am thinking of it as a birthday/come out of mourning party.  That is what it feels like.

A friend who is also a Facebook friend shared this post from an 18 year old who has a long term health issue:  

“Well,I can honestly say my first and most likely LAST election as a legal adult has suck. I don't think I can explain how terrifying this is for me. I don't even care what anyone thinks of the fact that it has brought me to tears. When I say "Obama being president for another term will be the death of me" I mean it literally. When it come to Obama Care,people who have a major illness or a life long illness..such as myself,are pretty much not far from their death bed. Once it takes full affect he will be making those people with a major or life long illness comfortable until they pass because we are too expensive. SO YES,I have a reason to be upset and I have a reason to cry. I already had a time limit on my life and with the help of Obama care it's even shorter. Congrats on your win for a second term. Next time anyone wants to say "Obama cares about everyone" remember people like me,and how we pretty much have a time limit on our lives.”

This young woman was in my thoughts all day yesterday and I could not go without responding with the aim of providing her with some help that she desperately needs:

T has been on my mind since I read your post.  I hope that you will pass this along to her.  I am posting this privately because I don’t need to start another political debate.  It is time to heal.

I am deeply sorry that there is someone or more than one person who is giving her the wrong information about the Affordable Care Act.  As the parent of a child with special health care needs, I have examined the legislation carefully and have also spoken with advocates and lobbyists who specialize in working for the disability community.  With great respect, I feel a need to point out how T is wrong.  The Affordable Care Act will allow T’s parents to keep her on their health insurance until she is 26.  It will allow her parents and eventually T herself to move and/or change jobs and get insurance for her even though she has a serious preexisting condition.  I am assuming here that T is covered by private insurance.  There is no provision of the Act which demands that T or her parents change their health plan or that her health plan will need to change her benefits.

If she is covered by some sort of Medical Assistance and/or long term care assistance, the Affordable Care Act will improve her coverage.  There will be no “death panels” and treatment options will be no more limited than they are now.  At present, insurance policies, private and public, have caps on services and restrictions on treatments.  I don’t believe that the Act will change that, that is, expand caps or restrictions.  Experimental treatments will probably never be covered.

State medical assistance plans and advocacy groups vary widely from state to state, but I hope that T will find an expert, an advocate, or someone who understands benefits for people who are disabled and have a serious conversation with them.  I urge her not to depend on the rhetoric of the extreme conservatives who have dominated the conversation but to seek out moderate voices for information and help.

Here are a few websites and articles to get T stared:

http://specialneedsplanning.net/2012/07/what-obamacare-really-does-for-individuals-with-disabilities/

http://www.huffingtonpost.com/carla-lohr/health-care-law-disabled-people_b_1636159.html

http://www.care2.com/causes/kids-adults-disabilities-fear-less-scotus-aca.html

Also, if she looks on the National Disability Rights Network (http://www.napas.org) about half way down the page, under Latest News, there is a downloadable pamphlet/guild entitled “How does the Affordable Care Act affect people with disabilities?”  It is good reading, a bit dense but with lots of answers.

I’ve also given your comment about the passion of liberals a good amount of thought.  Why do I have a passion to extend the civil rights that we, as able, straight Americans take for granted to people who experience life differently than I do?  I guess because I can.  T’s desperation and fear is exactly what is wrong, of course in my opinion, with current conservative thought -- prey on the weak, scare them to death and fill them with fear and hate for people who are trying to solve problems.  That’s what Rush Limbaugh, Sarah Palin and Ann Coulter sound like to me.  

I know you are conservative and I’ve worked and played with conservatives, but it is the current crop of radical conservatives that keep me as far left of the conservative ideology as  I can get.  I hope the the most recent election causes an earthquake in the Republican party and that moderate Republicans take back their birthright.  Then, the discussions about solving problems can begin again.