Posted by: janetlandis | May 17, 2013

Love and Loss

Seeing that the last draft on this blog was in March astounds me.  Even worse, I’ve published nothing here since November of 2012.  I lost hope.  Even as I tried to grab at the tattered remnants of the gorgeous golden thread of it, my fingers slipped.  You could say it was a nervous breakdown.  Strong as my spirit can be, the last few years have been especially rough for all of us riding through the universe on our lovely mother, earth.  We are trying to cope with so many stressors at once, and our Great Mother, who supports us all has been getting sicker and sicker.  Species are disappearing, cruelty has been splashed across the news at every turn and if we love our fellow beings it seems cowardly to look away.  Day after day then, we watch the losses mount and hope that our species has enough intelligence to overcome our greed for things.  Each centimeter of wilderness that is lost costs our hearts and souls on some level.  Even as spring arrived, and the trees burst forth with blooms; even as we delighted in a family of fox that took up residence in a mound on our land, still the world seemed fallow.

My birth mother is suffering, and has been since the death of my father.  One accident or illness after another has beset her, and a frightened child took up residence within me.  It became to risky to call and hear the pain in her voice.  God bless my three sisters who would call every day, as I barely managed a weekly check-in.  Lucky enough to see her for mother’s day, I rode many hours in a car driven by a spiritual warrior to get there.  My sister, Anne, has maintained her writing throughout every crisis, every set-back, every let-down as she crusaded for the quality of each human life she offers her wisdom to, and forded the river of deep despair that seeing the gridlock in our nation’s capital has on all but the most powerful lobbies;  allowing our mother to be strafed of life, fracked/raped for the resources we can still violently drag from her depths.  Even through her fallow times, she has prevailed.  I respect her so deeply for that.

My sisters, brother and I are all trying to comprehend what life without our earthly parents will be like.  Each of us is trying to cope in our own way.  Today, rather than working against my self, I am attempting to open the vein of creativity again.  I am putting my faith in the regenerative qualities of letting that blood flow forth, knowing there is always a new supply waiting to refill it.  Loss is as much a part of life as the cry of the newborn child, fox, wolf, of any sentient being.  It cannot be denied if we want to move with the natural rhythm of this earth.  Contemplating all of this, I send you blessings, peace and Namaste‘.  The light of spirit remains however dark our surroundings may seem.  May all of our lights be bright this day, and may strength flow into you like the sap in the trees.

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Posted by: janetlandis | March 11, 2013

Providing Meaning

My son was so tired tonight, his spirit so exhausted.  How can I possibly seek respite from caring for him when I have no way of knowing how many more days we have together?  At 15 he has to tolerate getting help from his mother with showering, eating, getting dressed, and so many other things he would rather do himself.  In order to make sure he is cognitively challenged (because he is much closer to 15 in his ability to think than people realize) we had to find a school that is an hour away.  Two precious hours of his life are spent on a bus everyday so he can get the education he needs and deserves.  Mainstreaming, at least where we are, was never a viable option once he hit middle school.  He was put into a special education class with a mixture of children whose needs were so different from his that he might as well have been an alien from outer space.  That’s  how little his teacher knew about how to teach him.  The name “special education” is completely inappropriate for the variety of needs children bring to the classroom these days.  I don’t blame the teachers.  I’m sure they do the best they can with the resources they have.  When you have a child with an “orphan” disease or a “zebra” as they are called in medical parlance, you have to do a lot of research on your own.  Let me repeat that, A LOT OF RESEARCH, as a parent, not a scientist.  We who don’t see our sons and daughters as “interesting cases” but as living, breathing beings who experience frustration, depression, joy.   That task belongs to parents, and you do your best to become an expert about all aspects of your child’s condition.  Even when reading every word crushes your hopes, or elevates them to unbelievable heights, it is your CHILD that you are reading about, not some lab subject.

Time continues its forward movement, and I’ve watched my child learn to walk, talk, and feed himself   Then I’ve watched in agony as these skills were slowly stolen away.   I can’t count the naps, nights, and post-surgical sleeps  when I’ve held him as I tried to hold my body still, wrenching sobs hitting like earthquakes, and tears runnng like twin rivers from my aching eyes.  There is no pain for a parent like the pain of watching your child suffer.

As any good parent would, (not perfect, good) you try to do as much as you can to make your child’s life a happy one.  Your child hasn’t changed.  Their future may have, and their life expectancy may have, but they have not.  You love them just as much, if not more, knowing that the challenges they face will be so much harder than the challenges of “ordinary” children.  As your child grows and becomes aware of all the ways that their lives will be different, how do you give them “meaning” to hold onto?  Church provides that for many families, but if your faith does not include church and a specific belief system how do you help your child see the worth of living?  As he or she faces the realities that come with his/her condition, how do you help him to see that his life still has rich opportunities?  How do you explain that missing the prom, and the driving test are not the only testaments of how much of a man (or woman) he is becoming?

I want to infuse meaning into my son’s life like an intravenous line infuses fluids.  How do I accomplish that?  We joke about the “butt” print that is in the leather seat where he sits most of the day when he’s home, watching T.V. and playing video games.  These things do not really challenge him, they merely make the passage of time flow more easily.    I want to take him outside and show him rocks, twigs, branches from trees that have fallen…some  connection with nature.  Maybe that’s idiotic, he won’t be able to do theses things once he’s graduated from school.  He doesn’t even want to.  His art though, that tells me something different about his heart and soul.

His art brings meaning to his life in a way I never could.  It captivates me, transports me,  lifts and spins me in directions I never knew existed.  It is his own world, where he imports his OWN meaning.  It gives him something nothing else does, because it is his own.

I don’t know how to infuse meaning into my son’s life.  I need to trust that his bright, brilliant spirit will do that on its own.  I may be able to provide opportunities here and there, but the day upon day hours are his, not mine, to spin into whatever shape and intricacy he chooses.  To imagine anything else is an insult to his intelligence, and a grandiose  vision of my own.  My sweet Daniel, your life is your own, and it is YOU who nust decide what brings you closest to spirit.  May God bless and keep you on your journey, and slap back my hands when they try to intrude.  You are a perfect creation,  and I bow to the effervescent unfolding of you.  Namaste’ my love, your life is its own gorgeous and unique unfolding.   Thanks be to all that is!  May the light of love always guide you, and keep you safely in it’s arms.

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Posted by: janetlandis | February 1, 2013

Being a Nurse

Oh Great Spirit, who watches over us all, from the tiniest single-celled organism to the magnificent artic wolf, please place me where I can be of most help to others today.  My heart is heavy with the suffering of my fellow humans, and our weary earth.  I know people can be demanding, and my desire to help can make that stressful, but please help me to be gentle with those I serve and and with myself.  We are all struggling to make sense of the life you have graciously given us.  We all suffer feelings of disconnection, and still, there are many moments of joy.  Something in us is restless with need, a need we reach to fill with so many things that cause us harm.  Help us to know that our connection to You is where the true healing is.  Help us to know the same about our connection to each other, black to white;  every color to every other; every worshipping Muslim praying to Allah, every Hindu placing flowers on their altars; those who find you in nature, hearing your breath in the touch of wind on their ear; each Christian, Buddhist, Agnostic or Atheist; please find the grace you instilled in each of us upon conception and help us to extend it to one another.

In my weak, miserly state, help me to find Your strength flowing in my veins and give the Great Love You created in me to those I serve.  I am only one nurse, but help me provide comfort to those hurting in body and soul who are in my care today.  Help me to be gracious to all the others I work with, and in thoughts of my family while I am separate from them.  Let me be an example of how You and our mindfulness of Your presence can give us all hope.  Great Spirit, help me to say “Yes” to each moment, as Tara Brach has written, and find Your perfect living light in each being I have the privilege to see.

I bow in deep gratitude to Your wisdom, knowing already You are working within me to transform what is limited and feels so small, into a soul steeped in gratitude and love for every aspect of your creation.  Blessings to all sentient beings, and to all You have brought into being.  Namaste’.

 

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Posted by: janetlandis | January 10, 2013

Healing and forgiveness

Tara Brach talks about three conditions for healing from trauma. 1) Realize it’s not your fault (self-forgiveness) 2) Find some pathway to love or safety 3) Stay present to the feeling – no matter how painful it is – then you switch from the small, contracted presence to the full loving presence. This doesn’t mean you won’t ever have the feeling again, but that you when you do come into that feeling you will contact the full, open loving presence more and more easily. This is the blessing of presence. “When you trust you are the ocean, you’re no longer afraid of the waves.”

First, I have to forgive myself for the “not beautiful” ways I’ve coped with trauma in the past. Second I need to find the source of unconditional love, of loving presence. Third, I need to stay with the traumatic memory or feel it fully while staying in touch with the source of that open, loving presence all around me. This is what will allow me to heal.
I pass this on just as a way to help others heal. Also, try checking out Tara Brach’s website and books. She is really helpful. Namaste’.
Check out Tara Brach

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Posted by: janetlandis | January 8, 2013

Self-Absorption

As I edited my last post, it occurred to me that self-absorption is one of the reasons for my genetic “defect.”  Assuming responsibility for everything requires a pretty sticky relationship with your ego.  It reminds me of cartoons where the characters get stuck in their own “fly paper” and end up a big ball of glue, lint, hair, and other assorted trash.  I’ve been processing a lot of pain about my son who is disabled (marinating in it might be a more appropriate description) and have resorted to eating “cheerfully” colored foods to bolster my spirit. (carrots, clementines – you get the idea)  Along with the pain is the shame I feel in thinking that somehow MY grief is deeper than anyone else’s. It all just gets stickier the more I think about it.  I’ve listened to Tara Brach’s podcasts, which always help unstick some of the mental glue.  Also, despite my lack of faith, reading the poetry of Wendell Brown is magical in its’ ability to snip away at the bindings my brain creates so craftily. (thank you my dear Brother Blogger, for giving so much to the world) http://foreverpoetic.me/

It’s another day, the sun is going down, and soon my son will come rolling up the sidewalk from school. (where he is the student of the month this month – GOOO DAN!!!!)  His smile never fails to bring one to my lips as well, and his dry sense of humor always chases some of the blues away.  He is still here with me.  All three of my precious children are still here with me, and that makes today a pretty fantastic day!!

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Posted by: janetlandis | January 8, 2013

Thresholds

I have always lived with the reality that I have heightened sensitivity.  I am hypersensitive to loud noises, bright lights, sudden movement, and especially to anger – whether directed at me, or  my own.  From a young age I learned not to trust signals from within.  Genetically, I have a “special chromosome” that tells me I am at fault for everything.  When a parent or anyone is angry, I know it is because of something I did or did not do.  Whatever hardship comes my way, including abuse of various types; rape, assault, bullying, abandonment – it all seems karmically deserved.  There was something broken in me before birth, and it has been my family’s misfortune to have to witness me living out this belief over and over.  The  bedrock  I built my self on is my complete lack of any lovable quality.  Again, this was/is chromosomal, not due to anything my parents or siblings did or didn’t do.  In some ways the more they ‘ve tried to show me their love, the more shame I’ve felt at the poor stuff of humanity that comprises my being.  Various professionals have attempted to help me along the way, some with more success than others.  This sounds like “victim” talk, but it is a limiting mindset.  It is me trying to understand how I have at 1/2 a century of life still been unable to shake it.

I stand at a threshold, one I’ve stood at before.  This time I want to think deeply about how I want to cross it.  I’ve had my share of falls, trips, and dives through others.  I’ve visualized what I want for my life, and as with many of us, I have limited its fruition due to  circumstances and self-doubt.  There is no blame here (other than my own) for weaknesses that have held me back, distorted my thinking, and guided me toward self-destruction.  I have been extremely fortunate to have a husband who has been stalwart in staying with me, and insisting on loving me despite all my attempts to deny it is possible.  In his case I have not been as able to use the excuse, “well, he’s family, of course he’s going to say he loves me.”  He’s also one of the most determined people I’ve ever met, and does not give up easily.  (to be fair, my family doesn’t either)  The threshold still awaits, and I’ve taken many steps toward it that have been extremely positive.  There have been negative ones as well.  For those of you who share my particular genetic disability (or have it for whatever other reason) how have you overcome it?  I earnestly request feedback on this, and will appreciate any experiences you would be willing to share.  I will keep them private if you let me know that is your wish.  Namaste’.

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Posted by: janetlandis | November 26, 2012

The Write Life

The one thing I’ve done consistently throughout my life is write.  It has always been a source of pleasure as well as giving me a sense of accomplishment greater than anything else I’ve done.  There are formulas you can follow that will  insure you some measure of financial success as a writer, but most successful writers don’t follow any one else’s rules.  Creativity can be courted, pursued, even seduced but it cannot be lashed to a wagon to  transport you reliably through your journey in life.  Neither can it be reduced to a set of calculations that when worked correctly give you a great novel.  Writing is art, and like any art form, it is capricious, elusive, and maddening.

I’ve gone through orientation to a new job the past two weeks.  Starting today, I am supposed to be putting in another five days of learning how to do it correctly.  As any of you who have read my blog posts know, my life is complicated to say the least.  Constant vigilance is required to make sure my son with Ataxia-Telangiectasia (www.atcp.org) stays healthy, and even then we cannot completely protect his lungs.  We have to constantly weigh quality of life against quantity of life, and I honestly don’t know how to work that out to ensure his longevity.  He’s 15-years-old.  Can you imagine telling a young man of that age, “Honey, I’m sorry but if you want to live as long as possible, you have to stop eating and drinking.  Oh, and even then I can’t guarantee how many extra days or weeks that will give you before this condition you have takes your life.”  Of course you could find other ways to put it, and I’ll admit to wanting to do that at times, but how can I selfishly put my wish to have him here with me above his desire to be as “normal” as possible?  He gets the most time to “hang-out” with his friends at lunch.  Yes, he could sit there with his pals and not eat, but he likes food and sharing that with others is basic to most human lives.  Even his pulmonologist doesn’t suggest taking that away from him.

My husband is heroic in taking over for me when I’m at work, but he has limits (as we all do).  I find it a cruel irony that health insurance would cover having a nurse come in to care for our son, but won’t pay me (a licensed RN, with a Bachelor’s Degree in Nursing) to do the same thing.  I cannot find a nursing job that fits with my son’s hours so that I can work enough to provide health insurance for our family, and take care of him as well.  All of this is secondary to the fact that I’d rather be writing.  I wonder how many authors would have been able to succeed financially without a working spouse (regardless of gender) or the good fortune to live in a country that provides health insurance to its’ citizens as a basic human right?

I wish that our President had skipped the “Obama-care” and gone right to a single payer system.  I appreciate the benefits he’s been able to add, but having a single payer system would eliminate many of the issues that are coming up now, like employers cutting hours or adding surcharges to avoid paying for their employees to have health insurance.  I don’t know what the answer is in our situation.  All I know is that I can’t provide the best care to others when I’m constantly worrying about my husband and children the whole time I’m at work.  Especially since I’d really rather be writing.  I would love to hear how other writer’s and/or parents of “special children” have been able to work this out.

Namaste’.

 

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Posted by: janetlandis | November 15, 2012

The Mystery of Healing

Many walking wounded (or rolling, as the case may be) are among us.  Buddhism teaches that pain is inevitable in life, but suffering is optional.  A primary lesson the Buddha taught is that pain + resistance = suffering.  It’s not the easiest concept to digest when you or someone you love is in pain.  It can begin at birth with a slap on the bum from a friendly doctor or birth attendant.  One minute you’re floating in a warm, comfortable sea of fluid, and the next thing you know you’re being squeezed through a narrow opening out into a very bright, noisy, and wide open space.  The boundaries of  the life you’ve known are suddenly gone, and you find yourself pinwheeling your arms and legs through open space.  I had one child in a hospital with a midwife, and watching him go through the free fall that birth in a medical facility can be convinced me to have my other two children at home in a deep, warm pool of water. (I’ll be honest, it made it a lot nicer for me too!)  It was, and still is, a controversial decision, but that isn’t what this post is about.  A physician named Michel Odent (www.birthworks.org/site/primal-health-research.html) and countless midwives {including a saint of a woman named Ina Mae Gaskin (www.inamay.com) and my personal heroine, Ginger Breedlove, (www.kcfree.org/profiles/volunteer-stories/Ginger-Breedlove )} can address that issue with much more authority than I.

I’ve posted about pain before and with my new job will probably continue to.  The reason it is so present in my mind and heart today is because of my husband, Kevin, who I adore.  For close to a year now he has woken up in the early morning hours, (3:00, 4:00, and so on) in such intractable pain that he cannot get back to sleep.  He’s spent years learning his own body, and because of that he can give me ideas to help his pain become bearable.  I am a Certified Reiki 1 practitioner, (thank you Amy Rowland www.traditionalreiki.com/) and have given Kevin some treatments that have helped.  Even when I’m not using Reiki though, the training Amy gave me helps me to connect with spirit.  Kevin had a number of spinal surgeries as a child, and the scars and nerve injuries he was left with are unique.  He has a long-term relationship with severe discomfort, and in the darkness of pre-dawn, I can feel his restless movements when the pain has interrupted his sleep again.  He can usually coach me on what to do and where to do it, whether it’s scratching, pushing on pressure points, or having me push my fingernails into his scar tissue, leaving half-moon shapes etched in a chain up his back.  It is one of the most intimate parts of our marriage and brings up myriad emotions.  I feel privileged, and humbled that he trusts me enough to share this with me.  I feel a deep joy that is indescribable when he sighs or groans in relief, letting me know I’ve “hit the spot.”  The best part of all is when there is still time to hold him or be held by him and feel  his body relax, hear his breathing as he settles back into sleep and know that I’ve played a small part in helping that happen.   It is not easy being that vulnerable to another person, especially when you are a strong, independent man used to taking care of yourself.   It is one of the most precious gifts he gives me, a testament of his love that brings tears to my eyes.

It doesn’t last that long, unfortunately, but he doesn’t hold that against me.  He is willing to let me try again when I can convince him that he’s not depriving me of anything I need.  Every moment of that time is a living prayer from me that the mystery of healing will somehow come through my hands and give him some measure of relief.  It is so hard to stay physically open to other people, especially if you have “differences” that make you stand out from others, real or perceived.  We don’t know why healing happens in some cases and not others. It is still a mystery to healers of all varieties.  In those moments my husband and I share, there is no question that healing occurs for me. It is my hope and prayer that it provides some healing for him as well.  May you allow yourself to give and receive healing today, and every day.  Namaste’.

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Posted by: janetlandis | November 14, 2012

New day, new job

Today I start work for the first time outside our home in two years.  I was up until 1:00, up again several times because of pain, and am now  hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation.  A part of me wistfully wondered what it would be like if our middle son, who is 15, was not afflicted with this horrible disease called Ataxia-Telangiectasia.  I wouldn’t be up so early, because he’d get himself ready for school.  He wouldn’t have to suffer through 5 respiratory treatments along with two other liquid medicines and four pills.  He’s be able to sleep later himself, and the dark circles that are a constant under his gorgeous green-blue eyes would be transitory.  Knowing our son, he’d probably have broken several hearts, or at least have had several girlfriends by now.  Instead, every moment he spends awake takes more energy than I can imagine.  He has become left-handed, not by choice, but because his right hand shakes so much he can’t really use it for much.  Video games are becoming harder and harder for him to play, and he has a two-hour round trip bus ride to get to a school where there are kids he feels comfortable with.  Kids like him.

In addition, he’s been coughing for weeks now.  His doctors look at me sympathetically, and say there’s basically nothing else they can do that won’t make his life even more miserable than it already is.  I’ll spend the day worrying about all of my kids, but especially him.  The bright spot was a gift I was able to give him last night.  When I reminded him that I would be working today, he looked stoic but depressed and said, “And I’ll have to have some nurse come in and take care of me.”  ”No honey,” I replied, “You will always be my first and most important person to care for.”  I may have to lose some sleep, but to see the look of relief that came over him when he realized that for now his life would stay basically the same…there’s nothing that I wouldn’t be willing to give for that.  I can’t help but think of my husband’s parents when he was young and in the hospital for weeks, months at a time.  His Mom would come in and out during the day, and his Dad would come after working all day on his feet doing hard, manual work, and spend the night.  This pattern was repeated constant times, with his sisters at home missing their Dad, I’m sure.  They didn’t complain though, not one of his family.  Just as with our son, his family knew that the suffering their child and brother was enduring was far worse than whatever they were giving up to help him.  They had another characteristic that helped them.  A deep, enduring faith in God.  It may have been shaken at times as they had to stand by, as I do, and see their son suffer, but somehow they held on.  I pray with all my heart that I can find just a little of that faith myself today.  Some link to spirit that helps me keep walking through the day, smile with my new co-workers, and drink coffee.  A LOT of coffee.  Namaste’, and may God Bless all of us on this spiritual journey in our human forms.

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Posted by: janetlandis | November 12, 2012

Letting go of my daughter.

Mindfulness is a practice of staying in the present moment with your experience, regardless of what it is.  Pain, joy, anger, peace; whatever comes up.  My daughter recently went through a stage of wanting to be close to me frequently, to spend time alone together, and show her affection openly.  There were times when it was irritating to other family members who wanted my attention, but I loved it.  I adore my boys, and having sons is an experience precious in its own way.  Feeling that bond with my daughter was priceless though.

Now, in what seems like a matter of moments, she has become moody, distant, and wants little (if anything) to do with me.  We used to text “I love you SOOO much” back and forth to each other; smiley faces, and hearts flew across the wireless network between us.  These days I consider myself lucky if she says, “me too” when I say “I love you.”  This child (who is my youngest), was the last to give up our nighttime ritual of  ”kissing hand” (copied from the renowned children’s book), and blew me kisses from her bed as I went through her doorway at night, then when I reached the landing, and again when I was all the way downstairs (with me blowing kisses back).  In a single night she disavowed all of it.  She lets me kiss her on the forehead at night now, and give her a hug that she doesn’t return.  The pain of this rejection has been very hard to stay with in a mindful way.

The other morning my daughter was using her now all too common clipped answers to my questions, and I felt anger rise up in me like an earthquake.  My husband was in the kitchen at the time, and as he watched helplessly, I walked away (hearing him whisper, “please tell your Mom you’re sorry”) and retorted, “that’s okay, if she wants to spend all her time hating people that’s her choice.”  Immediately, I felt myself transported back in time to a moment where I told my mother (at close to the same age) “you don’t really love me.”  When my father heard this, he ripped me apart with his words, and his anger reduced me to microscopic size for saying something so hurtful to my Mom, who I knew loved me more than her own life.  Ouch!  A sense of deep shame washed over me, and an indescribable helplessness.  I had purposely hurt my child, after vowing I’d be different from my own parents, and there was no way to take it back.  Shaking, I walked over to her, took her hands in mine and said “I’m so sorry.”  ”I felt hurt because of the way you were treating me, and I purposely said something to hurt you back.  It was childish, and small, and I wish with all my heart that I could take back the words, but I can’t.  I know you don’t spend your time hating people.  You are a loving and devoted friend, and have such a kind heart.  What I did was wrong, and there is no way to make it up to you.  I’m so very sorry.”  (tears were in my eyes now, and in my husband’s)  Looking at the floor, my daughter replied, “it’s no big deal Mom.”  ”Look at me sweetheart,” I pleaded, and when those huge, sky-blue eyes met mine, I could see the wall I’d created between us.  ”It IS a big deal.  I’m an adult, and I acted like a 2-year-old.  I’m so very sorry, and I will try to make it up to you somehow.”  ”Whatever,” she replied, “I didn’t even really hear what you said,” and she dropped my hands.

This is what mindfulness can help you avoid.  Pema Chodron once said, (and I’m paraphrasing) “A moment of anger can destroy years spent building trust.”  I know the truth of that from BOTH sides now.  I can only pray that if I keep practicing I can prevent this from happening again.  Letting go of my daughter feels like having my fingernails slowly ripped off, one by one.  At the same time I’m so proud of her and the young woman she is becoming.  She’s developing a great relationship with my husband, her Step-Dad, after years of him feeling the rejection I do now, all while staying calm about it around her.  Parenting, like growing older, is not for the faint of heart.  It is one of the most difficult journeys we make in life.  I’m still ashamed, remorseful, and contrite, but I hope that perhaps some wisdom may have come from this that will help me keep my mouth shut when this happens in the future.  I wish the same for every one of us.  Namaste’.

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