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.

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’.

 

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/GingerBreedlove )} 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’.

Shared Grief

Yesterday a family who has a son with A-T (www.atcp.org) found out that their infant daughter also has it.  Many of us have played genetic roulette without even knowing it.  Genes mutate, and there is no way we can know all the mutations we carry.  In the case of A-T, all it takes is finding that one other person who carries the recessive gene, and you have a 25% chance with every pregnancy that your child will have it.  Most children aren’t diagnosed until they begin to walk, or start having frequent infections.  My son was almost 3 when he was diagnosed.  He had an older brother (2 yrs older) and a sister about 9 months old when we found out.  There are families who have three or four children with this condition.  Imagine sitting in a physician’s office, often far from home, and being told your child will be in a wheelchair by the age of 10, and most likely die in his/her teens. (more often now the kids live into their twenties)

Life-shattering.  That’s what it was for me.  Totally unexpected with few, if any, upbeat reassurances from the specialists.  This family is starting a journey they never thought they would be on.  All of us who have special kids, regardless of diagnosis, have to learn a new vocabulary, a new road map (is Grandma’s house accessible or inaccessible for wheelchairs, is the bathroom accessible?) and summon up a cheerful persona with great strength to get your child(ren) through all the procedures, needle sticks, machines, medicines, and losses.  You have entered a strange, new world that you and your child will have to traverse together.  Those of us who have gone through heart-stopping news like this, whether it is our own diagnosis or someone we love, we will share in your grief as we all walk this strange new path together.  Namaste’, Blessings and Prayers to all who are living with the grief of a limitation in your own life, or the life of someone you know and love.

Nameless energy

I find that when I don’t write for several days I have a tendency to wake-up with a nameless energy that feels like anxiety, or panic.  That has been one of the reasons I’ve wanted to write my whole life (literally and figuratively).  Two nights ago we (my husband, sixteen-year-old son, and I) spent a while looking at photos of Daniel when he could still walk, run, climb, and seemed just like any other kid. (except that he got sick pretty often)  Moms of kids with A-T live on a razor’s edge of hope.  We are the ones (usually) who provide the treatments they hate (at least in my case – because Dan has no IgM his respiratory needs are many), stay with them in the hospital, and try to help them make sense of what is happening with their bodies.  It’s not an easy job, and I tend to think of us as warriors.  That doesn’t mean we don’t break down occasionally, but we also develop an inner core of resilience.  We walk in the shoes of other mother’s when they lose their A-T kids, because each one feels like our own.  We’ve seen the limits of medical science, struggled with our feelings about stem cell research and other potential “cures” or treatments, and spent more time on our knees or in hospital chapels praying than anyone I can think of other than monastics.

What we never lose is our love for our kids.  They enlarge our hearts, challenge our spirituality (because they seem to have an innate spirituality of their own), and break down any walls we might have from our “pre-A-T” lives.  While watching my son’s suffering is never easy, I wouldn’t give up the experience of knowing him, of loving him, of having the privilege of being a part of his daily life, for anything.  I’ve spent countless hours blaming myself for his condition (it hasn’t helped), kicking myself for not picking up on warning signs of impending infections (although this has gotten less frequent), and realized that none of that is as important as cherishing every moment he and I have together.  My Daniel is, indeed, in a lion’s den; but he has me by his side, along with his Step-Dad, Father, Grandparents, brother and sisters to help us.  The lion may win in the end, but it is Aslan, whose claws are always drawn in, and the spirit of life in every living thing that brings my son joy and the strength he needs to fight. (for now).

Today my heart is with all the A-T Moms who have lost their children, most recently, Pamela Skyberg Digby, who lost her son Jared less than a month ago.  May we all find strength for this journey, and may Jesus or Jizo (guardian or travelers and children) guard and protect our children as we go day to day together, thankful for each moment.

Peace to all, blessings, and Namaste‘.  (if you’re interested in finding out more about A-T, go to www.atcp.org)

Making peace with pain.

Constant physical pain in some part or all of my body has been my reality since about eight months after my son was diagnosed with Ataxia-Telangiectasia in July of 2000.  It started with pain in my arms, then my legs, which led to all over body pain.  I saw many doctors, had many tests, and no one could diagnose what was causing the pain.  After my marriage ended, I tried to live on my own for a while, but ended up in so much distress that my family rescued me.  My four siblings came, helped me pack up my three children, my things, and move me to be closer to one of my sisters, Anne. (www.annehills.com) She took our whole family into her home, alienating her own family at times, until we could get an apartment at the complex across the street from her home.  She drove me to doctor’s appointments, was my advocate, and at the same time was getting a Master’s Degree in Social work, raising a teenaged daughter who lost her privacy with our presence in her house, and was travelling all over to play concerts of her folk music, which is sublime.  The doctor she took me to did not believe fibromyalgia was a valid diagnosis and did his best to find out what was wrong with me.  It’s been close to a decade now that he’s been seeing me, and he has finally decided, grudgingly, that if there is such a thing as fibroymyalgia, that’s probably what I have.  Lately, I’ve had the additional delight of headaches added into the mix, which was never a problem before.  My medication levels have stayed the same for years, and have only gone down if anything.  I’m proud of that.  Despite the early days when I had to rub Ben-Gay on like lotion and wrap myself in ace bandages from head to toe, I mostly functioned.

Strangely, the headaches have been the most debilitating symptom I’ve had to cope with.  It’s hard to read, write or do anything much when your head is constantly pounding.  Like most people with chronic pain and/or illness that is an “all in your head” type of dis-ease, I’ve sought out alternative methods of healing.  I’ve had mixed success with them.  This is not in any way intended to be a “bore you to death”, whiny blog post.  It’s more of an explanation for why I haven’t been posting lately, and a plea to the universe to help me figure out the way to heal.  I don’t imagine I’m the only chronic pain, chronic illness patient who has become desperate for some relief.  Added on to this is the reality that no matter how lousy I feel my son depends on me for much of his care.  He is a source of joy to me, but I guiltily wish for respite care at times.  He has a wry sense of humor, is an amazing artist, and I’m grateful that he is in my life.  Prior to his diagnosis I was a critical care nurse who practiced yoga daily, rode my bike to work, and was relatively stable.  Perhaps if I hadn’t already been diagnosed with PTSD years before I was ever married, my physical collapse could have been avoided.  I don’t know.  It’s hard to know how much the shock of his diagnosis contributed to what came later.

Why can’t I just make peace with the pain?  That is one question I have not yet found the answer to.  It’s wreaked havoc on the life of our family, even though I was lucky enough to remarry in 2005.  Sleep tends to be light and elusive, and few people have any patience with my “illness” anymore.  (Why should they, I don’t!)  If there was some way to use it to help others that would be something but as long as the headaches are my main symptom, I can’t do much to help others.  So, what’s the answer?  There probably isn’t one.  It’s the perfect Buddhist lesson, forcing me to confront the fact that there is no solid ground under my feet.  It’s hard to stop groping for a solution, grasping for health that eludes me.  Finding a purpose for it or a way that it can be of benefit to others would be such a blessing.  I am so thankful for the blessings others are giving me, and the connections I’m making related to the pain.  Valerie Johns and her incredible Jizo‘s and Chibi’s.(jizoandchibi.com)  Kathy Tooley and all the wonderful women at Anahata Yoga and Wellness Center (www.anahatayogawellness.com), my family who stretches the limits of their patience to put up with me. (Thanks guys)  My incredible husband and precious children, one with an “expiration date” to quote a recent episode of the T.V. show “House.” (www.fox.com/house/)  My gratitude for all their love and help is peace in itself.  Blessings and peace to all.  Namaste’.

Fatal

When your child is diagnosed with a fatal condition at the age of 3, your life is changed irrevocably.  Hearing they will lose the ability to walk, feed themselves, and be independent is hard enough, but putting a limit on the number of years you will be together is catastrophic.  The neurologist tried to put things in perspective with the following analogy:  say you’ve been planning a trip to Italy.  Saving money, learning the language, imagining all the places you’ll go, and the experiences you’ll have…finally the day arrives and you get on the plane to Italy.  Only the plane lands in China, or Greenland – somewhere completely unexpected, a place you are totally unprepared for and hadn’t planned to go.  “You have two choices,” he said, “you can either bemoan the fact that you didn’t get to Italy or you can enjoy the opportunity to visit somewhere you never expected to go.”  It’s a nice analogy, except being told your child will die before you do isn’t like finding yourself in a country you never meant to visit.  It’s like being dumped on another planet with no oxygen, no recognizable landscapes or food, and no way back to where you once were.

Numb, you look at your beloved child and nothing about him or her has changed.  You ask the doctors a thousand times, “are you sure?”  Gradually, you begin to find other families going through the same thing you are.  It is a link you cling to for hope and help, a lifeline of information and inspirational people.  Then you start going through their pain as well as your own.  Children you’ve heard about for years actually die, and you grieve each death as if it was your own child, because it is.  You pray, beg, plead for each life to be spared.  You shatter when they are not spared, and wonder, “how many days do I have with my son or daughter?”  You feel an irrational sense of guilt for passing something on that you didn’t know was hidden in your DNA.  Countless nights, in hospital beds and at home, you weep as your child sleeps, making sure you don’t wake him or her with your convulsive sobs for his or her suffering.

You also treasure every moment you have together.  The world may have radically changed it’s axis, but you still have your child (for now) and revel in every smile, just as you hate yourself for every procedure you have to make them go through to be healthy, hoping your presence at his or her side will mitigate some of the pain.  Looking in the mirror, you see a face you no longer recognize, but hope your child does.  Yes, we all have a fatal condition the day we are born, in a sense.  There is mystery though, and hope for a long life.  The doctors give you the statistics, “most kids with this will die in their late teens or early twenties”, and you want to scream “take it back!”

Then, for some of us, as readers of my blog know, you process it over and over again.  Especially when another precious child who shares your child’s diagnosis is laying in an ICU, fighting for his or her life, and you pray with everything in your being, “beat the odds”, “live, please, dear God, make those doctors eat their words, and let my darling son (or daughter) live.”  It’s high stakes, but you gamble anyway.  What choice do you have?

May peace, blessings and compassion fill your days.  Namaste’.