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.

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’.

Baby Steps

There are mornings I get up, like today, and don’t know how I’m going to make it. The chronic pain I’ve had (along with the PTSD, anxiety attacks, and depression) cripples me and limits me in ways that make me feel down before I even get up. I finally have this wonderful opportunity to work again, and do something to help others. I’ve always loved that about being a nurse. Our house has been such a chaotic mess this whole week though, whether because of the hurricane, election, days off for kids, broken instruments, seeing my darling son’s spine on an x-ray from two years ago and realizing just how many inches his disease has robbed him of in height. Several new medicines, along with treatments he’ll need to not be coughing constantly…this morning I just don’t know how I’m going to do it. I’ve learned some Reiki and want to learn more, I want to feel a connection with spirit, and come closest to feeling it when I’m practicing yoga, writing, or meditating, none of which I’ve had time for or feel like I have the energy for today. This is a very whiny post, I apologize.

The thing is, I’m taking baby steps back to spirit. I watched my son learn to walk, and then lose it. Learn to eat, and then not be able to feed himself anymore. At the same time, the agony fried my nervous system, and I now have phantom pain, or complex regional pain syndrome or fibromyalgia, choose whatever name fits. My baby steps are filled with falls related to these things, not because I think I’m special and shouldn’t have to cope with pain, but because there are days I don’t know how I’ll make it through and spirit seems so distant. In my heart and soul I know it’s as close as my own breath. My tank of strength feels empty, and just as so many of us need to do, I need to find a way to fill it. So I think of my spiritual energy providers, the A-T families I am in touch with, the incredible beauty of my fellow blogger, Wendell Brown‘s poetry (www.foreverpoetic.wordpress.com), Rumi and the other poets who seem to live with Spirit in their every moment of being. It is an honor to to read their work, and share the journey we are all on. I’ve put it out there to the universe, and to all the spiritual beings who provide the light on my path (including my loving family – “nuclear” and extended) and today I hope God will forgive me for asking for help. I may not be able to get down on my painful, shaky knees, but I ask for a sense of presence beyond my limited human one as I try to navigate this day of challenges, and to find joy rather than hopelessness in the tasks I need to accomplish.

Finally, I give thanks from the deepest part of my being for the love of all those around me. I bow in gratitude to my adopted family, the Landis, Blum, Derstines; to all my siblings and my parents, to my children and my amazing husband, and to those people who give of themselves to help the rest of us stumble closer to finding our connection to our Spiritual self, Wendell Brown; Rumi; Tara Brach; Pema Chodron, and so many, many more regular people who amaze me with their strength and faith. May we all feel the presence of the One who brought this universe into being. Namaste’.