I’m sure it’s a question that has perplexed psychologists for eons. Do we assign cell phone ring tones to our kids based upon what we perceive their personalities to be or do their personalities evolve to fit the ring tones we assign them? Back in the early 2000’s when ring tones were the thing I had different tones for each of the kids. Sophia was “The Time Warp” from Rocky Horror Picture Show, Manu, “Paint It Black” by The Stones. The ring tone for Lisa, our eldest daughter, was “Tubular Bells,” the theme from The Exorcist. One day I was at work and Lisa called just as I was delivering a baby. As I placed the baby up on the new mum’s chest I said congrats, it’s a girl. But all the mum could say was “Oh my God, did I just deliver to The Exorcist?” I was going to say, “In about 14 or 15 years you’ll understand,” but thought better of it. I delivered the placenta, cleaned up and switched my cell phone to vibrate where it has remained ever since.

Screen Shot 2016-06-19 at 12.42.00 PM

Our youngest daughter Sophia once informed me that the only reason she ever came home from college was to get in the blog. Last week she graduated from Knox College with a degree in Environmental Studies and moved back home to help out and take care of me. So I guess I owe her a shout out. But where to begin with Sophia? Perhaps the enthusiasm with which she plans to pimp my wheelchair ride? Or maybe the way she casually reaches out and pinches off a stream of saliva from my chin and flicks it to the ground without so much as skipping a beat in the conversation. While I appreciate the matter-of-fact way she tends to my ever increasing daily needs, to be honest I could probably do without her referring to me as “Mr Droolypants over there.” So yeah, Sophia. Where do you begin with Sophia? I’ve got it. How about we begin at the beginning.

Ray and Rae May 30 2016-28
June 8, 1993. Covenant Hospital. Urbana, Illinois. Rae had been laboring at home since the morning. We were in no hurry to get to the hospital but around 3pm there was a severe weather warning so we decided to head in. Our midwife Lisa Miller greeted us at the door and helped check us in. Rae’s mom and our eldest daughter Lisa, who was 4 at the time, also accompanied us. Progress was slow and after about 5 hours Rae had only progressed from 3 to 5 centimeters. It was a little disheartening to say the least but our daughter Lisa kept us grounded. While eating some cookies she nonchalantly observed “I’m having a snack and you’re having a baby.” In fact she was probably the most composed person in the room. Eventually our midwife suggested breaking Rae’s water to help move things along. Almost immediately after that Rae felt the urge to push but she had only just been at 5 centimeters dilated. Something similar had happened at the birth of our first daughter in England. Rae had the urge to push but the midwife wouldn’t let her because she wasn’t fully dilated and we thought history was repeating itself. This time though she wasn’t told not to push. Using my newly acquired labour and delivery nurse coaching skills I tried to do my part and encouraged Rae to blow through the contractions. Her response was to put her arm around my neck and bring me in close. I thought she was going to breathe with me but instead she looked me in the eyes and told me in no uncertain terms to “STOP. BREATHING. MY. AIR.” Then with the next contraction she made a primal bearing down groan that encompassed every fiber of her being. If you’ve been around laboring women long enough you know it’s a sound that regardless of dilation, can only mean one thing. Our midwife pulled back the sheet and told the nurse “Get me gloves quickly.” The nurse asked what size but by then it was already too late. I looked down and saw a head emerging. It really is a moment that defies description. But my first thought was surprisingly one of recognition. I know this person. When all I could see through my tears was a profile of a baby’s face against Rae’s thigh. Before she had fully emerged. Before we even knew if she was a boy or a girl. All I could think was that I’ve seen this person before. Rae and I have a template. Then the midwife guided Rae’s hands to reach down and birth the rest of the baby herself. This is how we met Sophia. But at the same time it seemed like we’d known one another for eternity. It’s weird. Some things you just can’t explain.

Sophia debut
Have you ever wondered how a bubble holds its form? Magic that’s how. Oh sure. You can look on-line and probably find some crap about surface tension and atmospheric pressure but that’s just there for the non believers. On the days leading up to the 4th of July, Rae will test various bubble mixtures, making adjustments for the predicted humidity. Then on the actual day she stands by the side of the parade route with her bubble wands and puts on a show. Kids gather around. People on floats stop waving at the spectators and instead applaud her bubble art. People come up and take pictures. People stare as bubbles float by, surface undulating but holding form. If you look closely you can see the entire cosmos swirling back and forth on a thin iridescent film of soapy water. Surface tension, my arse. Some things you just can’t explain. Clearly, magic is afoot.


Several people have asked me about my favourite Leonard Cohen lyrics with the idea of getting a tattoo. Most recently our eldest daughter Lisa. Asking me to pick a favourite LC lyric is akin to asking me to pick a favourite child. However, I can narrow it down to a fairly short list without too much effort. For Lisa I suggested the opening lines of “If It Be Your Will.”

“If it be your will
That I speak no more
And my voice be still
As it was before”

Then she asked where I thought she should get it. Now Lisa already has eleven tattoos but I knew right away where I wanted her to get this one. “Across your heart” I responded. “I like the idea of my grandchildren meditating on the words of Leonard Cohen while they breastfeed.”IMG_4022_2

Rae’s job has been to keep my weight up and in the past I would often feel her poking my hips at night when she thought I was asleep and sighing disaprovingly. She no longer does that. Instead she now lays her hand on my chest to make sure I’m still breathing. Apparently the longest I’ve gone without a spontaneous respiration is twentyfour seconds. To this end we were given a new BiPAP machine. This one breathed for me instead of with me. Getting the right pressure settings is something of a trial and error affair and this one was programmed with considerably higher pressure to expand my lungs maximally. Problem is that once my lungs are full the rest of the air backs up in my mouth and the mask. And since my lips have no muscle tone they billowed out away from my teeth with each blast of air. Essentially, every three or four seconds, I looked like a guffawing chimpanzee. After one night we switched back to the old bipap.

I’ve heard it said on many occasions that you’re not yourself in labor. But I would beg to differ. In fact, I would go so far as to say that who you are in labor is the purest form of you there will ever be. Your station in life matters not at all. All of life’s fluff is stripped away and it’s just you trying to get through this event. I’ve always seen labor as one of life’s great equalizers. Of late I have been spending a lot of time pondering the similarities between birth and death and helping people through these transitions. The event itself is similar in its equalizing effect. There is no hiding from it. And in confronting it I am forced to face the reality that, for better or worse, this is who I really am. Or more to the point, this is who we really are. This is Rae and Ray.IMG_6599_2

Have you ever wondered how a relationship holds its form? Some time ago a work colleague asked me what it was like to be married to the same person for more than three decades. To  which I responded you can’t stay married to the same person for three decades. If we were the same people we were when we got together we wouldn’t still be married. You have to evolve. That being said, I also believe that somewhere down inside there is a core essence to every relationship that for, better or worse, holds firm throughout it’s duration. The other day I was looking for a photo of me and Rae that I had taken in the mirror. It was just us goofing off a few years ago. But it might as well have been another lifetime. I wanted to compare it to a more recent photo. All I could see was the degree to which my body had deteriorated. But Rae saw it from a different perspective. It’s still Rae and Ray she said.DSC05256


Ray April 28 2016-39The other day I asked Rae if she could remove some unwanted body hair for me. As she did so she commented “aren’t you glad I don’t keep a blog?” Which got me thinking about how weird some of our personal grooming and hygiene habits are. The sort of things you don’t really think about until you have to ask someone else to do them for you. A friend texted the other day with a simple question. “What made today great?” I thought about it for a moment and responded “I can still wipe my own bum.” It takes a little maneuvering. I have to lift a butt cheek and sit on my hand to hold it in the right place but it’s doable. Since my diagnosis, as I pondered diminishing ability it was always wiping myself that came to mind. But peeing has its finer points too. When our son Manu helps me to the bathroom, before pulling my pants up he will take me by the shoulders and give me a shake. I’m not sure that this achieves the desired effect but bless his cotton socks, he’s the only person who thinks to do this. Rae for her part is a little more practical. She says she’s going to write a couple’s therapy book. “Things To Ask Your Partner Before You Have To Wipe Their Ass.”

I have spent the better part of the last quarter of a century working in hospitals and clinics taking care of people. But I don’t think it ever once crossed my mind in all that time that I would one day be the one that would need taking care of. Have you ever wondered how a family holds its form? Someone recently commented that after they had been out of town for two weeks, upon their return they  didn’t know how to help out because the dynamic in the family had totally changed. Which is true to a certain degree. I wish we could adapt and then just sit back and enjoy the victory. But that isn’t the hand we’ve been dealt. Every day is a new challenge. But for all the upheaval our family is facing, as I look around me, it’s still us being us. The core essence holds. Sophia is out playing Ultimate Frisbee. Lisa, Manu and Jack are at a Mexican restaurant with their cousin Rachel. Me and Rae are having supper at home and watching Nurse Jackie. I just happen to be wearing a breathing mask and am being fed through a tube. But that’s who we are. For today at least. Like a bubble floating by, surface undulating but holding form. If you look closely you can see the entire history of our family up to this point swirling back and forth before you.

IMG_6576Peace, love and midwives









21 thoughts on “Bubbles

  1. Wow. Wow. Wow. Worth the wait. I need to come by on July 4th and join the adoring masses. Love, Lynn

    Sent from my iPhone



  2. Ha ha ha! So glad to hear that your thoughts about assigning ringtones are ‘universal’ to parents! Thank you (as always) for articulating so many deep and amazing thoughts that we all have but never knew we had until you so brilliantly put them into words! You are all truly wonderful!
    Love Deborah


  3. I share your blog with my Essential Tremor group, which is international, so they can understand how to face adversity head on. Ray your writing is amazing and so are you and your family.


  4. I agree about birthing. And thst our children can display who they are in the way they are born, and in the way they approach the world. I wonder what you were like as a child? I imagine Rae as she is now, in her essence. But smaller.


  5. Ray & Rae
    I don’t believe I have met you but I went to school with Rae. I remember her as a carefree sweet person. Today as I read your journal I am humbled by your words. The part you wrote about a women in labor defines who she really is. Your journey is an inspiration and I appreciate you sharing it. May you have the strength to get through each day. Thank you.


  6. Matt and I enjoy reading your blog. You’ve done so much for our family Ray delivering Simon and helping out with Miles and Walt. You made my midwife visits easier and matt and I appreciated your honesty since I was 39 when I was pregnant with Walt. You made the process so much easier and I can’t thank you enough for being a part of it. We are always thinking of you. Love The Lunsford’s


  7. Steve and I read your wonderful blog while indulging in a glass of wine…..The bubbles made us smile and think of our last afternoon together!


  8. Love the concept of life like a magical bubble. And that this moment with others reflects the history of our relationship together. Wishing you a great today! Love, Malii (introduced to you/your blog by Irene 🙂


  9. Thank you, Ray, for your precious stories. I am so grateful our paths crossed as you helped me prepare for the birth of my 4th. You are always in my thoughts and prayers.


  10. Have been reading your blog since we completed our cross country ride and witnessed you completing yours. Your words give such a sense of order to what must be physical and emotional chaos. You put life in perspective.

    Meeting you and Rae was the highlight of our trip. You touched us deeply and inspired us completely. Our love goes out to you and Rae and all the rest of the family.

    Thank you for sharing your journey.


  11. Ray you dont know me, I know Rae from many moons ago as little dancers in a ballet class above a laundry mat in Champaign .. I moved to LA 38 years ago ..

    2010 my sister Wendy took me to a party at your house where we briefly met ..
    my sister has spoken of the Ray’s many, many times .. she loves you both
    Im in Urbana visiting my parents and today I bump into Rae at Meadow Brook Park and she told me of your blog .. I just finished reading it .. I have a plie of kleenex next to me to prove it. Your a heart breaker.. I mean that in the best sense

    After reading about this journey your on I cant help but say how wonderful it is that you have made a differance with your life .. you inspire me to do the same ..you are a voice for a cause that needs hearing, your insight is both alarming and beautiful and so thats life ..we are all on the path , (your on a bike) and we will all have the same outcome, its people like you that leave behind their heart & soul that help us carry on ..


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