Today, we celebrated life…just because…….
Another long day at the hospital, from about 12:30 to 6, and it FLEW by! (of course we had a little party…see pictures) What is this time-warp thing that goes on with ‘hospital’ time?
Tim’s boss’s father is a doctor and came by to see Tim today and told him he looked great – which he does – and that he’s doing well. Tim’s doctor, the lovely Marie-Christine Ngirabachu from the Congo (she has a very dark chocolatey complexion with at least 1 million braids in her hair, and she’s gorgeous, sweet, compassionate and full of info) told him he was doing great. This made for a very upbeat morning, and it feels great to be told you are on the mend.
The last 2 days have been another marker for all of us, I think, and we were all a bit tired and low key, but this morning and afternoon, it was joking and playing and laughing…very fun – in the moment and very much present with each other.
And then the party. The resident shaver/naked-head-massager came by in late afternoon to trump chemo and just shaved Tim’s head instead of just letting all the hair fall out everywhere – We snapped lots of pictures.
Started out with a Mohawk and we were pretty sure he needed some tattoos to go with it. But then the whole thing came off, and he got a great scalp massage – with a promise for a foot/leg/hand massage on Friday (nice upgrade in the hospital!).
I think he looks great. Sexy. Cute. And I was a little worried about that huge flat-in-the-back polish head of his being bald, but it’s delightful! I could be a motorcycle babe on his arm when he blows this joint! …after some appropriate tattoos, of course.
We are going to start the search for a doctor at Stanford. Once we have one, bone marrow match test results can be sent. Tim’s brothers are the best possibility for matches, but anyone can join the registry. That’s a bit down the road, I think, but we truly don’t have a definitive schedule yet. And it’s really not a bone marrow donation, but blood and stem cells…much less invasive and MUCH less painful (if any pain at all) and fewer risks. Apparently the results are the same for adults, and they now only do actual marrow transplants with children.
Thank you, ALL of you, for your continued prayers and support. It mean SO much. We are so grateful and feel so held in a big container of love.
p.s. I asked Tim, of course, if I could share all this and the pictures. He said “Sure, of course. This is my life now. This is me. I’ve never been much into social media, so why not now.”
p.p.s. The last picture is a surprise (partial…Tim knows it happening, just hasn’t seen it) … Evan showing solidarity with his dad. Makes my heart melt. And now both my men are bald and handsome!
(I did say I would too…hmmm..not so sure, now, lol! – I don’t want to take away any of my lioness mojo! It’s been coming in very handy!)
You are living your life, loving and appreciating more than you ever thought possible.
You are grateful, You are happy, You are content.
You drop so much of the fear, fully engaging in the moment and all life has to offer.
You start to anticipate with pleasure this new phase of life you are entering.
You are laughing and loving and living.
Then – the thing you’ve secretly dreaded happens.
The other shoe drops.
And all you can do …
Is pick it up, dust it off …
And hope and pray with all your might …
That it turns out to be a magic ruby slipper.
Sometimes you have to stop being afraid. Afraid of what other people will think, what other people will say. Life is for joy and risk and love and all-out-in-your-face enthusiasm. And letting go of fear is a huge step. Fear of loving, fear of laughing, fear of being authentic.
I’ve been afraid of posting this blog post for months…I wrote it last year during Laurie Foley’s class, Blog More/Stress Less. It’s a short little thing, and one of my first tries, but I wrote it with joy and giggles, and it’s all true.
So…fear of it being to personal, too intimate…who cares! I’ve been absolutely silly! And anyway, I think you will all think it’s lovely.
I’m dedicating this to my beautiful, strong-as-a-rock, rock-star husband! He is my perfect-for-me spouse that I intend to spend at least another 23 years with as his wife.
Let’s start somewhere in the middle of the original post…
Even so – we were both a little worried about what our life would be like as empty nesters this past fall…our son is such a huge part of our life and our joy.
I can tell you emphatically, it’s been fun, scary, surprising – and we see a delightful future.
One of our ‘delights’ has evolved over the last couple of months…We seem to have more time in the morning, and there is no one else in the house but us…so Tim frequently would ask if I wanted to shower with him. Well, of COURSE not! “Our shower is smaaalllll, I need to shave my leggggs, I like the water hottttter”…I would whine all the reasons this would not work.
But then one day I said ok. This was not about sex (shower is Waaaayyyy Too Smallllll)…this was about physically connecting.
Hmmmm….that was nice!
Maybe I would do that again. It did set a nice tone to the day, making a sweet connection, and having your back washed is quite a luxury!
Then I saw where it would really come in handy.
I was trying to entice my husband to exercise more to reduce his cholesterol. It was tough to get him going, but he was trying. One day he asked if I wanted to take a shower with him, and I got the brilliant idea to say ‘no exercise, no shower!’ He was ON the stairclimber. Ha Ha!!! The bait! I found the bait…
So now, many mornings of the week, he will be on his stair climber and I’ll be on the elliptical, and then we’ll take a shower and start our day. The surprise is that I’m the one who is running to the elliptical on the days he gets started early so that I’ll be finished in time to get in the shower with him! We raise our oxytocin levels, we laugh, sometimes talk business, sometimes it’s just a ‘quickie’ shower because of schedules…but a lovely start to the day…making a lovely connection stronger.
And besides, he gives great back…. 😉
“He can’t do it anymore.” My brother’s voice was tired. It had been quite a year, particularly the last 5 months.
“He aspirated again and asked me how he can stop this. I told him only he knew how. He decided no more eating or drinking. He’s off fluid and on comfort measures only.”
I remember in the beginning, when the Parkinson’s started to be really noticeable, right after my mother died. He had just spent the last year being the main care-giver for her as she was dying of colon cancer. He was the only one who would change her colostomy bag…even in the hospital for the last 3 months…he took that on – not the nurses. .
We brought him home with us after the funeral, and he stayed with us for about a month in North Carolina when I noticed his Parkinson’s was starting to show outward signs. My son was 4, and he would mimic Papa’s shaking hand as he walked along with him. My dad would get the biggest kick out of that. Yes…bless him, he would chuckle and love my son for it.
He moved on, married again – a woman from Tennessee where my brother lives. They were happy, and he seemed content.
We moved to California that year, and he came to visit several times over the years, once with his new wife. That was his last visit. It was just too much for his body anymore.
And we would go to Tennessee. His 75th birthday was great…a 4th of July baby, he was, and he made every effort to play on that all the years I’ve known him…including fireworks. My marine-turned-cop dad, born on the 4th of July.
As it got worse, he would call with stories of him falling, laughing at himself. I was always a bit stunned at his humor and self-deprecation around his weakening body. His faith in God was his rock…and even though I no longer agreed with his Catholic views, you had to be a little bit in awe of the strength it gave him…though in the end, I believe he was becoming more spiritual than Catholic.
My brother and his wife were his caretakers in so many ways – making sure he was taking the right medicine, taking him to the doctor (and hospital when necessary), and finally, doing all the work to get him into a decent nursing home when it became apparent he needed the full-time care…and they visited most every day.
I went to see him and spend some time in early December that year, wondering if it would be the last time I would see him. It was a fun, yet at times disturbing and heart-wrenching, visit.
And now…Comfort measures only.
As soon as I heard, I made arrangements to leave on the red-eye that night. My brother needed me and I needed him…and I needed to see my dad. By the time I got there in the morning, he couldn’t speak any more. I didn’t know whether it was a rapid progression of the Parkinson’s or it was his bone tiredness from fighting this illness so bravely and with such humor – and stubbornness – for about 17 years.
He talked to me with his eyes and his grunts.
At his grunting insistence, I made calls to family. He wanted to say goodbye. He grunted his love and heard his sister-in-law, my mother-in-law, my youngest brother (who was making arrangements in NY where the burial would be) tell him they loved him as I held the phone to his ear…and he grunted back. His eyes said it all.
This means drugs…no fluids. You basically dehydrate to death – which is legal – because we don’t believe in euthanasia in this country. And because he was allergic to morphine, they could not continue to give that to him even though they only expected him to live about 4 or 5 days.
It took 8 very long days.
If he had been on morphine, they could have sent him over the edge – legally. But it was darn near impossible with the pain medicine he was on. 8 days. Sores in his mouth, temples sunken, wearing a dry diaper. I would put a pillow between his bony knees to offer some comfort, and looked for blankets to keep him warm.
And we waited. He slipped into a coma (was it?) And he would not let go.
As stubborn as always, my dad.
He died on Valentine’s Day.
A valiant fight all those years. He waited until late, after my brother and I left.
My brother came to tell me “He’s gone.” I thought…who’s gone? The first attempt at protecting myself from the very reason I had come to Tennessee.
We took the very late-night drive back to the nursing home.
If my father had been in a line-up of dead bodies, I would not have recognized him. His spirit was gone. It is what made him who he was…
I knew he was elsewhere, sending love in his own way on that Valentine’s day. And I truly got he was ok now.
The 4th of July baby, kid, teenager, marine, husband, father, cop… being strong, showing us what loyalty and humor and grace and caring look like in real life.
And now reminding me, every Valentine’s day with the anniversary of his death (as only my dad would), what one face of real love looks like.
I woke up one day last week feeling horrible. I was aching in my hands, my feet, I could almost feel the skin across my rib cage throbbing with an achy inflammation, and my sacrum was in a knot.
Was it something I ate, was it ‘punishment’ for having recently talked about my body feeling so much better? Was it because I bragged that I would occasionally have a night without good sleep rather than occasionally having a night with good sleep?
As I sat with my morning tea, I thought “I should listen…do my soul work.” But I didn’t really feel like it. In fact, I hadn’t done it for a few days because…well…when things are going great, I don’t feel a great desire to dig deep…or listen to my soul…or to even be quiet enough to find out if things are o.k. Why bother? Everything’s good!
Until it’s not.
For so much of my life, I’ve ignored my body. I have ignored pain and discomfort, but most importantly, I ignored being tired, fatigue…exhaustion. Always pushing through…always getting the next thing done…always being ‘busy.’
Then, a funny thing happened when I entered empty-nest.
I could no longer ignore my body. It was going to have its say.
First, I injured my knee. All my plans to do so many things with my son before he went to college went right out the window. All I could do was ‘be.’ A beautiful gift, in retrospect, to be with him instead of all that doing. While healing from that, back pain showed up, then reflux. Then exhaustion, loss of libido, feeling sadness and grief about entering empty nest – actually trying to reject those feelings because they seemed so wrong when I was so excited for my son. Quality of sleep? None.
Then I started doing the work of Mind/Body Coach training. I’ve believed in the mind/body connection for years, and I was excited to learn the tools to link my mind, body, and soul so they would communicate. What happened first was ‘the mess,’ as our mentor and teacher, Abigail Steidley, calls it. As we students started getting familiar with our bodies and listening to our inner wisdom, all hell broke loose for all of us. For me? Pain – getting worse, not better! Losing my voice. Colds. Crying, what seemed like ALL.THE.TIME.
Then slowly, while learning and using the tools and understanding the Mind/Body process, the fog and the pain and the sadness/grief started to lift. I kept exercising, got massages, a new mattress, started paying close attention to my intuition around food, fun, pleasure. I started resting more…feeling my feelings more…playing more.
Relief! It was delicious to honor my intuition and my soul messages, living in a more grounded and effortless way. Life was good. Sleeping…no exhaustion…no pain. And this work and it’s results reverberate throughout every aspect of your life. It was a keeper.
So I knew I needed to check in. What the heck was going on?
This is what I heard…
Rest. Delicious, real food. No protein shakes. Gather evidence (tracking what happens when I follow my inner guidance). Passion, Fun, Love. Exercise.
Of course. When I listen, my inner wisdom is consistent, with a few surprises thrown in, here and there.
So…Do I have to?
I may not ‘feel like’ doing this work some days, and that’s ok. But as a consistent part of my life, my choice is clear for me. I listen and follow my inner wisdom and stay strong, stay rested, stay nourished, maintain healthy blood sugar levels, and follow my bliss.
It doesn’t get better than that.