In the nick of time

When you start living your life from a place where you accept that everything is happening as it must, because of how it is, whether or not it is “good” or “bad,” you start realizing that everything is therefore also happening as it should, and, therefore, that you are always just in time for everything.

This isn’t a new concept to me, and probably not to many of the folks who read this blog.  But it is a challenging concept to embody and live from, if your life isn’t necessarily what you would like it to be.

It challenges you to accept.  In accepting the people and events around you (those things you cannot change), and accepting that they must be that way for a reason, and it is likely for everyone’s highest good, it empowers you to feel grateful.  It can help create a stabilizing, peaceful place within you, even if a storm rages outside.

If everything is happening as it must and should, based on factors and patterns that you may or may not be conscious of, then you are also happening exactly as you should.  You are always exactly where you need to be given where you are at. Isn’t that comforting?

Now, if you don’t like where you’re at, it doesn’t mean you are stuck.  It simply means you’re someplace not particularly pleasant.  And sometimes, it is possible to create change by merely bringing your consciousness to where you’re at.  By facing and accepting unpleasantness, even the things that may not be pretty or flattering, by bringing your consciousness, by saying “yes, this exists, even if it is not the full picture, it does exist,” you create room for things to shift.  The storm doesn’t need to blow at you anymore — it has your attention.  Perhaps, now, it can blow over.

Its not easy.  If life is flowing through cycles, then most of life follows a pattern.  Most human patterns are, in the end, habits.  And habits are comfortable.   It requires great presence of mind and strength to break a habit or pattern and create a new path within oneself.  Add other folks into the mix, say, you want to break a habit or pattern in a relationship, and well, that’s a different and much tougher subject altogether!

But the point of this entry is to say that our family has experienced several “in the nick of time” moments recently.  Joe got a job a few days before Christmas, allowing us to stay in Portland where I can access to the best medical care for Adahlia, and hopefully, a cure.  We found an apartment we could afford just when we had no money left, and barely the ability to put the deposit down on it.  We got a gift of money to pay for the herbal treatment for Adahlia just when I was having to decide what to do about it, since we couldn’t afford it.  I was alerted that my kidney was severely swollen and received emergency surgery the day before Adahlia’s transfusion.  Adahlia’s transfusion was luckily, miraculously, the day before the snow began to fall, and when it fell it fell so much that it took Joe nearly four hours to get home from what is typically a 30 minute commute.  We were safe and warm, having just come in from playing in Adahlia’s first magical experience of swirling snow, when Joe finally left the parking lot that used to be a freeway (I405) and took his truck up Cornell Road, watching as cars slid left and right as they tried to climb the hill he also needed to get over if he wanted to get home.  After watching for awhile, he and two other trucks in 4 wheel drive roared slalom through the abandoned and stuck cars with tires spinning, and as he looked behind him in his rear-view, the passage bottle-necked, and no more trucks were able to get through the pass.

And on a little level, it applies, too.  Because of Adahlia’s transfusion happening right before the snow, she was able to play in the snow happily, and warm, with cheeks flushed.  I had began a chicken soup stock the morning the snow began to fall, Thursday, and made chicken soup yesterday, and as the snow’s been falling since, we can’t really leave the house, but that’s okay because we just got stocked up on firewood and food… and Adahlia loves chicken soup.

And if I hadn’t obtained emergency surgery to save my kidney, I wouldn’t be able to pack up for our big move in a couple weeks.  If it weren’t quite so emergent, the doctors wouldn’t have moved so fast and I probably would have started to decline pretty rapidly in a matter of days or weeks, possibly making us miss our move altogether, even though we’ve already given 30-days notice on our house.

Adahlia was transfused at a Hb of 7.3 at 4 weeks, which is about on par for her recent pattern.  She was 8.7 last week, so it fell pretty fast this final week.  But the good news is that the Exjade (iron chelator) is working.  Her ferretin has dropped from over 850 to the mid-600s, in just one month.  The doctors were not expecting it to work quite so efficiently — they were thinking that it might just help her iron levels stay stable at 850 and not get any worse.  (Organ failure becomes a risk around 1,000).  But it worked very, very well!  Hooray!

Again, I attribute this to her state of relative good health, all things considered.  Perhaps the chinese herbs are working synergistically with the Exjade to help her body clear the iron.  (I started Adahlia back on the chinese herbs about 1 week after her last transfusion, and she’s been on a hiatus from the homeopathics since that time, too.)

My hope is that after another month, Adahlia’s iron levels will be in the 300s or 400s.  If so, we may do another month, or I may ask to take her off it for awhile and see how long we can go before it rises up again.  You see, the dangerous side effects of Exjade (loss of hearing and vision) become more possible when there is less iron in the system.  And Exjade is actually not approved for children under 2 years — its never been tested on them.  So, I don’t want to run her down to normal (which is under 100).  And I’d love to give her a break from it, as it does clearly upset her digestive system.

Adahlia’s transfusion went really well – one poke, and the IV was in.  She barely cried.  She is, quite simply, the toughest, most observant, and beautiful little 19 month old I’ve ever seen.  She watched the technician and nurses the entire time they worked on her.  When the doctor felt her belly, he commented on how he could tell she was “paying attention” and indeed she was — her eyes were clearly internal, paying attention to what he was feeling in her.  Like before, we went down to the first floor of the hospital to listen to the piano while we waited for the Red Cross to bring her blood, and Adahlia danced.  We were there at 0830 and we left at 3 or 3:30 pm.  It was the smoothest and quickest transfusion we’d ever had — no small thanks to the amazing nurses, and to my friend who came to help me, since it was the day after my surgery, and I had pain coming in waves.

But we were present for her, and it was — for a transfusion — absolutely great.

Fun facts:  Adahlia enjoys creating correlations between things.  I started this with her when she was very young, and now she does it on her own.  She will bring me a book with a picture of a cat, and make the sign for cat, and I will say “cat,” and then she will go to her stuffed animals and bring me her stuffed cat, and I will say, “yes, cat!” and she will make the sign again and point again to the book.

For the last few months, when we go to the hospital, I get her a temporary tattoo from the nurses station.  I always put it on her left hand, since her IV is usually on her right hand.  The first month, back in November, I gave her a ladybug.  In December, it was a butterfly.  In January, it was a frog.  This time, it was a red dinosaur.

Adahlia has a stuffed, blue, long-necked dinosaur, a brontosaurus, I believe, which I gave her after her first extended hospital stay at 6 weeks old, when this whole blood disorder drama exploded.  His name is “Hut-Hut,” which is the phrase she often said at the time.  This time, I did not give her the tattoo at the hospital; I put it on her hand the day after her transfusion at home.  I then brought her “hut-hut” and showed her how they were the same.  At odd moments throughout the rest of the day, she would point at her hand with the tattoo.  When I would say “dinosaur,” she would then point at Hut-Hut.

To this day, when we read a book and there is an illustration of a ladybug, or when she flips over one of her alphabet blocks with the line drawing of a ladybug, she will point at her left hand and squeak, saying, “eh-eh!”  It blows my mind.  That ladybug tattoo was on her left hand for all of 24-36 hours, and it was months ago, but she remembers it.

Adahlia’s most favorite activity these days is to spin in circles.  She is like a little Sufi, twirling around and around in ecstasy.  She tucks her chin slightly, her head canted downward as if to give her momentum.  Then she pivots, sliding her feet and laughing until she falls over.  I twirl with her, and we spin around and around together until we collapse to the floor..

She also still does “Fast Feet!” — which is something we began with her back when she still couldn’t even roll over.  As a very small infant, she would kick her legs super fast, sliding them back and forth on the or carseat or in the swing or on the bed, and I would say:  “Fast feet! Fast feet!  Fast feet! …” super fast with her until she stopped or I ran out of breath.  She does this now while standing – stomping her feet on the ground while holding onto my leg and grinning – or while seated, sliding her legs on the floor.  And I still chant: “Fast feet!  Fast feet!” until my words are garbled and we are both laughing.

The snow outside still falls.  It is so beautiful and we are all safe and warm. We had all our necessary, life-sustaining medical procedures just in time for the worst snowfall to hit Portland since at least 2008.  The winds swirl and we turn and turn and turn with them, and mark the passage of time by staying still.