There’s so much I could say on what’s happened in our lives since our last post, I scarcely know where to begin.
First, perhaps, the fact that we no longer live in Portland, or Oregon, for that matter. We moved to Colorado in early August, due to a fortuitous job offer that Joe received (from his old company, actually. They said they realized they made a mistake in letting him go, and that they needed him, that their other location in Colorado was struggling — would he come back to them and fix it and manage it, if they gave him a significant raise and a promotion?)
Like with so many things for our family during the last couple of years, it was miraculous timing. A last minute thing. A retrieval from the frying pan.
Unlike the first year or so of Adahlia’s birth, I have become better at letting things happen. Joe had received a temporary job that allowed us to remain in Portland last January, but things were looking dire for us again this past spring. No one knew. If they did, they would have been baffled that I wasn’t freaking out. But I had reached a point where I no longer cared what would happen. After all we had gone through, I had finally had enough. I had no more struggle within me, no desire to try to keep fighting the tide.
Or perhaps that’s not exactly the right way to say it. I knew, that what would happen, would be what must happen. And I accepted it, no matter how ugly it might look, or no matter how much I wanted something else, some ideal, instead. I brought myself to the table, following my heart/gut even when it seemed stupid, refusing to accept judgments on it, and let the world unfold the rest.
I trusted. Not even necessarily that things would work out – that we’d all be together, or that we’d have a nice life, or whatever. I let go of all my designs.
I know I’ve said this before, but if I sketched out all the things for you, if I told you all the lines drawn for me, creating a path simultaneously twisted and clear, so that all that was asked of me was to bring myself fully, you would be amazed. You would call me lucky.
Even after all I’ve been through, you would probably call me lucky.
And I would say its offered to you too. In boon times and in drought, it is still there. Sometimes, it’s just easier to see (or sense) than others.
We are material creatures, and so material examples are sometimes easiest. So let me say that Joe received this very unexpected but incredibly fortuitous offer, and moved out to Colorado in late June. Because of her blood transfusion schedule, we had one week in which Adahlia could fly to Colorado with me to visit Joe, to see how she would handle the altitude, and for us to look for a place to live. This town in Colorado, where we live, is a very hot market, and rent for a modest house in a neighborhood that would feel like home to me, would be a third more expensive than the mortgage would be for it. Yet, houses sell the day the are on the market — many never even make it to the market, and are sold through deals cut through brokers in the know. Homes for rent go similarly fast, but at higher price tags. This is partly a result of the flood last year, and partly because of the location and economy. All housing is at a premium. And we had a week to figure something out.
Or possibly keep our family separated for a longer time.
Yet, strange event after event happened, and one house remained on the market when it should have come off — twice. A house exactly within our budget. Long enough for us to see it. Long enough to make an offer we felt comfortable with. An offer below asking price — but accepted over another party’s offer, and then another’s, which was $15k more than ours. Obstacles arose, and then fell. I’m not saying Joe and I didn’t do our part — we did. Gathering paperwork, mountains of paperwork, what with Joe having lost his job when Adahlia was so little, and being out of work for a year. Yet, 30 days later, we closed on a house. Its beyond phenomenal — if I weren’t sitting here, typing it, I would say it is unbelievable. Moreover, it is a house that, when we visited, Adahlia rolled around on the floor of, clearly making herself happily at home, and when I questioned her, she said it was where she said she wanted to live.
On a soul level, in a way, I know Adahlia chose this house. Or it chose her. Or us. Or it was part of the meant-to-be. Either way, we live here now. And its perfect for us, for right now.
That is only one example.
So much has happened, and in a way, so little.
Adahlia turned 2. 🙂 Now that is a big deal! It was a wonderful little celebration. There’s a lot I could say about her adorableness and growth, but I will save that for another post. I will only say that she is an absolutely fantastic little person, in every way. And she loves her father so much. When we got off the airplane, my heart melted to see her how she greeted her dad after not seeing him for 3 weeks: smooshing his face in her hands, petting his hair, gazing into his eyes, cradling his chin, pulling him close, giggling, eyes shining, not letting go of his arm, his neck, and continually petting him, touching his face. Beautiful.
Adahlia received a blood transfusion this past Monday, September 29th. I’ve lost track — I’ll look up how many she’s had so far before we receive the next one. It’s been her second in Colorado. After her last transfusion in Portland — everything down to the wire (she received a blood transfusion Tuesday, then I had another stent replacement surgery for my kidney Friday, and then Monday I was directing movers to pack up our storage unit and my acupuncture office, and then Tuesday they packed up our NoPo apartment, and we were on a plane to Colorado that evening, and closing on our house 5 days later) — well, it was only 3 weeks until her hemaglobin was again so low that it warranted transfusion.
Three weeks between transfusions. I know there are families out there that regularly go only 2 or 3 weeks between transfusions, and honestly, I don’t know how they handle it.
After her first transfusion here in Colorado, for the first time ever, Adahlia pointed to her inner arm, where she gets the blood transfusion IV, and told me she didn’t want to have anymore of them.
“Your blood transfusion?” I asked, as she pointed to her inner elbow.
She nodded yes and put the tips of her index finger together, the sign for ‘hurt’.
“It hurt? I know. I’m so sorry.”
She held up her hands in the “all done” pose.
“You’re all done with blood transfusions?”
She nodded yes.
“Oh lovey,” I sighed. “I hope so. That would be wonderful.”
And for awhile, it looked like, maybe, just maybe, it might be true.
At 3.5 weeks, we did a finger-poke test of her hemaglobin and it was 10.4 10.4!!! When the nurse said it, I had to have her repeat it. I couldn’t believe it. I have never, ever had anyone tell me that her hemoglobin was in the double digits. It was so miraculous, I started to laugh. We celebrated that night with cupcakes … Adahlia was so excited. She picked out 3 cupcakes herself, and we shared them after dinner. (Afterwards, I regretted it a bit, because the sugar made Adahlia insane. We won’t be repeating it!)
The next week, at 4.5 weeks, it was 9.6. I was still happy, though aware of the downward trend.
Then, at 5 weeks and 5 days, Adahlia’s hemaglobin dropped 2 whole points, to 7.6.
Now, realizing that there is a margin of error to these tests, it can still be observed that she was holding steady for awhile, and then she dropped drastically in about a week’s time.
What were we doing different than we were doing when she only went 3 weeks?
Well, after her last transfusion (the 3 week transfusion), we began her on a mega-dose of folate. She was already taking 400 mcg. At her hematologist’s recommendation, I bumped it up to 1 mg (though she actually is taking closer to 1.2 mg), or three times the amount.
I also decided to get serious about her medicines. With the chaos of the summer, and extraordinary chaos of moving, I had stopped giving her all the medicines exactly as indicated. I would skip a dose here or there. After she only went three weeks, I decided that I needed to go all-out or not-at-all, or in other words, that I needed to get serious about her health regimen or drop it. So I gave it one last go.
It’s an exhausting regimen, I admit. I would be glad to be done with it. But I forced us to do it, and she did so well those first few weeks, that I became a believer in them. And then I got curious. I wondered: Is she doing well simply because of the folate? (It acts as an impetus to the bone marrow to increase RBC production.) So that last week, after she tested at 9.6 Hb, I dropped her homeopathic spagyrics and the chinese medicine and most of the other nutritional supplements…
And she plummeted.
It was just a trial, and no conclusions can be drawn simply from it by itself. But I think it points to a synergistic effect of the medicines. My theory is that the homeopathic spagyrics and chinese medicine are still needed to clear out a deep-seated, subclinical infection of the intracellular matrix, and that the folate and other medicines (mostly antioxidants) help the bone-marrow recover. They work together, on opposite ends of the spectrum.
Of course, it also cannot be denied that she is under much less stress now than she was when we were moving (when she only went 3 weeks between transfusions).
So you can see what I say when I say: A lot has changed. And yet, a lot remains the same.
Additionally, I applied my “this is it — let’s get serious” medicinal approach to my own health and kidneys. Along with Adahlia, I forced myself to stick to my many-pill, many-therapy regimen… even though there were many other demands on my time and a billion excuses I could have made as to why I had to skip a dose of one or another.
And I must say that at this moment I have no pain — that’s NONE — in either kidney.
Have you ever had a deep-seated pain?
Have you had it for two years?
Have doctors ever tried to tell you that they cannot find a source for the pain?
Let me say, that it is such a relief to not feel pain in my kidneys! To be able to breathe into them without feeling fire and sandpaper and needlepoints and constriction.
And its been about 3 days without notable pain.
After two years, my friends, it feels wonderful. Its amazing. Its really, inexpressible.
I’ve learned so much during this journey, and I know that neither Adahlia nor I are “out-of-the-woods” yet.
I know we have a ways to go.
But we have ridden a heck of a roller coaster, and have found the value of things intangible, but of the only real value.
Over and over. Loop after loop! Deeper and deeper we go.
The strange unfolding of our lives makes it clear to me that I am not in charge.
And neither is anyone else.
If I had listened to so many well-intended others, ever since I became pregnant to this day, I can say, with the certainty of someone who cannot be disproven nor proven, that neither Adahlia, nor I, would be as healthy as we are right now.
The moral is a paradox, as all truths are.
You must listen to everything and no one.
Listen to your inner self. Do what feels right. Remain true to your heart and gut, letting that be your guide. If you do not know what it feels like to follow that call, practice in small ways, or small decisions, until you do. You should only be afraid of choosing something not in keeping with your soul integrity — never of following it, even if it makes you the black sheep amongst white. When we are stripped, it is the only thing we will truly have.
And then, surrender your sovereignty, but surrender it only to God.
I am so thankful for all we’ve come through, so grateful, and even more grateful because I don’t care if we have to give it all up tomorrow.
We are here.
And when it comes to states, it’s a good place to be.