I started writing this from the bathtub, yesterday (Tuesday), as i filled it with hot water. I turned it off twice because in its tumbling roar, I thought I heard her crying for me. It was the first solo bath I’d taken in awhile. It was one of the worst days I’d had in awhile.
Adahlia was not doing well yesterday. Her blood levels are to be checked tomorrow (Thursday, or today, depending on when you read this), and she will likely need a transfusion. Typically, this means she is extra sensitive, extra clingy, extra capricious, extra easily frustrated, extra demanding, extra everything. The past few days she has been all the above.
I usually remember that it’s because she’s low on blood and feels awful, and so I carry her constantly, feed her small amounts often, console her, do whatever she wants, and meet her every need. But when I am having a tough time too, like yesterday, and then I run low on patience with her, I feel awful.
To be truthful, it’s not that I was frustrated with her. I was upset with our situation. Frustrated and angry and feeling impotent, looking at her pale little feet, an enthusiastic smile flashing from a drained face and fading away again. So angry that she’s not better yet – angry at myself, frustrated with natural medicine and the last four years of my education. Upset, wondering why the energy work I do with her – reiki – hasn’t healed her. And when she was too tired to smile for the neighbor who said: “Transfusion in 2 days? Well, she looks great! She looks healthy!” I was infuriated– not with Adahlia, of course, but with the fact that she appears fine to most people. (Trust me, if we didn’t need to do these transfusions, we wouldn’t be!)
Angry, thinking of how we’d like to move forward and begin really building our life, but we are still recovering and needing to support each other as we come out of a health crisis that nearly wiped us out in every way. Sometimes, I just get so angry.
I need to remember that we are building our life. By supporting each other and caring for each other in this most important way at this most critical time, we are affirming what is most important to us in our lives. And that’s not a job. Or a passion. Or keeping up with societal claims. Or really, any pursuit or obligation that we tell ourselves is important. It’s dropping all those distractions to care for the people you love when they need you. That is the root that needs nourished. What of worth can be built if that foundation is not strong? If the people you love do not realize they are always and forever first and foremost, and that they will not be passed off to a hired or other caregiver so that you can do something else?
No, this is how it needed to be. I am glad I did not give in to pressures to do it any other way. I started to — I allowed my mom to care for her for five days in September while I attended my doctoral conference. And I will never forget how she looked at me, on the fourth day, as my mom drove away with her after bringing her to visit me on my lunch hour. She was only 2.5 months old at the time. It was about a week after her second transfusion. I saw her for an hour every day over lunch and spent every night with her (we cosleep – I love it) but I was away from her from 7:30-12 and 1-6 for five days straight. And on day four, after I breastfed her and as I buckled her into her seat, she looked at me. Her eyes expressed confusion and no judgment, but a clear question: Why aren’t you coming with me?
It was the first and last of a monthly doctoral seminar program for me. If she was healthy, I think I would have stayed with it. I’m not sure; Ill never know. I wanted to continue with it. But I had to leave it. It simply was not the most important thing.
Anyway.
Its annoying that I still can get sucked into such emotional whirlpools, like I did yesterday. Because it doesn’t help. It actually makes it much worse, because I’m so busy stuffing down or dismissing furious and desperate thoughts that I can’t play with her in a fully present way. And thats when she needs me to be most present, when shes low on blood and feeling poorly. And surely she can sense it, and it sets her further on edge. And it doesn’t help Joe, either. Anger is simply a waste of time and energy.
She does worse, I do worse. I get upset about her situation and do worse, she does worse. We are each others cause and effect.
I was glad to find myself, this morning, in a clearer space, ready to play and take care of her today, ready to enjoy her. After all, I just never know. Her presence in our lives is something that can be taken away at any moment.
And amazingly, today, she did really well. She looks pretty good, all things considered. It was a remarkable day for being 4 weeks post-transfusion. I’m honestly not sure what her labs will be.
And so enough meandering; let me give you the facts as they stand:
Tomorrow am we will have her blood drawn and they will test it as they always do. If she needs blood, they will give her a transfusion.
She has been taking the Chinese herbal formula extremely willingly for the last week or so. It’s extraordinarily interesting. She fought against it so much at first, but we kept it up, 1-1.5 g 3xday since June 10th. And she takes the dropper from us and sucks it down herself now. Waits for and wants more. It’s remarkable. Perhaps also explicable, according to Chinese medicine theory, but I won’t bore you with the potential whys of that, here.
We haven’t done the chlorophyll at all since the 10th, or the cherry concentrate regularly, because we were struggling so much to give her the Chinese herbs and well, there’s only so much we feel right about giving her.
Up to twice daily, but usually once, I’ve also rubbed peppermint essential oil into the bottom of her feet and a few pertinent acu points. A study of mice with destroyed RBC stem cells found a statistically signifant number of mice treated with peppermint oil made new RBC stem cells and recovered. All the others who did not receive peppermint oil died. Now, Adahlia is not taking it internally and the dose rubbed into her skin is small, but I feel most comfortable starting out small, and again, she’s already taking the Chinese herbs internally. So it’s just a little something we are trying.
I’ve also been doing daily moxa and shonishin up until 3 days ago, though, and I feel its helped her be her best self this month. It’s definitely helped her energy, mood, and skin.
It will be interesting to see what her numbers say. She is not doing her worst, not quite as bad as I’d expect her to be at this point, but she is also not at her best. No, it’s pretty clear she needs blood.
As I laid down with her tonight to put to to sleep, I told her we’d be going to the hospital tomorrow. I told her about the needles sticks, how they’d have to test her blood, and how if she needs it, they will use it to find a match for her, and then the tube will feed her “red” through her arm again. And that it will hurt, but we will be there with her through it, and it will feel weird, but that she’ll feel so much better, she’ll have more energy to think and play.
She fell asleep listening to me.
Though they seem old hat at this point, every blood transfusion is risky. Please hold her in light and love in case she needs a transfusion tomorrow. Please join me in filling the hospital staff with joy and light and confidence, so that the procedures all go as smoothly and safely and comfortably as possible.
I will leave you with some lyrics that I remembered this morning. It helped me – you will see why. The song is absolutely haunting and beautiful. If you wish to be moved, to feel chills, listen to it. (I will not tell you the artist so as to make it a fun surprise. You would never guess, and would most likely be shocked by most of this band’s other songs. It only goes to show the power of art as a mouthpiece for what is beyond all classification and preconceived notion.)
Peace. Love. Blessings to all who read these pages.
“Green Valley”
“Hello stranger,
Can you tell us where you’ve been?
More importantly,
How ever did you come to be here?
Though a stranger,
You can rest here for a while.
But save your energy,
Your journey here is far from over.
Come the sunrise,
We’ll descend through Judgement Valley
And weigh your worth
Before her majesty, the Verde River.
No direction but to follow what you know,
No direction but a faith in her decision,
No direction but to never fight her flow,
No direction but to trust the final destination.
You’re a stranger til she whispers you can stay.
You’re a stranger til she whispers that your journey’s over.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
No direction but to follow what you know,
No direction but a faith in her decision,
No direction but to never fight her flow,
No direction but to trust the final destination.
You’re a stranger til she whispers you can stay.
You’re a stranger til she whispers that your journey’s over.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.”