These heartbreaking words were mournfully uttered by Adahlia, this morning, after she spit out her broth on her clothes and, sighing, I had to go find her a change of clothes before I could take her to “camp.” (Its really just her preschool, and there’s not much difference between playing at “school” and playing at “camp,” and that’s fine with me. It’s just about childcare at this point, so that we can make ends meet.)
Honestly, this mama is tired.
And I agree with Adahia whole-heartedly.
Unfortunately, I have no good news to report. She only went 3.5 weeks between transfusions. Her hemaglobin dropped rapidly in the last 6 days, from 9.1 to 7.2. (That’s rapid.) We didn’t get home from the hospital yesterday until 8 pm. The transfusion took so long because she’s begun making antibodies to donated blood. This is not good news. The only consolation here is that there are over 20 antibody types — so while, yes, it will get trickier and trickier to find safe blood for her, there’s not yet “a need to panic.”
Great.
She hasn’t been taking her Chinese herbs — she stopped a few weeks ago as she started complaining of belly pain and even vomiting after taking them. Plus, ever since her birthday on July 3rd, we’ve been “cheating” on her diet, giving her gluten-free this or that, or other treats. Is any of this connected to her “burning through” her blood?
I don’t know.
Honestly, this sucks. I’m trying super, super hard to remain positive but I’m pretty low. And I appreciate this blog, and the readers, and hope you don’t feel I’m dumping on you. It does me a world of good to be able to convey what weighs on my heart. I hope it doesn’t affect your day negatively; that is certainly not my intention.
In many ways, Adahlia is incredibly healthy. And I would have NEVER guessed how low she was in blood based on how she both looks and acts. So I know that all the support we’ve been doing for her system has helped…
… I just agree with her. I want it to be easier. I would love to be able to feed her breakfast, without nagging at her to drink her vegetable juice or broth. I would love to just give her the food she likes. I would love to not give her medicine every day, multiple times per day. I would love to not feel bad about not giving her medicine or missing a dose.
People aren’t supposed to live like this, honestly. Every day shouldn’t be full of the pressure of what must be done because we are trying to save her life and crossing our fingers that something will work. That’s kind of what it comes down to.
I am tempted to give it all up. To just pretend like I know nothing, and to just eat whatever we want. To stop doing herbal medicines and drinking broth and juicing fresh vegetables.
Like Adahlia, I just want us to be happy. I want it better. Its been so hard.
But I also know myself, and I know that there is little chance I’ll give up.
We are considering steroids again. And, honestly, I’m not sure if I can do that. Its so much to ask of me… when it comes to medicine and motherhood, in a way, ignorance is bliss. And considering how I’m knowledgeable about how steroids burn out the adrenals and cause adrenal insufficiency, can cause diabetes and all sorts of hormonal/endocrine problems… and joint problems, and bone problems… yes, even in children… and they taste nasty, fellow DBA moms have stories of their children literally spitting it back it their face… so again, it would be yet another nasty medicine I’m forcing on her… and stories of moms who say that their child goes into rages after every dose of steroids… that they must endure 2 hours of hitting, hair-pulling, and screaming….
At least, with the Chinese medicine, yes, it doesn’t taste good, but I have known it only to be helping. Not hurting. (Up until this last formula anyway. We are baffled as to why she vomited it back up.) With steroids, I would know I am poisoning her. That I am destroying her deepest energy reserves. Even if it does “work” and help her make blood.
And the idea of doing that to her just rips me apart inside. God, it just sucks.
But honestly, we don’t have time to dwell on it sucking, either. I gotta leave for training for my new job. I am grateful for it, even though I certainly never imagined myself doing it.
What is it? Bartending. Something I did about 8 years ago, and I was overqualified for it back then. But that’s okay. The owner and manager are nice, and the atmosphere is friendly and open. Its a Tibetan fusion restaurant, so the place is all mandalas and fresh herbs and wood carvings and even a real prayer wheel. Its a brand-new restaurant.
Honestly, I am looking forward to it. Working in medicine gets so HEAVY. And my family has enough heavy. I live it daily; I can’t escape it. And the funny thing is, people deeply appreciate the healing work I do; they are amazed by it; they value it. After providing a treatment to someone, the atmosphere is different. Lighter. Opened. Expansive.
But healing often challenges people to give up things they don’t want to give up. To change in uncomfortable ways. And its tough. People aren’t sure they can go through the dark to get to the light. (Heck, sometimes, I’m not even sure I can.)
People kind of just want it to be better, now. And many don’t understand that reiki and acupuncture have the ability to indeed make it better, right now, and immediately. But they do know that a stiff drink will make them feel better.
People just want to be happy.
And cocktails are fun and festive. Even glamorous.
And I get it; I really do.
My schedule is now even more daunting … somehow, I’ll be making three meals per day plus snacks for the three of us comprised only of whole foods and no grains or starches, and simmering broths and grinding juices, and preparing up to four medicines for Adahlia per day, and bartending three nights a week plus one day shift, and offering acupuncture and health services at least two days a week and doing my writing and integrative advocacy work, as well as all the other chores that come from running a household.
It’s a lot. But the situation demands it. These past two years, we’ve been earning just enough to be slowly back-sliding. We need a big change in income if we are going to keep eating this way, purchasing medicines and supplements, or I am ever going to open a clinic that operates at its own location (i.e., it has its own full-time address, and is not a dedicated space out of my home or operated part-time at someone else’s place). This new routine will be exhausting, but it offers the potential for change. And it might also be fun.
May we all feel good, truly good, about who we are, and where we are, right now.
Lov,e.