These last couple of days have been rough.
We’ve had a few glorious ones — slow walks to and from the nearby coffee shop, bicycle rides with her in a seat on the handlebars to the grocery store and to a picnic in a park, hours spent tending the flowers erupting from the bulbs we planted last fall (“Keep their coats on so they don’t get cold when the snow comes!” I said, referring to the papery, onion-skin-like sheath protecting them, as Adahlia placed them in the holes I dug.) This week, we placed river rocks into a path that wove through the flower bed, so that the utility man doesn’t step on our fragile green friends. We have more flowers than I can count — tulips and hyacinths and things I don’t know the names of… fragile little treasures coming up from our side yard, promising color and beauty and life.
But, my friend, right now I am exhausted. I am struggling with insomnia. I alternate between a few different acupuncture and homeopathic remedies to try to get my mind and energy to calm down so I can sleep. Adahlia must have woken me five or six times last night… in an infant, okay. It is to be expected. But now? At nearly 3 years? Friends, I have had only one night — yes, that is 1 night — of unbroken sleep since she was born. And actually, it is longer than that, since I was not sleeping through the night when I was pregnant. I have been sleep deprived for years. How can I expect my body to heal such a deep-level issue (autoimmune and nephritis) if I am woken every 45 minutes, and cannot fall back asleep when I am woken until hours later after one of those times? Sometimes, it actually makes me angry at her when she wakes up and then wakes me up. Last night was one of those nights.
Adahlia will be four weeks post-transfusion on this coming Tuesday, and she has a terrific head-cold that is just now resolving. She is needy and sweet and it breaks my heart… asking “Mama hold you?” in the night. Touching me gently and saying, “Mama love you” and nodding after she’s done something to make me close my eyes in an attempt to take a moment to gain perspective and refocus.
My surgery to repair my kidney issue is in five weeks. I am so so so exhausted. There are not words to express it. I am exhausted. I am trying to do acupuncture on myself every day to build up my energy so that the surgery will hold, so that it will not fail, because this is my last chance to keep my kidney. If this surgery fails, the surgeons will schedule another surgery to remove it. I need to take care of myself. I need to do absolutely everything I can to try to save my kidney. Adahlia takes everything I can give her and wants more. And don’t get me wrong: I want to be everything she needs. I want to be the mother I know I can be: playful, encouraging, reflective, kind, and strong. But I’m exhausted. My friends, I am so exhausted. I just need a little bit of space, just a little, to try to rest, to take care of myself, but she is approaching transfusion, and somehow, though I cannot imagine how it could be possible, I know she will only get more demanding, more needy, and throw more fits, as she enters her own state of exhaustion and pain due to having a low red cell count.
There is still hope. I am treating her from a different perspective in shonishin/meridian therapy, and I believe it is the correct one for her. I believe I have finally found the underlying pattern to her blood disorder, the right approach to child acupressure to treat it, but it may take months before we see results. There are days and situations in which she is doing better than she has been — less irritable, less demanding, less quick to anger and tears. But the last two days have been extraordinarily taxing. And extraordinarily demoralizing.
If you have a moment, send a little love and light this way. I need to get better. I need her to get better. We must find a way through this disorder – we must find the key to her health. We cannot keep living this way.
On March 24, Adahlia will be sedated for an MRI procedure to check the deposits of iron in her heart, pancreas, and liver. She is scheduled for a blood transfusion on the same day. 10 days seems like such a long time away — how will we all survive the next 10 days, if the last two have been any indication of what we can expect? And any procedure involving sedation has risks, including the risk of things going unexpectedly wrong, and it just makes my heart break all over again to put her through it. To watch them put her to sleep.
God, this whole stupid disorder just breaks my heart, and makes me want to smash things, throw things, scream and destroy. Its just so hard. It doesn’t make sense. It seems so unfair. Its incredibly tragic and taxing and emotionally draining.
Biomedicine continues to offer very little — Adahlia is negative for HHV-6, and as strange as it sounds to have been hopeful that your child has a viral infection, I was indeed, for such an infection is curable with antivirals. There remains no satisfying explanation for why her bone marrow can, but isn’t, producing enough red blood cells for survival. There are symptoms that don’t make sense, and complications that don’t make sense, and treatments that don’t make sense, and case studies of remissions that don’t make sense. Biomedicine saves her life roughly every month with a blood transfusion. But it offers nothing that is satisfying.
And yet, there is hope. There are natural and acupuncture modalities and methods that do make sense, and theoretically should help. There are case studies and reports and techniques to improve vitality, restore homeostasis and functionality, and aid the body in repairing itself. I am doing everything I can. Its not everything I could do, though. And its not enough.
Adahlia just cried out a pitiful “nooooo!” in her sleep. She is having a nightmare, and I need to go to her. And then I need to go into the other room and do some acupuncture on myself. And then I need to sleep, because I am exhausted.
And because we have another big day tomorrow. An impressive slew of various supplements and medicines and interventions, one of which, or the combination of which, I am hopeful will help her. Because I am determined to help her. Because it will kill me if I don’t help her, so I might as well nearly kill myself trying to help her.
And because she will want to see her flowers, green stalks and leaves pushing out of the earth, which she touches carefully with just one finger, so that she doesn’t hurt them.