“You are free to smile in the midst of massive tests and challenges, knowing that you have chosen to play this game, and that you have dominion over all the appearances of earth.” ~Richard Bach, Messiah’s Handbook
Last Thursday, Adahlia received her 17th blood transfusion.
It was a memorable one. We arrived at the hospital on Wednesday. There were new lab techs, due to complete turnover in the phlebotomy lab. (Our favorite phlebotomists have mysteriously quit! It is a huge loss. Those ladies were Jedis with needles… sometimes when they stuck her, Adahlia didn’t even cry. They were with Adahlia since she was just 7 weeks old, and watched her grow, and gave her presents, and loved her. And so, Dorenbecher phlebotomists… where ever you are… we love you & wish you best of luck!)
Anyway, long story short, necessary labs weren’t ordered, the stick was terrible, and the IV tech then failed – twice – to get an IV in. In her defense, poor Adahlia was a bit dehydrated. She had vomited twice the night before, which was a new event for her. She very rarely spat up as a baby, and this was the sort of “I’m-clearing-everything-out-of-my-stomach” projectile event that speaks to food poisoning, or viral bug, or something else that leaves us grown-ups curled at the base of the toilet, moaning, for the duration of the night. As we cleaned her and the bed up the second time, she simply passed out in my arms, limp.
For the next couple of days, she had extremely foul-smelling watery stools. So, on Thursday, in addition to her blood, she also got some fluids and a stool test for bacteria. Her GI distress was a big factor in why we left the hospital Wednesday, and chose to come back on Thursday for the forgotten blood test and transfusion. Luckily, the IV tech on Thursday was a champion, quick-sticker, but he had to do it in the top of her hand (the back of her hand) because of the needle sticks in her arm on the day prior, and, if you’ve ever had an IV in your hand, you know it is rather painful. It goes without saying that it is so, so, tough to have to help hold your baby down while she screams, cries, and murmurs, as Adahlia does, to the heavens for help, and it took the tech a long time to tape the IV down and wrap securely. It was hard work and I am glad I was able to be present with her through it, to hold the space for her and offer her comfort.
After her IV was placed, we waited for two hours for the blood, and then, when it arrived, the nurse informed us that the Red Cross had sent expired blood. Unusable. So they had to order new blood. It made for a long, long day, but I was very glad that they caught their mistake before administering expired blood to her.
Happily, after the IV was placed and despite the length of our stay, it was one of the smoothest transfusion days we’ve ever had. Adahlia and I read books, went on walks in the garden, and played with blocks. It was also our very first transfusion without Joe with us. He has been phenomenally dedicated to her, and it upset him not to be able to support us this time. We missed him, and we managed fine, and she was very happy to come home that evening.
I also met my first, and only other, DBA family that I know of in Portland. (!) Steroids did not work for their 18 month old baby… meaning that they did not help her make her own blood. They did, however, make her face swell, and they made her extremely irritable for the duration of the trial. Luckily, they did not do any apparent lasting damage.
I am not willing to try steroids… yet. This year, I have plans to start her immunizations. I don’t wish to do them at the same time, as I feel it would overload her body too much. I am also still of the belief that it may be possible to get her body to make its own red blood cells using chinese herbs. First, we have to finish taking the “clearing” herbs that her body is reacting to, saying it needs. Then, we can try the “building” herbs, to help it make its own blood.
Adahlia only went 4 weeks since her last transfusion, instead of 5. There are many reasons why this could have happened. It could be that the amazing gift of the days we spent in Hawaii – in the sun, heat, and salt water – were extremely beneficial to her. It could be that there is something toxic in our house that she and I are sensitive to, which we weren’t exposed to while we were away, and we did spend a lot of time outdoors. It could be that chlorophyll is too much for her system, and not beneficial to her. (We were taking a break from it the entire time that she went 5 weeks between transfusions, but had resumed it the first 2 weeks of this past period. When then stopped using it because it appeared to me that she was looking pale and sickly rather quickly, and I wondered if it was due to the chlorophyll.) And, it could simply be that the transfused blood was older, closer to its expiration date, and older blood cells wear out and die quicker. It is, unfortunately, impossible to know at this point.
But, out of caution, we have decided to stay away from the chlorophyll for right now, which we were primarily doing as adjunct therapy to help her body eliminate iron, anyway. This month, then, we are only doing the chinese herbs and liquid fish oil as supplementation. Her iron is still fairly low, at only 536. I do not know if the chinese herbs are helping to keep her iron down, or if her body is just very efficient at eliminating it. But, so far, we are not in need of iron chelation, which is good. She did show elevated liver enzymes, which could speak to liver damage from iron overload, but could also have been due to the potential gut infection wrecking havoc on her digestion. So, we are also doing some infant probiotics to help with her digestion.
As far as my health is concerned, we don’t know what’s going on with my kidney. It feels much better than it did when I was in the ER 9 days ago, but I would be lying if I said there wasn’t a sensation of dull ache and heaviness in it at times. I did adjust my own herbal formula with the hopes of helping it to drain. There are times it feels fine and times it feels like there is fluid in it. If it doesn’t drain out by the ultrasound scheduled this week, I will need at least one, if not a two-step, surgery to address the cause of the obstruction. I truly hope it doesn’t come to that, because surgery affects my ability to care for Adahlia, as well as the rest of my life. But, though I can do my best with herbs, mild exercise, and reiki, the situation (like all of life, for all of us, truly) is entirely outside of my control. We do what we must, and, if we are wise, we find enjoyment and love in it.
I am very happy to let concerned friends know that both sets of Adahlia’s grandparents stepped forward in a huge way to help us out financially. We will be able to remain stable, in this house, through December, which is important if I will be needing surgery soon. We do still hope to move as soon as we are able, because the rent on this house is simply too high. (And there is that possibility of there being something toxic in the environment, which isn’t a very likely possibility at this point, but still remains.)
Adahlia does love this house, though, and I’m so happy she’s been able to enjoy it. Just today, she pointed at a murder of crows flying past the large picture window, saying, “bu! bu!” as they flew overhead. Over the last few weeks, we’ve enjoyed picking figs from the large fig tree in the backyard. Carried in my arms, she points to the tree to let me know she wants to pick figs, and we look up into the branches and see what we can find. The season is pretty much over, now, but it was wonderful – and delicious! – while it lasted.
Adahlia has been in an incredible mood for the last several days – she wakes up super happy. Even when she was low in blood, on the morning of her transfusion and after vomiting in the night, she woke up smiling and eager to play. She “talks” to me until I wake up, sticking her face into mine, like a cat, prodding me gently, pointing at the paintings on the wall and “telling” me about them, crawling around in circles, and then pointing at the windows, as if telling me that the sun is up and its time to get up. I adore sleeping with her. Even when she puked, I was glad we co-sleep, because she was so scared by what was happening to her, and I was so glad I could be right there when she was choking and going through it. Its so wonderful when she rolls towards me and cuddles under my arm, to be able to kiss her head when she starts to cry out while having a dream, and so amusing when she flings herself across the bed, and turns herself in circles.
Co-sleeping is, in a word: awesome. Highly, highly recommended!
Adahlia LOVES books. All day long, we read books. She points to animals and kisses her favorites. She holds her hand up to say goodbye to Mama Llama after Mama Lama tucks Llama Llama Red Pajama in for the night. Her favorite book these days is Lion & Mouse, an illustrated book by Jerry Pickney that has no words, only gorgeous illustrations. She has taken to “reading” it and other books to me, pointing at various animals and actions on the pages and authoritatively saying: “bu. bah. beh.” as she turns the pages.
She waves at passing cars when we’re out and grins and bounces when I dance with her or sing for her. She has figured out how to put her feet into her pants and pull her pants up to her knees. She also can get a sock halfway onto her right foot (the left foot is tricky!) She “talks” to us all the time, eats finger food, follows us when we crawl in front of her, and tries to get us to chase her. She understands when I tell her that we are going home, or going to take a bath. She can put the circle and octagon into their correct places on her puzzle board and happily pounded away on her xylophone the other day. It was the first time that she purposefully struck it in a coordinated way, and seemed to be enjoying the music she was making.
When we see a dog, she points and barks, saying: “arr!-arr!” (She knows this is the sound dogs make because I say the name of the animal and also make the sound when I read a certain animal book to her.) She LOVES petting dogs. Yesterday, together, we hand-fed the squirrel that comes onto our back porch to beg for peanuts. She understands the word “squirrel” and looks to the sliding back door when I say it. She lifts her hand in “hello” to people wherever we go and observes them carefully, looking them up and down, from head to shoes and back again, as though taking in their outfits.
Sometimes, she will poke a person she finds extraordinarily delightful on the tip of their nose. She gets very, very frustrated when she cannot master something quickly, and gets even more frustrated if we try to help her when she’s trying to do something herself. She refuses to eat baby (pureed) foods, preferring to try anything that we are eating, even if she can’t eat it due to a lack of teeth, and can only suck on it. (She has 6 amazing teeth now. Her smile is brilliant.)
She still loves hiding behind curtains and under blankets, and giggles and shrieks with joy when I act like I cannot find her, and when I sniff loudly around her, as if I am a wild animal looking for her. She makes a little howl like a wolf (“arrroooo”) when she sees pictures of wolves or wolf cubs and when we play with her wolf stuffed animals. She will crawl over to us with books she wants us to read, or stuffed animals she wants us to kiss and animate for her. (She has quite the collection between my old stuffed animals, her new stuffed animals, gifts from relatives, and gifts from various hospital visits.)
Adahlia loves cuddling and swinging and spinning and be carried and well, doing just about anything that we are doing. She is absolutely, insanely beautiful and the most wonder-filled, curious, and attentive individual I’ve ever met.
Tonight, in the bath tub, was the first night I could tell that she was really having fun with the foaming, organic baby soap. We squirted it on her plastic toy animals and she examined its consistency between her fingers. She rubbed it between her hands and washed it away, and held out her fingers for me to squirt more onto her hand. Sitting between my legs, she smoothed layer after layer of foam onto my right leg in happy, circular patterns … and surely, my kneecap has never been cleaner!
Also, today, a huge milestone. We were brushing our teeth together – I was sitting on the floor, and she was standing, holding onto a pull-out bathroom drawer. She let go, and stood. She bounced slightly a few times, almost like how a diver bounces before his big leap into the air. Then she took a small, but distinct step forward, barely lifting her foot off the ground. It was almost like a shuffle-step, the bottom of her foot grazing the top of the rug. She did it again, with the other leg. Then she stepped forward a third time, reaching for my shoulder, and grabbed on. Her first steps! They were truly shuffling, baby steps; she has taken larger, more “distinct” steps while holding onto something for support, but they were, in fact, her first true, free-standing steps. Hooray, Adahlia!!!
Its been a busy time.
Its also been an incredible few weeks of reconnection with myself, my strength, peace, and joy. Doing reiki with myself and Adahlia, things shift, open, and are filled with light. As always, we never know what is around the bend, and there is a lot of uncertainty, pain, and stress. Yet, we have found ways to thrive in it, the sadness and grief and fear are replaced with joy and contentment, regardless of health, finances, and hopes. We are getting better every day at making the most of each moment. We are so blessed to be here. Our lives are the opportunity of a lifetime.
How would the world change if everyone lived with the knowledge that they are capable of filling themselves with light? If they were empowered with the knowledge that they can use that light to heal themselves? If they then carried it forward, and, like Adahlia, shared it with others, whether or not they were looking, and whether or not they responded, through their open palm?
What does it mean to heal? Can one heal oneself and still have a life-threatening condition, or die? If so, why? How, then, does that change how we live?
Thank you for being with us in this journey, and supporting Adahlia and our family in your hearts, thoughts, and prayers.
Love and light.
This past Weds, the stent placed to drain my kidney was removed. It was not fun, but it was a fairly quick procedure and I was glad to be rid of it. The ultrasound had showed that my kidney was no longer swollen with water, and had drained to a more normal size. The tissue didn’t look as healthy, and my left kidney was enlarged, so there was thought to be some compensation, where the left kidney has to take over more duties since the right wasn’t working as well.
You could hardly blame it. It had been compressed due to water pressure since my 3rd trimester, or April of 2012. Over a year. It’s not the most ideal conditions for cellular health.
But then, last night, the low, pressing, aching pain that mounted quickly in intensity. The familiar reach around my entire back, side, and front, as though there was a mass growing inside me. Pain grew unbearable. We went to the ER- all 3 of us. Morphine. Anti-spasm medication. The ultrasound techs wouldn’t be back until the morning, so we told we could leave and come back first thing in the morning. At midnight, we headed home to get some sleep.
Back here at 645 with a very tired baby, mama and dad. Pain no longer excruciating, just a uncomfortable, thick, throbbing, but I guess that’s just because I adapted to it (what else can one do?) because my body decided to vomit. There was no other reason for me to be sick, so it must have been pain that Im just no longer sensing.
The ultrasound shows that the hydronephrosis is back.
This likely means another surgery, this time they will have to cut and remove and reattach whatever vessel is obstructing my kidney’s drainage. (That’s the theory anyway, that there is a crossing vessel, that somehow something happened while everything shifted when I was pregnant.)
In the meantime, they will probably place another stent. This is desirable because I want to save as much kidney function as I can. This is undesirable because it was a painful, troublesome procedure, that kept me being able to be a mom to Adahlia for a short time. Any time when I am laid up is too much time, in my opinion. It’s very upsetting to not be able to care for ones own child.
Realizing that the problem was not resolved by the last procedure is upsetting news because I had made plans to begin working at my friends’ clinic for half a day, one day a week, starting next week.
Luckily, Joe is able to be here for me, driving me to the hospital and caring for the baby…
… who is not looking well. She went 5 weeks last transfusion, but she has had a rough time since then. She probably could have used blood this past week, at 3 weeks. I am certain she will be transfused at 4 weeks, this coming week. She hasn’t looked this bad in a long while.
We have received some financial help and we really appreciate it. In a strange twist of fate, this is the absolute best places in the nation for kidney surgery and transplant for me, and one of the best for children’s blood disorders and cancers, too. We cannot get this combination of top-quality western, natural, and oriental medicine anywhere else in the country. We need to try to stay within a drive’s radius, as flying with Adahlia is dangerous and can only be attempted during a small window of time after a transfusion, and coordinating her complementary medicine care for that window would be very difficult, if not impossible. Moreover, as an immune-compromised and unvaccinated child, flying is an unnecessary risk that could endanger her life. Doing it occasionally is I’ve thing. Doing it routinely would be imprudent. (We are slowly starting to vaccinate, on a very careful schedule, but that doesn’t change the fact that she has low white cells and is vulnerable to infection, and complications from infections.)
We need to make it work here, for her sake, and mine. We appreciate your unflagging compassion, help, love, prayer, and support. What is typically a time of great joy and celebration – the first years of a new family together – has been studded with sickness and tragic revelation. We acknowledge it, because it is truly sad, but it doesn’t help us to mourn what is simply the loss of an ideal. We remain very much in love and try to remain vigilant about redirecting our focus on trusting this journey. The truth is that we are some of the luckiest people on earth. Being with the ones you love, in sickness and in health, and seeing the beauty in the ordinary and extreme, makes it special.
We have had a difficult road, and we really wish it were over, so that we could rebuild our lives, but perhaps the roughest times are ahead, for Adahlia and I both, medically, and for all of us, financially. We have been very lucky, indeed, to have managed to keep a safe and beautiful, healthy and stable roof over Adahlia’s head. We would live anywhere, Joe and I, but we do hope circumstances will allow us to find something of decent quality for Adahlia to live in, something around $800 a month. We could make anything work, as far as size is concerned. Our current rent is twice that amount, simply way too high, something we could afford before our health crashed and Joe lost his job through no fault of his own, but we certainly cannot afford now. If you hear of something, run by compassionate and trusting people, please let us know. We have excellent credit and landlord references. We have never been evicted and we don’t intend for this time to be the first.
Thank you so much for being who you are, and being here with us.
A warning, or apology: I am about to be vague.
But it’s on purpose. Perhaps ambiguity is helpful, at times, for its universality.
First, a short backstory, to set the stage.
This has been a tumultuous and quiet year and six weeks.
Tumultuous in its amplitude of emotion, its drastic changes, its whirlwind of revelations.
Quiet in that I have never lived without an accomplishment in mind, without a purpose or eye on some prize, without at least knowing it was a tactical pause, a regrouping, in the ever-pressing push towards the advancement of my place, as appropriate, within this crazy rat race. My whole life I have been, quite simply, a born-and-bred achiever. But during this past year, I have been forced to be still. I have found myself suddenly, and inexplicably, helpless. No ability to work, nor to continue my doctorate, and eventually, barely able to care for my infant child, who was struggling to live. I found myself, in other words, mystifyingly impotent. Weakened. Dependent. And it didn’t matter how hard I tried to right the ship: she was intent on sinking. My health, finances, loved ones, and beliefs on the deepest of levels, all slipping determinedly towards ruin, like ice melting through my fingers.
So in between bouts of despair and rage, there would be this quiet.
And out of this quiet, there would be some awakening.
I have lived a rather interesting life.
I chose it, without knowing, of course, what would happen. I only knew that there was something deeper than how we mostly live.
For a long time, things were rather sad.
For many, many years, it was something of a struggle.
Very dark times. Very sad.
And then there were these points of light in it.
And then there were these illuminations, gifts, you could call them, that cracked open life to show something shiny inside, that could never be owned, but could be experienced, like tasting a fig plucked from a tree.
These times occurred more often. They grew. I felt blessed, finally. Grateful, and at times, free.
The gifts increased. They touched every aspect of my life. I was on to something, I was moving towards something, willingly, wherever it would lead. I merely listened and allowed it to open.
The dark times seemed to have happened to someone else. I could barely recall them. And I didn’t want to. I had shed that identity. I lived happily in this new way. And thought I trusted it.
And then, disaster. Quickly, everything tumbles, like dominos. It doesn’t matter if I scream. It doesn’t matter if I pray. I am alone, and clutching ice.
So much quiet.
So much quiet, that things begin to stir.
I see so many things, looking back. I can see her and her strength. I can see her in her naiveté, and in her fallibility. And through it all, the thing inside her, that she listened to, and didn’t listen to, that didn’t belong to her, but shone brilliant, with the blinding power of a prism, those times, those moments, she unknowingly set it free.
Adahlia sleeps. So quietly, she sleeps, I could be in bed alone. I slide my hand in her direction and my fingers find a heel encased in footie, a rubber-bumped, no-slip sole. In response, she presses her leg to my forearm. Its not enough. She rolls towards me, on to her side, flinging a tiny arm over mine, her fingers massaging and petting my skin, finding and tracing pathways of comfort in the ridge lines of my bicep, my extensor-this, and flexor-that.
I realize: I have lived an extraordinary life.
I realize: I am actually, truly, happy. In this moment. With all this shit going on, and falling apart, I am actually, happy.
I realize: I have lost all sorts of things that don’t matter, even the things that people say are the only things that matter, but actually, don’t.
Whether we are financially ruined by this crazy year or Jo lands a job or we meet a leprechaun with deliciously addictive cereal and cookware filled with gold. Whether my kidney kicks back in or I go into chronic kidney failure. Whether or not Adahlia has a blood disorder.
It doesn’t matter to me anymore.
I have become reacquainted with myself.
The fact that Adahlia exists is pure miracle. She is the most ridiculous, wonderful, insanely beautiful twist in a play I am much too small to conceive. I am so, so grateful to know her, to have been chosen to be her mom.
The fact that Jo can see me, and I him, and we can trace the excavation of our knowing of other in self, to arrive at delight in other, despite everything that has attempted to blind or confuse us, is nothing short of a mind-blowing, heart-bowing, sanctity.
None of this could have happened with out everything terrible that has happened.
And the idea of the three of us being here, together, makes me giddy.
We have come full circle.
All I ever wanted, and never knew I wanted, is now with me. On this journey of self-discovery, I have rediscovered me, a true me, and she has been witnessed.
We not only can grow and change, but we do it together. We are catalysts for each other.
We open our own eyes, and in doing so, we create the space for others to open theirs, and in doing so, we are seen and finally see.
And we are wiling to die, if necessary, to make that happen.
I realize: I could die, right now, and my whole life would be complete.
And that fills me with such bursting gratitude, such soft peace, that I think I would like nothing better than to join my two loves in sleep.
Have faith in your path because you are meant to come through it.
Swing your fists if you must, but don’t sell your soul. Laugh until the sun blinks or swallows you whole.