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The Ache of Not Knowing

March 2, 2014

“When we truly realize that we are all alone is when we need others the most.”
-Ronald Anthony

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Mary watching the water dance

We saw more doctors this week. Every three months we start making the rounds at the hospitals, but sometimes it winds up just being constant. It’s different and the same each time. New ideas each time, new worries, but no answers….

About a year ago we had our first hematology visit. We’ve been there and on the phone with them many times since then. Mary’s red blood cell counts are low and have been for quite a while. It appears to be a production issue- her body simply is not making enough red blood cells, and there really aren’t any good options to encourage her to make more outside of a bone marrow transplant, but her numbers aren’t quite low enough to justify that either. Since she is still undiagnosed, we still have no reason for why her counts are low, and so we have no idea if they will get worse, or if other types of blood cells will start to change as well…. So we watch… we monitor… we draw more blood… and we wait… we wait for impending doom, or an answer, a diagnosis, a path.

We saw neurology this week as well. I adore Mary’s neurologist. She has become very much a friend on this journey- someone who seems to genuinely understand that remaining undiagnosed is exhausting, lonely and tortuous. When the other doctors on our team seem to want to throw their hands up in defeat, she presses them to keep going, because not knowing is not acceptable. But she is also a great diagnostician. She sees what the others may miss- she looks for the zebras when others are looking for horses. Mary has been having these episodes of suddenly falling asleep, mid task again. She has also been having episodes of unexplained intense pain. Cycles of intense fatigue followed by cycles of intense thirst. The endocrinology team we started seeing last fall has already tested her for diabetes mellitus, common in mitochondrial patients. But there is another possibility- diabetes insipidus, where the kidneys- either due to a kidney problem or a neurological problem- fail to concentrate urine effectively, resulting in constant thirst and lots of wet diapers. This is something that has developed only over the last 6 months or so, and I am hopeful that somehow this is just behavioral- that perhaps Mary is only experimenting with a new sign of sorts- she bangs her fist on her chin, not proper ASL, of course, but it gets her what she wants. Because if it’s not behavioral, then it is another change, and more reason for more worry with no answers.  Her neurologist wants to find a way to re-sequence her exome. We had the full exome sequencing done last year, and the results were disappointing. We didn’t really discover anything new about our girl, except for this ZBTB20 gene, that simply doesn’t explain her symptoms. Mary’s doctor believes they may have missed something and that perhaps another lab with different technologies or different technicians may see something that the first lab missed. But the test is expensive and I’m not sure our insurance company is going to want to pay for it twice… She also thinks we should continue seeing her colleague in Cleveland, hoping that between the two of them they may think of something- something familiar about my sweet girl that may give us a road map.

Right now Mary is doing well. She is not nearly as sick as she was last year. Somehow – perhaps it’s been all the snowy days away from germ-filled schools- she has managed to stay relatively healthy this winter. There is no big test result waiting on the horizon for us. But there is still the constant parade of specialists, taking up more and more of her precious time. I have a list sitting here on my desk- 14 more specialists we have to set up appointments with.

Last year I remember sitting alone with Mary, in the hematologist’s office, adjacent to the inpatient pediatric oncology unit. I sat there and waited as he walked out of the room to look at Mary’s blood under a microscope, and a familiar knot, formed and twisted in my stomach as I waited. Because we don’t know, we can never assume. Because I knew that this kind doctor could walk back into that room at any moment and say something to me that would destroy my whole world. It’s like that every time we see a new specialist. And even on those visits that are seemingly routine, that knot is there, the memory of the fear never goes away and it comes back into full focus, every single time I sit in one of those tiny exam rooms with my girl. We watch Mickey Mouse on the ipad, and I try so hard to put everything I have into counting the Big Red Gooey Fish that Mickey is trying to catch in his boat with Pluto, while on the inside the knot tightens and the emptiness of not knowing grows.

I am tired. I am exhausted. There are so many symptoms to manage, so many unknowns to monitor, and all I really want to do is just be with my girl. All I really want to do is be a mom to my kids. But I can’t let it go. There are too many potential disasters on the horizon if every single system in her tiny body isn’t constantly monitored- or so they tell me, but even they don’t know…..

It is so strange to admit this out loud. I have multiple friends with children who are diagnosed with different devastating illnesses. Each day they have together is a hard-won blessing. And while I would never want any of these diagnoses for my own child, and I would do anything in my power to take away their pain, at the same time there is this strange twinge of jealousy- an ache for the community, the bond that comes with a word that defines a set a symptoms. And maybe this hurts even a little more to admit: as much as Mary has improved in her ability to make herself understood in very simple ways- tapping on her mouth to say she’s hungry or thirsty, for example, and as much as I have said so many times that it is okay with me if she never speaks, I still ache for that connection, for some reliable form of communication. When she cries, she can’t tell me that it hurts, or where, or that she’s scared or why… When she’s happy, I can guess at what she is rejoicing in, but she can’t share it with me out loud the way other children can. And while that silent celebration, or that quiet connection we get when she presses her head into mine is so beautiful, I still feel like I am not getting the whole story. Selfishly, I want the kind of back and forth relationship that I see so many of my friends sharing with their children. And somehow going through all of this, all of the unknowns, all of the fear, without really being able to communicate with her in the way that so many other parents can with their children… I just feel so lost, like I am guessing about so much, and then second-guessing myself. And then I feel guilty for even feeling that way, because in reality the connection that we share is so beautiful, it seems selfish to want anything different from what we have…

So many people have told me to go somewhere else- see a different doctor in a different hospital, maybe they will have some answers. But where do we go? You see, while we have seen more than 20 different specialists with Mary, there still is no place, no one doctor to check in with, even if it were to mean a trip across the country, or across the globe. There is no path laid out for us, no road map. We are so very alone here on this journey, with no guide, no map, not even a footpath blazed through the woods. And I just don’t know at what point do we get to stop searching. When do we just get to be a family? And when do we get to stop feeling so lost and alone here?

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Mary walking carefully on the frozen pond near our house, with Troy and Joyce racing across the ice ahead of her.

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4 Comments leave one →
  1. March 3, 2014 7:03 pm

    I cannot even begin to say, “I know how you feel.” Because I don’t. God bless you for being the sweet and wonderful mom you are to your children and to little Mary. She is precious and everything you do for her is worth it. I hope and pray someday (and soon) she will be able to get a diagnosis and a means to heal it. I don’t know if you believe in God or not, so I don’t want to push that on you if you don’t, but I had a vision of you and your little girl in the afterlife. She is perfect. She is healthy. You and she are having that relationship you want so badly with her now.

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    March 15, 2014 12:10 am

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