This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Saturday, August 14, 2010

Dear Doctor

Dear Doctor,

There are some things I wish I could tell you, but I'm too afraid you'll misunderstand. There are things I'd like you to know, things that I'd say if only I didn't worry that you'd think I was being critical, or even worse, ungrateful.

For I am grateful for the work you do. I fully respect your knowledge. I wouldn't come to see you any more if I didn't think you were capable and professional. I thank you every time we leave your office, and I hope you don't think I'm just being polite. I mean it.

I think it must be hard to be the doctor of a child who is dying. Of course, it's nothing compared to being the mother of a child who is dying. Still, I appreciate that we are patients who might not always inspire the happiest of emotions. I know you might go home at the end of the day feeling tired, or even sad.

That is one of the things I want to talk to you about. Sometimes I think that since you can not do much to help my child, certainly since a cure is beyond you, you feel a bit helpless. Like you can't do much for us.

In the strictest sense, you are right. The one thing I want the most is for my child to be healed, and this you can not do. What I'm not sure you understand is how much you still can do for both me and my son. The process of dying is not easy for either of us. You might not be able to offer much help physically, but there are some ways that you can make life so much easier for me, and thus for my son as well.

These are the things I wish you knew. The "extra miles" I wish you would take. I think you are a kind person, and would not normally refuse the request of the mother of someone dying. I think it is just that you are busy, stressed out, and do not realize the gift you could give us.

So I am writing this letter to you. To show you the ways you can help us through.

Things like being very, very transparent. I put two "verys" in there for emphasis. What I am asking for is extra time and care with your explanations. I want the true, the WHOLE truth and nothing but. One of you actually took the time to SHOW me the photos of my son's retinas next to healthy ones and explained it all to me. It was worth so much more than merely telling me my son's retinas had swollen nerve endings. Can you see how much it meant to me that he did this?

I wish that you could always sit down with me and show me the x-rays and MRI results. It is so hard for me to explain to the other people in our lives what I can only barely grasp. Not to mention that what we hear alone is so hard to remember, but what we hear and see stays with us so much longer. Or that I have absolutely NO idea what things like the numbers for his liver function really mean. Sometimes you don't even tell me what a "normal" range is. I forget to ask because you move on to something else, and then I have to try and look up INR on the Internet so I can figure it all out.

It is so hard for me to explain to the other people in our lives what I can only barely grasp. I need to explain things to all the aunts and uncles, cousins, grandparents and friends. You could make this all so much easier. Not to mention the other doctors who ask me questions about my sons' health. They ask me the results of an MRI that I never get to see, and I sure can't remember your exact words anymore. Which leaves me fumbling to explain "something about ventricles were enlarged."

I know you are busy, but you can really make a difference for me in a real and practical way. It's my son, I really want to understand as much of this medical stuff as possible. I'm an eager learner!

Which brings me to how much I appreciate when you are confident enough to admit what you don't know. In particular, the doctors we have had who actually contacted a doctor they didn't know for a "second" opinion. I don't think those doctors fully realize how much more at ease I feel, both with them, and with their suggestions. Every discussion with them after that is different for me. I trust them.

And please, please do not just look my son's illness up in an old medical text or even worse, Wikepedia. My son has a specialist who works in the same hospital. This specialist has the best and most current information on my son's condition. If you are going to take outdated or general information, you might as well just ask me. Unless your textbook is specific for metabolic conditions and printed in the last 2 years, I really do know more about it. But what I really wish you would do is consult our metabolic specialist with your questions. I know he is busy as well, but I think he wears a pager, and since there is little he can do for us either, I don't think it is too much to ask him to take a moment with you. My child is dying, and this is an extra mile you can go to make things a little more bearable.

And not just transparency with test results, or gaps in your knowledge. Please, don't protect me, just say what you think, say what you mean. Don't tell me I'm being referred to "Symptom Management." Tell me it is also Palliative Care. Remember, I want the WHOLE truth. The doctor who looked me in the eye when he told me my son might or might not walk, talk or crawl did so with compassion. He was also honest. He has my confidence and respect.

And I know that you have protocols and procedures you must follow. I know some rules can't be bent. On the other hand, some of you think "outside the box." I know you must "do no harm," and I'd expect no less from you. Sometimes you can be within these guidelines and still outside the "box." I hope you can take that mental leap, because that way we can often come up with ideas that make our lives easier.

I very much appreciate the neurologist who offers to write a memo to the rest of the staff explaining why we don't want to bring our child in for prolonged seizures unless they are immediately dangerous, but we might call asking for help to decide on the question. Or the Palliative Care Team who allows us to give our son oxygen "as needed." And the ENT who is willing to consider a surgery to sew our child's epiglottis up on his tongue in order to help keep him from obstructing when he breathes. Outside of the box thinking.

You know the little details that make my life so much easier? The doctors who give me their email addresses. The ones who let me speak directly to them, instead of filtering everything through a receptionist. The ones who make time for last minute emergency appointments. The ones who go out of their way to "piggyback" appointments and procedures. The ones who send out appointment notices instead of telling me to phone in a couple of months to book the next appointment.

And please, as much as possible, keep in mind that when you see my son, he's not at his best. You see him when he is sick, when he is tired, when he is drugged up from medication, or when it is his normal nap-time. I wish you could see him when he is alert and happy. When he is playful and smiling. So please remember that what you see lying in that hospital bed is not a little lump that just lies there breathing. Remember that is a little boy with a visible personality, complete with likes, dislikes, quirks and all the variations of emotion and feeling that humans have. I know I don't seem like an impartial witness, but please realize you can't get the whole picture just by looking at him for 5 minutes.

There is more I could say, more I'd love to say, but you are busy, and these are some of the big things I wanted to tell you. In any case, you could probably figure some things out on your own, as long as you realize the power you hold to help us.

You can't cure us, that part is inevitable. You can still make a difference. You can help us have the best time together possible, and you can make dying a lot "easier" for us all. You might never know the gift this is, but I will NEVER forget it.

I once read a twist on the expression "Anything worth doing is worth doing well." This one said that "Anything worth NOT doing, is worth NOT doing well." You can't cure us. But this not curing us can be done poorly, or it can be done with excellence. I hope you will live up to my trust in your compassion. I hope you will go the extra mile in not curing us.

In the end, you will have nothing but my gratitude, and the knowledge that you made some one's world better and easier in the worst of times. But maybe that is enough for you. I'm guessing that is why you got into medicine in the first place.


A mother

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