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!

Tuesday, December 22, 2009


So today we had a couple of appointments. Always very stressful for me. I would like to say, for the record, that I am very thankful for the good level of health care we do have, especially since we could never afford Joel's needs on our own. I'm saying that so that you know that when I share this, I'm not complaining about health care...

It's just that most appointments leave me, .. well... raw. It's the best word I have for it. Like someone took a great big steel wool scrubber and scrubbed me emotionally til I was good and red, the skin off and very vulnerable.

I start off having to mentally prep myself the day before and on the way there. What do I need to communicate to the doctor?? What approach works best if I need to be clear on a need or a point to make? What do I hope to achieve? I need to mentally "sharp."

What really makes these things so exhausting though is that they are such a reminder of Joel's illness. I guess that seems strange. Yeah, i do think about it almost all the time, and sometimes I feel like it has taken over my whole life, but there is something especially intrusive and "blunt" about going in for appointments to the neurologist, audiologist, eye doctor, metabolic specialist, hematologist, feeding clinic, orthopedic doctor, etc. A hammer blow sort of encounter with reality.

And of course, reality at home is much more "comfortable." I don't have to have my "game face" on at home. It doesn't matter if I shed a few tears. It is different out there in the world of medicine. No where else does Joel's illness hit home so much and no where else does it seems so important to still stay calm and "in control."

I mean, every time we go in to the clinics at Children's, not only is is clear acknowledgement that there are many, many things wrong for my boy, seizure disorders, liver problems, near blindness, and on and on, but also there is a terrible truth at the back of it all. One day, hopefully one day far in the future, but one day just the same, Joel will likely be entering these doors, but not coming out again.

But I gotta stay cool for my boy. I can't "fail" him by crying too much or getting too upset at any setbacks or problems. If we need something, I gotta pull it together so I seem reasonable. I don't want them to feel someone needs to put ME on medications. I am raw, raw to the point of redness, points of blood tears might be on the tips of my eyes, but I need them to know that yes, I am coping "well."

It is exhausting, and many a time I have come away tired to the bone and ready to climb in the car for a little cry. Especially any time anyone is the least bit thoughtless or difficult to work with. There have been a few nurses who had no idea why Joel was there who almost reduced me to a blubbering mess over some small slight or snub. It doesn't take much when you are raw like that. You are pretty sensitive. You can imagine how scary it is for a proud woman like me to fear that the nurse who berated me for leaving my stroller unattended will turn around to find me silently weeping!!! Not only sad, but utterly humilated too! Don't worry, I didn't break down there, but I had a few "sniffles" in the exam room which I got under control before the doctor saw me.

What I would like to say before I go, however, is how much little kindnesses help ease that sensitive raw pain. People who go with me for moral support are so wonderful. Also, as happened today, doctors or nurses who have time to be kind, caring, and friendly do so much.

My eye doctor is a terrific person. I was dreading the appointment, because I feared that again I might be asking the impossible (to "piggyback" two medical procedures on the same day and general anesthetic). Not only did he offer to do that if he could, he greeted us with such a warm smile and handshake. He assured me when I thanked him that he would do the same for anyone, but I am still so thankful that he didn't hear my request with a frown and a doubtful voice. He saw us out with a smile and a handshake too, and I know he meant it.

So today I went in dreading another appointment. But when I left I didn't feel humiliated or so raw and vulnerable. I felt, well, almost good, despite the fact that Joel has had an average of one appointment every week since September. I felt like a mom who had gotten the best for her boy, was working well with the medical profession, and able to handle things. What a nice Christmas gift for me, and of course, the person who gave has no clue! Tonight I will ask for a special blessing on this kind doctor.

It is so great when we are expecting the worst, and instead, we get the best!

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