A Letter to the Experts.

Dear multitude of doctors / specialists / experts in your field that we have seen in the last 36 months,

Hello. I’m R’s mum. You might not remember who I am, although I generally see you biannually. That’s fine, you have plenty of patients, I’m sure only a handful stand out, and even less so by name. As a kid, I always took it for granted that my optometrists and the like knew my name and age, not supposing that the file on their laps acted as a subtle cheat sheet. It’s one of your many mythic properties, to remember and care for everyone individually.

But now I’m grown up, and my son is the patient. And while I don’t expect you to remember that he doesn’t like to speak in new places so there’s very little point you asking him if he likes cars, or that we don’t actually use that particular obvious nickname so he wont answer to it, I do expect a few things.

I expect you to remember what condition he has, and what you told us last time. It’s easy really, it’s all written on that very same cheat sheet. After all, we’ve been sitting in your waiting room for nearly two hours, another two minutes wouldn’t have hurt while you scanned your own spidery writing from six months ago. In contrast, I don’t need to be told as if for the first time that my son has Nystagmus, as that’s as obvious to me as you telling me his gender by now. I know his condition, I live it every day. That patronising explanation of what the condition means and what areas it may affect is a bit unnecessary, as after all, your notes would tell you that I have it too.

If I’m meeting you for the first time, there are a few ways to ensure we can be friends for life. Because I’m already your biggest fan, you’re helping my son. Anything you can give us in the way of advice, support and help is worthy of the boatloads of gratitude I continually give to the amazing people who work in our healthcare system. So it takes something out of the ordinary to shift my adoration in a first meeting. I’ll warn you from the outset so you can keep my boundless respect. Please don’t ask me “what’s wrong with” my son. Nothing is wrong with him. He has a condition. If he wasn’t too young to understand that comment, I would be outside drafting my letter of complaint right now.
Please don’t address my scepticism with I’ve been doing this for years… because all a mother hears is the silent …but not with my child, which is so easy to end the sentence with. Your years and your credentials mean nothing to me, if you cant try and get to know my kid as an individual.

Please don’t laugh and say “That’s the first time I’ve heard that one!” when I tentatively mention that another doctor has said something  that differs from your point of view. If I can’t trust them, then ipso facto I can’t trust you. And if I can’t trust any of you, and I don’t know who to believe, then you’re saddling me with decisions and choices that I have no way of making on my own, and taking away the pure relief of handing over at least the medical side to what should be wiser heads than my own.

Try not to judge me instantly. I’m a mother, worried and proud, but that doesn’t make me hysterical and biased. I work, and enjoy it, but that doesn’t mean I neglect my son or don’t want to put the effort in. I’m a person, impatient for progress, but that doesn’t mean I’m looking for a cheat or a quick fix. And if I am guilty of any of the above? That’s okay too, because you don’t know my whole story.

You don’t look at my son with my eyes. You can’t see him, tiny and blind, with parents hopefully cooing at his sightless face, hoping for a response that he even knew we were there. You didn’t sit at home with me, too scared to go on play-dates with other excited new mums in case they asked me why my five month old didn’t smile. You didn’t share my joy when the smiles came, the movement came, the speech and understanding came at long last.

So if I want more information than you feel like explaining to my layman’s ears? I want more time than the ten minutes you’re allowed to give me, or more estimations than you’re really supposed to divulge at this stage? Humour me. Answer me. Don’t try and distract me away from answers to legitimate questions which you’ll forget as soon you close his file. Because I’ll take them home with me to fill my evenings with, for six more months until I come back resolved to ask them all again. I’ll worry and stew over your poorly chosen words and ambiguous predictions for the year ahead, until my friends and family are bored of hearing the same confused summaries.

He’s just a file to you. I can’t make him be anything else, and I’m glad. I need you to make the cool headed decisions and uninvolved assessments that I can’t ever make, and wouldn’t want to. But I’m not a file. I’m a mother. And I’m still here when that file closes. 

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The usual suspects

I don’t know how many of you have had the misfortune to take your kids to hospital appointments. My guess would be most. Whether its routine check ups, short term problems, or something more serious, we all find ourselves sitting in doctors waiting rooms from time to time.

With R’s nystagmus, we have settled into a twice yearly bundle of appointments which last about one month. Tiring and stress inducing, yes. But also lots of time for people watching.

I give you, The usual suspects of the paediatric clinic.

1. The attention seeking child.
He decides you are the most likely people in the waiting room to appreciate his genius humour, and therefore spends the waiting time trying out jokes, funny faces, stories and limitless attention grabbing poses. Although annoying, and certainly not funny, he alone generally doesnt take up too much of your time before he is removed, unless he is disasterously paired with #2.

2. The overly doting mother.
An exaggerated version of most mothers, this mum doesnt only think her kid is adorable, (which we all are guilty of) but she is certain that the rest of the world must think it also. Generally brought on by whatever reason they are also at the child clinic, I cant blame her for her doting attention on her child, but I can blame her for inflicting it on the rest of us. When paired with the kid above, you have no hope of the child being removed from your immediate vicinity, as why wouldnt we want to listen to a 2 hour stand up performance from her little angel? Why, we should be thanking her for the entertainment. Isn’t he just precious? Isn’t he just hysterical? Cue tight forced smiles until your name has been called.

3. The germy kid.
Unlike in a regular doctors office, where you always take your life in your own hands to see a GP, in a specialist clinic, you shouldnt generally need to come armed with hand gel and face masks. However, (and I really do feel for the parents, as one day no doubt it will be my turn) we all wait up to a year for some of these appointments, and no gosh darn cough or cold is going to make us miss it. So I see you bundle the child in question up, take them to the appointment anyway, and try to ignore the other mothers evil stares while your spluttering wheezing child fingers all the books and toys and coughs on any unsuspecting kid in their vicinity. I presume you know they should be in bed, so I dont judge you, only pity you. Because on behalf of all the other mothers in that waiting room, we all hate you.

4. The uncomfortable dad.
I can see it written all over your face. You shouldn’t be here. You should be in your important job attending an important meeting about important stuff. Due to some crazy twist of the natural order, your wife actually had something more important than you to do today, (is that even possible?) and so you have taken over chaperone duty. You dont know where you should be going, you don’t know where to hand this form into, your kid is coaching you on the names of the doctors, and you have a list of questions in your wife’s handwriting that you keep fingering nervously in your pocket. The sooner this whole thing is over, the better.

5. The Jew that is making us all look bad.
Do they keep a chassidish man with no social skills in the closet at every hospital to take out when an ordinary modern orthodox couple come along to make us feel like we want to die? He barely speaks a language that isnt yiddish, (I would imagine the secretary doesnt really understand your ‘nu’ing.) he brings with about 7 books to learn, all of which are giant, (ever heard of a pocket mishnayot?) he entirely ignores the child he has come with, having to be shaken to attention by the kid when her name is called, and talks loudly and unintelligibly on his phone for the duration of his visit. (then why bring the books?) And the very worst thing? He keeps looking at us. Stop it, it’s going to make people think we associate with you. Oh no wait, it’s so obvious you’re glaring at us, people will probably think we’re mortal enemies. Much better.

Feel free to add yours to the list, I’m off to another of November’s people watching sessions. I suppose I’m fairly earning the tag of ‘The eavesdropping starer’.