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Showing posts with label positivity. Show all posts
SAY no evil, hear no evil…..
Wednesday, 18 March 2009
Its been one of those mornings….I know some of you are new to my life…so you may or may not be aware of the fact that Deion is going through some tests at the moment. He seems to be losing some muscle tone, developing squints and having trouble swallowing. So he is undergoing all sorts of investigations…Deion had an appointment today at our local hospital. He visits four different hospitals, but we were local today.
Now I often moan about how the system works with regards to appointments. This particular clinic schedules appointments three minutes
apart…I kid you not…ridiculous really, by the time Deion drives in the room in his electric wheelchair, takes out a couple of potted plants and a table leg…our time is up. So needless to say, the clinic always runs late and although our appointment was at nine minutes past nine, the clinic was already running about six hours late by then…(you do know I tend to exaggerate by now right?)Now, Deion has been going through this for a while, and all the consultants at all the hospitals have his detailed notes….so I am under the mistaken notion that they should vaguely know Deion, his history, our family history ever so slightly. Some of these consultants were even Aaron’s consultants too.
In the beginning, I expected to have to talk to these consultants a few times and ask them to be careful about what they say. Of course, while most eleven
year olds wouldn’t have a clue about muscular dystrophy, progressive neuromuscular and life curtailing illnesses… Deion does, because its all the same doctors, the same words, the same tests and same fears as when Aaron had to go through it.So I have asked them to be careful what they say in front of him. Deion is fine as long as he knows what’s going on, as long as he is told they are just ruling out, looking at and don’t bandy around these awful words in front of him, he can cope.
It breaks my heart to see his little face drop when they talk about mitochondrial cells not performing…and to be fair to the docs…what eleven year old should understand this???? Well!! Deion does unfortunately. And no matter what I say, or explain, they won’t stop saying these things in front of him.
I’m not sure what to do.
Last time Deion got really upset, so this time I stepped in the room before Deion, and pre warned the consultant about Deion’s understanding of the terminology. She looked at her watch twice, obviously the three minute appointment did not allow for a mum’s pre consultation, but undeterred I went on and took up those three precious minutes.So in comes Deion, he’s a little nervous I can tell, because he’s driving is a little erratically… he ran over my toe, crashed into a chair and killed a small side table. He parked in front of the doctor, I sat in the chair next to him and she asked him how he was...so far so good.
And also, at Deion’s insistence he was wearing his T-shirt that says “if you can’t say anything nice…don’t say anything at all.” We thought this would have gotten the message across….
Then she turned to me and said, “There’s definitely something neuromuscular going on, we need to see if it’s progressive and how aggressive it is, at this point a full muscle biopsy to get an accurate prognosis is essential.”
For the love of god….did she hear nothing I said.
I resisted the urge to kick her under the desk, but she must have clocked the look on my face because she went silent and then said “oh,” very quietly.
I spent the next ten minutes explaining to Deion that nothing is certain and we are just right now trying to find out why things are harder for him now…every now and then I turned to the doctor as if she was five years old and said, “isn’t that right doctor,” to which she nodded and smiled.
She's lucky Deion wasn't in Yellow Lightning mode...he would have zapped her!I know it is hard for docs, I know they are under pressure, and on time scales that are nothing less than ridiculous. But I was so clear….
Is it me? Am I trying to protect him too much? But we don’t know anything yet, and we are sooo trying to be positive that the news won’t be bad, so shouldn’t we be ignoring all those words to a certain degree? Or is it just burying our heads in the sand?
The thing is, we were accused of doing that with Aaron, but we felt that if we stayed positive and fought, he would too…and he had seven and a half years when they gave him six months…so how can it be wrong?…there may be no connection, but we think there is…..
Well, Deion got rewarded with a detour on the way back to school and a yummy extra breakfast, all the while we made up really crap jokes like...'what do you call someone who totally ignores everything you say?'...' a consultant' cue raucous laughter from us and puzzled looks from fellow diners! and he went into school cheered up, giggling and pleased to have a secret that we’d played truant for an hour! I’m sure there will be more questions tonight, so I guess I’ll just do what I do and make sure he feels safe now!And I’m very proud of myself, I didn’t cry until I was safely indoors, and only threw two plates….
Big sigh!
