I'm a star... what am i?
I had my care plan meeting at the child development team today. We meet up every 6 months to discuss plans for the future, and to discuss how far i've come since the last one. Eating was the biggest thing, along with my mobility. In fact, i'm doing so well they were going to release me from there cos i don't need as many therapies anymore. My care will be moved to islington cdt now, but if i'd stayed where i am now... they would have let me go this year. My paediatrician also told us that she spoke to the geneticist at great ormond street about me, they're going to work as a team and document my chromosome abnormality, along with my progress in the medical journal. They want to give others hope. My abnormality is extremely rare, there aren't any documented cases, the only similar ones the geneticists could find stated 'mental retardation'. So, what better than documenting it all and giving others hope. My paediatrician said that she never for one minute expected me to turn out as i have. That's how well i've done and i'm a star. Mommy and daddy are very, very proud of me. They'd love me, no matter what... but i'm a little soldier and deserve a pat on the back.
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Here’s a poem, If (with words adapted from the Samuel Coleridge poem of the same name) from us all in Goa... Big kisses Luca, congrats from us all for doing so brilliantly in the last 6 months, and see you all in the spring! xxx
If
If you can keep your head when medics around you
Are losing theirs and making you feed by tube;
If you can trust yourself when doctors doubt you,
But make allowance for their doubting too:
If you can wait for ops and not be tired by waiting,
Or, being anaesthetized, never make cries,
Or, at the dentist's, don't give way to hating,
And yet don't seem too good, nor act too wise.
If you can eat---and not make food your master;
If you can drink---and not make drink your aim,
If you can meet with injections and then plasters
And keep the nurses smiling just the same.
If you can inspire the blog your Mum created
And look soooooooo cute in every fresh photo
And have your progress joyfully recounted
And so keep other parents in the know.
If you can make one heap of all your nappies
And risk it on one day of ‘nappy free’
And leak, and start again with fresh beginnings,
And never breathe a word about that pee!
If you can force your heart and nerve and sinew
To ‘cruise’ the chairs long after bedtime’s gone,
And so hold on when there is nothing in you
Except the Will which says to you: "Hold on!"
If you can meet with Profs and keep your virtue,
Or visit Rome ---nor lose the common touch,
If neither scans nor heart surgery can hurt you,
If all men drink with you, but none too much(!)
If you can fill your parents’ every minute
With sixty seconds' worth of love and fun,
Yours is the Earth and everything that's in it,
And---which is more---you'll be a Man, my son!
Well I can't top what Lizzy and Justin wrote, such a lovely poem, but wowzers, your Mum and Dad aren't the only ones who are proud of you Luca - Suuuzie and Jeremy are too!! Can't wait to see you again, whenever that may be. Lots and lots of love from us.
xxxxxx
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