Monday, 4 August 2014


Today in SPACE (a baby program) the moderator asked us to tell the class what kind of movement our babies could do. But before we spoke she told us we weren't allowed to say what they weren't doing yet (he can roll onto his side but not his tummy, for example.)

She said we need to focus and celebrate what our babies CAN do not what they can't.

This felt like a breath of fresh air.

Every week we go to the hospital, or they come to us, once or twice, to check on Baby A. We have her pediatrician, nurses, speech language therapist, developmental therapist, geneticist and dietician.

Each one, by nature of being medical staff, focuses on what A can't do yet.

A can't....suck normally

A can' her swallow with her breathing

A won't...ever be able to handle a bottle

A isn't...gaining enough weight yet

A has...a chromosome problem we need to look into

A might...have certain problems as she gets older

Oh and add myself into the mix.

I can't...nurse my baby naturally

I can't...hold her and tube feed her at the same time

I couldn't...give her the best start in life

I can't...bear more children without medical help

I understand the medical profession has to focus on these issues. And they are doing a stellar job looking after A (and me.)

It's hard when people always ask me when her tube is coming out. I don't berate them for asking- I would wonder the same. But there is no concrete answer, and sometimes I'd rather focus on something else.

Hearing, week after week, the things A can't do it quite tiring. I nearly burst into tears in the SPACE class (I saved it for my car), because it can all just get a bit too much.

I want to focus on what is right with her instead:
  • Her gorgeous smile
  • Her non stop wriggles and rolls
  • Her bright blue eyes
  • Her inquisitive nature
  • Her tuft of hair on her head- the combover
  • Her intensity when she focuses on a toy or a person
  • Her need to look out at the world
  • Her love of food
  • Her need for cuddles when she is tired
  • Her bravery when I change the tube tape. She doesn't cry anymore, just co-operates
  • Her cooing voice
  • Her little rolls on her thighs
  • Her love of her dummy
  • Her smiles for mummy and daddy
  • Her trust of strangers
  • Her tickly tummy
  • Her love of bathtime
  • Her ability to handle me putting the tube back in
  • Her cries that let us know when she needs something
There is more of course. 

It's so easy for people to define A by her feeding issues because it's right there on her face for everyone to see. People see a sickly or weak baby. But A is neither. A is strong, she is courageous, and there are a million more things right with her than wrong.

I need this reminder too, I am just as likely to worry about the issues than focus on the good.

I've shared this quote before, but I think it is so apt for A.

Every person is so much more than their weaknesses or deficiencies.

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