FTT is an acronym which has appeared on many a note about our girl and it stands for Failure To Thrive. There are many many MANY things I hate about the term.
Dealing with the obvious one first, it can’t be a good thing, right? Everyone wants their children to thrive. The thing that gets me about it is the accusationary tone. Helping our children thrive is part of the whole parent job description. Parents whose children thrive are commended for their excellent parenting! By writing FTT on her notes I just read the ‘FAILURE’ bit. You, yes you Elizabeth, are failing to sustain your child, you are failing to meet her needs and you are failing her, now go and join that unfeasibly long queue for a blood test and think about what you’ve done.
The dictionary definition of thrive is – to grow, develop or be successful. To casually assert on her medical notes that Mojo is not achieving this magical ‘thriving’ status totally disregards the tremendous progress she is making. It makes me defensive of her. Were she able to understand the world around her and comprehend the meaning of FTT how unspeakably defeated would she feel. Having spent all week being bent and poked without complaint or tears, having drunk shed loads of that disgusting high calorie milk we insist she drink, she’s even been trying to sit up all by herself and STILL you don’t think she’s succeeding.
The final thing I hate about FTT is the road it leads us down. The road we currently stand at the bottom of, the one with just enough turns in that you can never see what is around the corner. Today FTT lead us to blood tests and results which mean we have to start medicating our girl. We have thus far been very very lucky in avoiding medication for her. She has self managed all of her symptoms, it now appears that can no longer be the case. This makes me sad.
It is ungrateful, unrealistic even, to feel sad. Scroll back a mere two blog posts and tell that pregnant woman that she’s going to feel sorry for herself because her baby needs some electrolytes replacing and she will cheerfully smack herself from the future in the face for being ungrateful. And yet sometimes the little girl within me wants to, despite everything, stamp her feet and shout that it is just not fair. Why can’t she just be fine, why can’t my baby be well, why do we have to go through all this. It only lasts for a minute or so and is always quickly replaced with the overwhelming realisation that without Holoprosencephaly she wouldn’t be our Mojo and maybe we would have an easier life, but a life without our girl would be infinitely poorer.
So hand in hand we go back to the hospital to discuss next steps and despite all the little FTT notes they may put in her book we will continue to grow, develop and be successful. Together.