It is intriguing that the further we move through Alice’s diagnosis and assessment process, the more I seem to lose sight of why the process itself is necessary.
That’s not to say that I will ever forget that the end-game is what we think is best for Alice.
What I think I am trying to say is that you become so focussed on the goal that you forget why it is that they need to push, pull and poke my beautiful daughter in every way imaginable two or three times a week for seven months. The opinions we have sought from people beyond Alice’s Doctors have convinced us of one thing for sure. If we want Alice to speak, then a CI is our only option.
As you may be aware, here in the UK, after an appeal process, the National Institute for Clinical Excellence (NICE – there’s a misnomer if ever I’ve heard one) has now approved all children for whom a CI is the recommended intervention for bilateral implantation. Everyone we have met with experience of bilaterals says they are the way forward, be they parents or impartial professionals. Ergo, Bilaterals are the way forward for Alice.
I don’t even know whether I really believe this myself. I have long since stopped knowing why Alice will have needed over 14 sets of VRA by the end of this. Are we learning anything different or is Alice really at the mercy of an opinion?
I can’t even think about the surgery right now. The implications of what this will entail – holding my tiny, beautiful, delicate daughter as they put her to sleep so they can cut into her head and skull – seeing her wake up, distraught and confused.
Will it all be worthwhile?
What would you do?