It has been one of those weeks when you look back and can't think how it got to Friday already. Lucy has had a pretty good week but has been really tired at the end of the day. At least three nights this week it has been a real struggle to give her her supper before she fell asleep. Last night I only manage to give her half her supper before she passed out. She had a full day of school in the morning and nursery in the afternoon and by suppertime she just ran out of energy. I finally gave up on trying to keep her awake and put her to bed. She had a really good nights sleep and I don't think she stirred until this morning. I think she is finally getting back to normal and I have started to see that little spark in her eyes again.
On Wednesday Dawn took Lucy to an ophthalmic appointment (eye check up) at the hospital. They are still trying to establish how much Lucy sees and if she responds to what she sees. The usual stupid questions were asked, "Does Lucy ever reach out and touch anything?", "How does Lucy communicate?" etc. Even if Lucy wanted to reach out and touch something, she isn't able to! Dawn explained that Lucy responds really well to changes in light, particularly from dark to light. We have some lights in her bedroom that she lies under and whenever we turn them on Lucy raises her arms, her expression changes and sometimes she will make little noises as well. Now if that isn't responding to what she sees then I don't know what is. Now she doesn't start clapping her hands or start singing twinkle twinkle little star but for her to react at all is absolutely brilliant and I just love watching her while I turn the lights on and off. Anyway the ophthalmologist turned the lights off in the room and the turned them back on again. Lucy immediately raised her arms and made a few little noises. Dawn could feel Lucy's response as her body stiffened as she raised her arms an inch or two. The ophthalmologist didn't say anything but just looked at Dawn with that shrugged shoulders look on her face. Why do these people always have to make comparisons with what they perceive as a normal reaction from a normal child? Maybe they are just not trained to understand that the same reaction in different children can be expressed in different ways. I can just imagine what was written in Lucy's medical notes. Dawn wasn't in the mood to challenge her and even if she had it would have made no difference. We know that Lucy must be seeing something and that is what is important. I have just started reading a book which has a forward by David Cameron (MP) who has a four year old son with epilepsy and cerebral palsy and he writes,
"The important thing is that you will come to know your child better then anyone else. You certainly need to listen to advice, but you also need to trust your own intuition and judgement".
Dawn found Lucy's lost pair of glasses this morning which we have already replaced, so now Lucy has two pairs of glasses. I see that as a little sign that confirms we are right.
2 comments:
Of course you know your own child better than everyone else !You should trust your instincts as with you both looking after her so well and looking out for her Lucy will be fine.She HAS achieved things and DOES respond to things - just because it is not on the same scale as other children does not make it less worthy in fact it makes it more so.You and those close to her will appreciate and value all she does and at the end of the day that is all that matters !! Don't let these people get you down !! Love Auntie Mary
You are absolutely right, we should all treat our children as individuals and be proud of whatever they achieve no matter how small and appreciate their individual effort and also learn to recognise these achievements.
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