Our meeting with Maggie on Monday was enlightening... so much information to absorb and think about, so much to plan for the future.
At the moment Eilidh is just Eilidh... a little girl, cute as can be, with a cheeky grin and a devilish temperament. She has a smile which melts my heart and such an infectious giggle. It is so true that children with SMA love being touched and tickled - even thinking about tickling her and hearing her giggle brings joy to my heart! Her sister adores her, that much is obvious, and she watches Niamh with awe and wonderment. She is perfect, but perfect in her imperfection.
Eilidh is perfect in her imperfection. She does not sit steadily or crawl and she will never walk, skip or jump. This is what sets her apart from her wee toddling friends. It is difficult to imagine her future, one with standing aids and powered wheelchairs, and yet here we are having to plan for a future that we can not even begin to imagine. How can we do that?
It's waiting for the inevitable. Waiting for this disability to set Eilidh apart from her peers. Waiting for it to become obvious and it's horrible. I hate waiting. I hate not knowing what the future holds. I hate having to take each day as it comes - I'm no good at it, but I need to learn, don't I?
For the moment we must enjoy each day, enjoy the small things, enjoy the time with Eilidh and Niamh as a family who looks normal - even though we feel far from normal. I must learn to take each day as it comes and I must make sure that I am the best I can be - mentally, physically and spiritually - and enable myself and be empowered so that I can look after my wonderful daughter and my beautiful family. I know though that, first and foremost, I must look after myself... Selfish perhaps, but true: ultimately, however, I want to be the best that I can be for my family...