Sadness seeps

I have had a tough emotional week that should not have been tough or emotional. C'est la vie! My daughter turned 6 last Saturday and what should have a been a fun happy day found me entrenched in a deep sadness. Alexandra is autistic and for most of the year, I can deal with it and go about my business of making sure she has all that she needs. I appear to be fine with her autism and have even convinced those around me that I handle her autism well but holidays and birthdays make the deep sadness of her autism come to my surface. Let there be no doubt, Alexandra is a child so complete in her contentedness and so happy in her world and for that I am eternally grateful. It is my pain I am speaking of. Once I knew I was having a girl, I started to dream of all the things we would do together and all the parties we would create for our daughter. She came into the world with shoulder length dark curls and a face of pure perfection. She was the most beautiful thing I had ever seen and it was a love like none I could imagine. She developed normally following or exceeding all benchmarks as they came along. Then at 17 months, the world around us changed and all development stopped. Speech went away, personal contact diminished and she became happiest when left to her own devices. We became simply the purveyors of food and shelter. She had no need for our touch or our interaction. it was the most devastating period for both myself and my husband. At first I believed it was simply down to me having given birth to her brother - a hopeful wish at coincidence. But it was not to be. I lingered in denial for a long time, just waiting for her to snap out of her what I hoped was sibling jealousy, but it was not to be. Eventually after all kinds of false hope we were given the diagnosis that we did not want to hear. Our daughter was autistic. Remove the rug from under me.
It is only in retrospect that I realise how I never gave myself any time to come to terms with this. I never grieved for the loss of the daughter I thought I was having. I simply did what I thought was right and got on with the business of helping my daughter in every way i could think of. There is not a treatment I have read about that I have not either tried or researched. We eliminated gluten and casein but it had no effect on her. We tried vitamin regimes but to no avail. The classics have prevailed - lots of speech therapy, occupational therapy and a bunch of teachers that have been nothing short of wonderful. So our days settle into what qualifies as a routine and the angers simmer way beneath my surface. We came to a place that works for Alexandra and the routine is in place. Until Christmas or birthdays raise their heads.

She is a beautiful girl with a sense of humor. She is tall and strong and completely independent. She is stubborn and strong willed. She loves art and music. She can read and write. She is everything I would have wanted if I could have picked a child. But for that damn autism. The autism that can make life so difficult. It is strange things that I think of and strange things that I am grateful for. I am so grateful to all our therapists and teachers who have helped us in the almost 4 years we have been dealing with us. They are all highly dedicated, patient and warm people who give much of themselves. I am grateful to Mr Clean for inventing Magic Erasers - thank you for getting crayon and marker pens off most surfaces. I am grateful for the bus drivers who ferry my child to school and have given me the sense of security to allow her to be in another vehicle other than mine. I am grateful to other mothers I meet in therapy waiting rooms who make me feel okay when the day I am having is anything but. I am incredibly grateful for my husband who helps in ways he will never know. From the 'go to Barnes and Noble and relax for a while' to helping with things around the house, he never makes me feel anything but a great mother - even when I feel like the crappiest mother in the world. I am grateful to Owen who takes his sisters autism as normal and never makes a fuss when he is getting less than he may be deserving of. I guess I am most grateful to Alexandra herself, who can manage to take my hurt and pain and frustration and complete exhaustion and just take it away with a hug or a smile or a beautiful kiss and "I love you mummy". She has taught me so very much about myself and how far I can go. I love you little lady. My sadness will pass but the happiness you bring me every day of your life lasts forever.