Sunday, 18 October 2015

Blog 80 - Just 'doing life', as they say.

My last blog post was in February. Where has the year gone? What have I accomplished? What have my children accomplished?
In a nutshell, many things. Some small, some large. Some achievements have been invisible to others around us, whereas others, such as the children's sporting and academic awards, were recognised by the wider community. My award was for bravery, being nominated by a beautiful friend. A treasure.

This school term is the last one, for primary school, for Nick. Last week I wrote on the calendar all of the end of year celebrations and graduation. Look out for my reflection on that in a month or so. I am unsure as to how I'm going to be feeling.

Crouzon syndrome wise, the year has gone well for Melissa and Nick. The plastic surgeon and eye surgeon consulted about Melissa's astigmatism (turned eye) and deliberated over when it could be corrected. A MRI was performed. The plastic surgeon finally made the decision that he doesn't want to move her eye sockets again. If she needs further surgery later on, he'll use other techniques... The eye surgeon, with this information, decided that, yes, he would operate. But he described her eyes as a 'complicated case' so he would be consulting with others about how to perform the surgery. I guess when you've had your eye sockets and eye muscles moved around it would be classed as 'complicated' and even 'unique'... We are expecting the date to be in 2016. There are no surgeries in Nick's foreseeable future. :)

Medically Jessica is fine. Her heart is functioning well. Earlier in the year, her thyroid level was high but after re-testing had gone back to normal. Academically and with her low muscle tone, she has continued to progress. She stops to smell the roses, as they say, every day. Her love of singing continues. Last term Jessica sang Let It Go in front of the whole school in the Talent Show, and did all the actions perfectly. It's a shame everything can't be taught through song.

Yesterday and today, her topic has been 'veins', and where are our veins and what do they do? There is always a colourful array of topics going around in her mind.

A few months ago Jessica was experiencing a lot of anxiety with going to school. She is mainstreamed. Her reasons were unclear but her headaches and sore tummy were frequent. I became all emotional and wanted to pull her out of school and protect her, but that wouldn't have helped our long term goal for her: To be an active participant of the community. Instead I problem solved. Picking up on words she was repeating, I worked out the sources of stress were the playground, Music and PE lessons. On consultation with the school, she was given alternative places to play if she wished, and I purchased ear muffs for noise. Things have since calmed down.

Running off has basically stopped, though in saying that, we lost her yesterday after Church, when she decided she wanted to go back into the church to play the drums...  It is much less stressful to take her out and about.

Jessica is improving slowly in her swimming. Her low muscle tone makes it difficult but she is determined. One day Jess wants to join Swim Club, like Nick has done.

Finally, I am in the best place with my anxiety and depression, that I have ever been in. I am content and at peace. I know how to manage my anxiety and I try really hard to keep my life in balance. My writing has been a wonderful world for me to disappear into, and through writing I have found new friends with a common interest. The pain of leaving teaching, due to my mental illness, is dissolving away. I have found a new purpose for my life. :)