I will cry as I right this. Let's be clear about that. And not just because some of the differences in our family make me sad, but because they also make me proud.
If you could see me now you would see a chin stuck out defiantly against the world. Head held high. I will always meet your eyes people who stare.
We are stronger in someways, but i am liable to crumble when alone. A bit of a contradiction I know. We enjoy the simple things. Time together.
Special time with a special sibling is so very important. My heart broke yesterday when my daughter told me she loved the time we had spent baking and making, and that she didn't want to go to school, just stay home with me. Her way of showing me how much she had valued that time together. Special sibling has to put up with a lot- Appointments, strange new people in the house, lack of attention, fewer trips out, and lets not even mention the disastrous holiday. She is tolerant ( mostly) but worries about her brother. I hope she grows to be an understanding and caring young lady. I suspect a career in the nhs is inevitable. She already has far too much experience of special equipment. Or maybe politics? Thea would sort them all out!
It has opened her eyes to what other children go through. On a ward chatting and playing with kids with central lines and oxygen, coming to nates groups and meeting the little ones with diverse additional needs, all are hopefully positive experiences. She makes me so proud.
We are currently trying to get support for our family. To enable us to spend time as a couple, and time with thea. Hopefully those wheels are now in motion. We have learned to value so much in life, and see the world with new perspective. But in doing so have lost friends by the wayside. True ones are always there for us. Others have drifted away. It's hard for people to comprehend our situation. Some of that is of our own doing- playing things down, or just not sharing what's happening.
Another change is our need to move. We have discovered that part time hours don't a mortgage pay. And our house is completely unsuitable for Nate. Hopefully this won't be a move far. The less disruption the better. For all of us.
Simple things Nate can do make us all jump for joy, smile at each other, and savour the moment.
To summarise. We appreciate each other :)
A lovely post and so honest. Thea is a wonderful special sibling and they are both very lucky to have such a lovely Mum as you. Xx
ReplyDeleteThank you for such an honest post, you are an amzing mum who gives the world to her children Thea sounds a very compassionate girl which is a massive assest to have.
ReplyDeleteI hope you don't have to move far and things aren't too disruptive
wendy xx
Trying to balance family needs when you've children with special needs is so hard, you've expressed it beautifully. Best of luck with the house search and from someone whose kids are much older, their needs do change, so it's almost impossible to find the perfect house. Me, I wish I'd bought a bungalow in the country xx
ReplyDeleteWhat a really lovely post, I know that chin- I stick mine out defiantly against the world too!!
ReplyDeleteI wanted to award you the Liebster blog award- see here....
http://tiddlerontheloose.blogspot.com/2011/11/thank-you-thank-you-liebster-award.html
Hello. I found you through Tiddler on the Loose's blog.Sending you a hug x
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