Amidst all this is a parallel story of the author's other child diagnosed with a rare genetic disorder and the struggles this family and child go through. Familiar territory here and in fact the main reason I initially started reading the blog. It's not fair. Good people (like this family obviously are) should not have to struggle. In fact nobody should have to struggle like this, including me and my family. But as I say often, it is what it is, and we deal with it all one day and sometimes one hour at a time. This family appears no different in how they cope, heartbreaking though their situation is.
Another blogger and someone who has become a very good friend ( beatingcowdens.com) talks this week of what she can't control in her life and what she can choose to do. It seems to be the mantra of people who need a framework to cope. When my daughter asks " why me? " I've tried to teach her we have two choices. We can either sit and ponder and feel sorry for ourselves OR we can just get on with it! For those of you who read my last blog and laughed at the doctors names, that is one way we have devised of getting on with it. It's hard not to have a smile on your face when talking to someone you've secretly named Dr Sexy Pants!!!
Next week it's my turn to just get on with it. Yet another review date looms and a hot date with an MRI scanner. No sexy pants here just noise I'm afraid! I actually hate MRI because I'm claustrophobic but my Cowdens condition just doesn't give two hoots about that . It's a real case of get over it AND get on with it. I'm planning something nice after it's over though...a little reward for getting on with it.
I actually used to have that saying up in my classroom when I was teaching. The kids ( with a bit of steering from me) came up with it. They used to come up with every excuse under the sun to be disengaged or off task. Some were quite sad reasons, but we all agreed that at school we had to try and focus and get on with it, if we were to break out of the rut many of them already found themselves in at such a young age.
Maybe the other reason the random acts blog touched me is because I have always taught my students and my daughters the benefit of doing something good for others when you feel life has been too hard on you. Over the years my students (with sometimes horrific family backgrounds), have joined together to run fundraisers or other events and for a moment the sheer act of being busy, doing something for others, takes their mind off their own problems. I will never forget the joy on a group of sixteen year olds faces when they produced a number of hampers for mothers in the community, who for various reasons needed a treat. Each one of these girls could have done with a treat herself, yet here they were performing random acts of kindness and forgetting for a minute about their own situation...and loving it!
So really I've had a big reminder that sometimes I just have to get on with life because its so easy to get bogged down, especially when going through medical trauma. As of now I am starting my own private random acts of kindness mission to help me get on with it ie get on with life. If I
can't wave my magic wand and cure Cowdens or my daughters brain I can at least do some good while waiting for others to do it for me. As always I also have the greatest trust that it's all in God's most capable hands.
Till next time xxx
PS- Please share this with anyone you feel may need a lift ( or a kick up the bum ) and also do read the blogs I have mentioned. Amazing people!
PS2 - Do let me know what you think xxx
Very nice post. I love this. What is it about teachers and Cowden's Syndrome? :) I am a substitute teacher. :)
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