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Day 37

It’s easy to fall into a state of despair and wallow in it which was thee path Lochlan was on today. Screen time was a good tool for distraction (this coming from the once anti-screen, and more recently screen time-limiting mom). Luke joined him for a large chunk of the day and as the age/ developmental gap widens between brothers, TV time is one thing that helps them reconnect, share and bond again. With Lochlan still being limited in mobility it’s not like they can do the things they normally would (run and play and bike and climb trees etc), so finding some common ground has been much needed. Luke is trying his best to be a supportive big brother, but he’s also 12 and the adolescent urge for independence and more “grown up” activities puts a damper on the shared indoor games (playing Lego and nerf etc) that the boys normally would do. They will find their way again once strength and mobility returns.




Lochlan told me today that it all doesn’t feel real; that when he is at the hospital and doctors and nurses are doing their thing he feels like he’s not himself and that in his mind “Lochlan is healthy and normal, back home”. He said he just wishes for his old life back. It was good for him to express those thoughts and emotions but I always try to encourage him to put a positive spin on things. I told him he may never have his old life back but he gets to LIVE today.



Later his powerful mind let fear of needles and bloodwork take over. It was as if he needed something to be the focus of his upset and fear and needles were the focus today. I tried to be empathetic but at a certain point I had to stop treating him like he was sick, and remind him that he’s done it before and will have to do it a million times more but there are kids who get multiple needles every single day. He’s not special or alone in getting pokes, unfortunately . But he has the choice to let the fear of Monday ruin each and every moment from now until then or he can choose to live this day we’ve been blessed to have been given. One step at a time, not 5 days at a time. He’s not powerless, and each day he gets to choose his mindset, and that’s is true power.

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