It’s been a while

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I’ve had some emails and messages lately from those who’ve discovered my blog and are wondering whether I am still writing. There’s a short answer to this and a long one. The short answer is yes, I am still writing blog content but lately I’ve been writing it in private mode since I’m just not in the greatest space and I am mindful that no one really wants to read 30 posts about how I am struggling with managing Levi’s health and the mum gig at the moment.

Yesterday I had a really honest conversation with another mum who is walking a similar journey and she mentioned that she finds it helpful to read the not so great posts, because that’s where we all find ourselves so often and it helps to know we aren’t alone. I know for me, despite the best efforts of everyone around me I am feeling quite alone in this currently.

I have found that when things all fell apart initially with Lily and also with Levi, there’s a stirring with people and they scurry to offer support. I am so thankful for the multitudes of people who have made meals for us, prayed for us, came and washed my car, mowed our lawn. It seriously made the world of difference while we were coming home on oxygen with a newborn and figuring out what all of this meant in terms of daily life. I’ve found though, that once the initial storm settles, there’s this silence that creeps in. Everyone goes back to their lives (rightly so) and then we have to work out this new normal that is our life.

The normality hasn’t come so easy this time around. Hospital appointments have been scattered, leaving some weeks with not even a day at home. Communication broke down between teams for a while there which meant that whilst everyone was able to see the issue, there was no clarity in the best approach to fix it. Fatigue has set in and I can’t quite work out whether I feel worse this time physically and emotionally because I’ve walked this road before and I have a fair idea of the forecast ahead of us; or whether I am just soo damn tired from getting the last kid healthy that I don’t have any steam left.

Isolation is a killer. I get it, it’s not a pretty picture here. Its hard, its messy, and often my house looks like a bad episode of modern family where people are crying, somethings on fire (okay I may have exaggerated there), chaos ensues and then at the end of the day we all just fall in a big heap and brace ourselves for another day.

I’ve been really fortunate to find a small but genuine group of people who have kids with medically complex needs. They too survive on coffee, catch ups with like minded mamas and the occasional stiff drink. And while its helpful to have these beautiful people in my world who can say the right things and just listen without batting an eyelid when I retell the story of my child vomiting purple all through my car; I miss the people who were a part of our village before my life went up in flames. I miss hearing about their lives, their jobs and all the things that I valued and appreciated in them. Just because I’ve had to create a new community to support a part of my life; it doesn’t mean I don’t miss the former one that existed.

I’ve had this post sitting here for just over two months. I’ve struggled with whether to share it. There is something in me that cringes at the core at the thought of appearing lonely, because frankly it feels uncomfortable; but it also implies that those currently in my world don’t do it for me, and that’s absolutely not the case. I am just grieving for the life that we used to have. I miss my work. I miss being Sasha.

I’m still working on the answer to all of this. I don’t have some shiny resolution to sign off with. But that’s where its at. That’s where my heart is.

Sasha Fierce

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