Wednesday, June 14, 2017

Landmarks On The Journey

We made it through another school year, well the kids more than made it through. They bloomed. 



There is some controversy around charter schools, but the truth is, while not a magic fix-all to our state's education problems, they are a vital part of the solution. And for our family, they have been irreplaceable. 

I try not to brag or overshare their accomplishments because honestly none of that belongs to a parent-they earned it, not us. And awards are not milestones of being a student or a kid, it won't make them successful in having them or unsuccessful not to have to a single one. But, I'm sharing these because they are finding out who they are. 



My son can do math in his head that amazes, he is learning to believe in himself (he was passed over many times in public school as being nothing but quiet, which was terrible) and what he enjoys (construction, planning, daydreaming and math). My daughter has a college reading level and is finding her sense of humor and imagination a big part of her personality. It's the best part of growing up-finding those things you are both good at and love. And I am so proud of them for that and so thankful to have a local school which has allowed that to blossom. It is more work, however. And expensive with uniform pieces, but it is worth it. 

It does feel longer somehow now, the hours which school takes from them. It might be the curriculum is more rigorous, it might be that they are just growing up. But this summer so far all I have wanted to do is hang out with them. I don't miss them being gone so long and so often and I was heartbroken to find my inbox full of school uniform coupons and supply lists already. 

I'm going to try to enjoy them as much as possible. 

Especially because my heart catheter surgery is just around the corner.

They want now to do both my left and right side, but depending on how my next consultation goes, I'm leaning toward just the right. I don't think I can handle more than that mentally, though physically it may be okay. It's a diagnostic test, but an invasive one with real risks. It is, unfortunately, my ticket to the final pulmonary hypertension diagnosis and transfer to the center of excellence in my hometown. I keep telling myself this is my best chance at survival. 

My toddler browsing the heart operation booklet we were given. 

I have written down "10". Like it's magic. Because I hope it is. I need at least another ten years with my family. Ten years to enjoy and raise my children. 10. I need that 10 at least. And though this surgery is scary, I know this is part of the journey to getting my 10. 

In the meantime, I'm hoping my heart and lungs behave.
After seeing MD after MD, I'm both exhausted and starting to be eaten away at the talks of death and illness. I need a break and something else in my life to focus on. Summer makes me happy. It's lovely to have everyone home together and be able to go out and do things. I need more of that. I really do. 

Suffering a terminal illness comes with really bad days. Often they are triggered by feeling terrible, but sometimes it's that someone in your support group passed away, or a care provider hears your diagnosis and cries (thanks for caring, truly, but you breaking down isn't doing much for my morale), or you have to have talks with those you love about what happens when you die. And each time that happens it hurts so deeply you feel like you can't breathe anymore (or, maybe it's actually my lungs, who knows...). 

I'm not a positive-thinking believer (half of that new age stuff appears to be about fighting your emotions or being in denial), but I am trying to study stoicism, and that has helped. I think some ability to look at the bright side or at least focus on goals is still helpful, at least, for me, and in the near future I am going to attempt to make an affirmation board to help me stay grounded on those terrible days. 

My kids' chalk drawings would make pretty lovely affirmation pictures...

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