As a parent of a chronically ill child, who’s prognosis is yet to be determined, you make many mental deals of things you would do just so that they can have their childhood back and not have to live the unfair/unreal reality that they face.  If they can somehow get better, it will all be okay.  And then, in ways, they do get better, and you find yourself sitting at everyday activities with tears in your eyes, knowing that even though playing catcher in softball isn’t her favorite thing, the fact that she can get up and down, and up and down, and again, is all that matters.

This year Maura has remained in an unmedicated remission, she has continued to drop time in difficult swimming events, given her all on the softball field, all the while smiling, supporting her teammates, and doing her best to be an ordinary kid.  And the part she doesn’t want anyone to know is that she is also dealing with cataracts that haven’t gone away but instead moved into her line of vision causing blurry vision that can’t be fixed, hip muscles so damaged they need physical therapy, and having to mentally navigate wanting to be “normal” when she’s so close but knows it’s an impossibility.  Her struggles are her reality, not mentioned for sympathy, but because one day when she reads this, I want her to know that even though we expected her to adapt that we saw and recognized all the extra work she is doing.

This year was the first time I showed her this post from the night before this all began and she no longer remembers the little girl who said those haunting words to her mom.  And that, is such a gift to me, that deep inside she believes she can, no matter her situation, she can.

Past posts for my girl 2017, 2016, 2015, 2014, 2013