I think that the difference between mourning and gratitude is all in the story we tell ourselves... don't get me wrong, there is a time, place and need for both, but the goal is to spend the majority of our time in the latter of the two right? Easier said than done some days, absolutely, but when you have this crazy cute girl smiling and giggling back at you, it's pretty hard not to be humbled and have your attitude put in check.
I wanted to share this story with you (I did not write it), maybe some of you have seen it already… depending on the day, it will put a grin on your face, or bring out the tears you’ve been trying to hide, even sometimes from yourself. It is so good! And explains how I feel, SO WELL.
It's amazing... this is just so true. If the trip to Holland did not come with so many dangerous side-effects and pain for my baby girl, I'm confident I'm enjoying Holland much more than I could have ever known how to appreciate Italy :)
She is still on folic acid, previcade, calcium, multi-vitamins, oral steroid (prednisolone) and weekly methotrexate injections given at home… but they have added Plaquenil (specifically for the skin reaction) and CellCept. The addition of CellCept was admittedly a little hard to accept, ok a lot. It’s a transplant patient drug, it' just a lot to wrap my head around.
The taper from steroids is the beast… kick starting the adrenal glands to produce their own natural steroids without causing that flare. It will come, it’s finding the right combination for Taylor. In Dec of 2009 it was too hard for her to climb 3 single stairs and it was really her arms pulling her up anyhow and now she’s doing handstands. Remission is not a question of “if” but instead a statement of “when.”
Think I’ve covered most of it… doesn’t she look amazing??? I intentionally peppered in pictures to help shrug off the crappiness of the situation. Love to you all!!! And thank you for your continued thoughts, prayers, and well wishes - we are truly blessed!!!