I am just shattered today. I am trying to do right by you... and I have no way of knowing if I'm winning or losing right now. I spent the evening surrounded by beautiful, strong, passionate advocates working together to make opportunities happen for you, and all our friends with different abilities in MN.... only to be drawn back to your care to deal with your most basic need: FOOD. I had to bail out on something awesome to deal with something completely bullshit.
We have lived in gut hell for 3 years now... my entire world revolves around keeping your tummy happy. We have slept (and not slept) together for literally 100s of nights in the hospital nursing your system. We try, try again, start over, try again constantly to get it right. And now... when we've finally found something good, we aren't supported by an acclaimed institution, and the clinicians who are a part of your care are silenced by outdated, ridiculous, and frankly discriminatory policy.
I stood my ground today. Faced with 2 options, neither of which are in your best interest... we went with our gut and asked for a transfer. Both your dad and I agree... this was a terrible admission. Having a sick kid is stressful... having to deal with THIS and a sick kid is heart-breaking. We are enroute to our beloved Sanford ... and we have faith they will take excellent care of you (and us.) Closer to home is always better anyway, right?? I will continue to push for you, #tinyfighter
. I will not let "always have, always is, always done it that way" dictate your care. I will always go with my gut. And I promise... somehow, someday we'll figure out your sad tummy for good and make all the owies go away. Until then... curl up with me, take 1000 selfies, and watch whatever Glee videos you want. I need the snuggles just as much as you do... maybe even more.
I love you to bits, Little One,
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