Tonight felt wrong.  We went to bed with a child who could not walk or get up from the couch.  We were unable to receive medication due to a holiday, we continue to wait for a prior authorization for another, our incredible doctor has fallen ill herself, and we are just plain tired.

We are tired of feeling wrong and tired of not knowing why.

We seek answers but find that our decisions can be wrong.

Our hope drives positivity, but it too has a breaking point.  Sometimes our hope overshadows the truth.  Sometimes the truth takes a hold of our hope.

A morning judgement call felt wrong.  Instead of fixing it immediately, it was an all day point of worry and concern.   If anything, we always trust our instincts and feel we do right by our child.

Today, we were tired and tonight we are afraid.  We were blinded by what we hoped we saw and scared of what no one can tell us.  We feel it is wrong that the biopsy results have still not been conveyed to us.

Our medical team supports us and we are incredibly grateful to them for that care.  We are grateful for our committed doctors and their evening responses to our concerns.  We just don’t feel they know enough to ease our fears.

That feels wrong.

We are not always sure what is wrong, but we certainly wish we could make it right either way.

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