It was a day like any other day that started off with promise and ended in tragedy. It’s been a year tonight since Ashley’s stroke. And I have still not sat down to have a good cry. Why? If I let myself collapse as far down as I need to go to reach the depth of the pain, I would be using valuable time digging myself back out of that very deep hole. That’s time I have not had and do not have.
This year has been sad. Really sad. It has been painful to watch Ashley trying to process what has happened to her body with no ability to share, to curse, to sign, to unload her depression.
It has been hard to push her in therapy, to reason with her, to find ways to motivate her to do what her body cannot yet do or does not want to do, encouraging her spirit to not give up on her broken dreams.
It has been physically exhausting: sleepless nights, interrupted rest, transfers, diapering, toileting, lifting, positioning, propping, percussing, feeding, bathing, dressing, pushing, pulling.
And it’s been emotionally exhausting. Writing on my phone since “day one” to help me cope, I look back to find words like “When Doctors Lie.” That is when it all comes rushing back. (There is a 2-year statute of limitations. Trust me. We are keenly aware.)
One year anniversaries are celebrated in paper: discharge summaries, medication and therapy prescriptions, emergency room charts, hospitalization records, medical negligence letters, accessible van bills of sale (yes, plural), dysphagia management instructions, feeding tube care instructions, DHS appeal documents, checks to our attorney, shower chair assembly instructions, wheelchair parts receipts, more wheelchair parts receipts, pool hydraulic lift operating manual, power chair brochures, and lots of Medicare and private insurance explanation of benefits statements.
But life goes on. With public bathrooms we cannot fit in. With parking lots violating the ADA without any van accessible spots. With ableism. And stares. And isolation.
Yes, life goes on. Save the tears for another day. We are down but we are not out.