You met your new OT today. You were stuck in a ‘worst case scenario’ mood today. You asked your new OT what would happen if you didn’t improve at the NSRC. He mentioned that a long-term care facility would be an option. You could live there. I was appalled. You would never reach your full potential of recovery in a long-term care facility. It would merely be a storage place for you until you die.
I don’t know why he even humored your query. Going along with your worst-case scenario thoughts offered no benefit to you. If his intent was to scare you into getting with the program, he failed. He just handed you another way to get out of our family and not be a ‘burden’ because that is the way your brain thinks right now.
I wish that the medical community would think before they share their thoughts with you. There should be no place for negative thoughts in a rehab facility. I understand that offering practical and safety-first ideas are important but they should keep their negative opinions to themselves or at least share them with your family first before dumping them
I blame the system not the individual for this slip up. Your new OT has no first hand experience with you. If only there was better continuity of care for you. In your stay at the NSRC, you have had two rehab doctors, two different residents and now two different OTs. Only your PT remains the same from the day you got into the NSRC. All these changes in less then eight weeks stay at the NSRC. This seems overly stressful for any patient, let alone someone with a brain injury that has difficulty processing things.
Chris and Terry came to visit you today. Chris G retires from teaching next year. You suggested that you are retired too. “Retired at 45 years.” You said. “No you aren’t retired … you just changed jobs.” I replied. “This is the biggest and most important job you have ever had.”
We talk about Quinn and his passion for gymnastics. I question the sacrifices we have made for his participation. Monday and Wednesdays are nightmarish to get through, largely because Quinn is at gymnastics for three hours after school. It is really hard to get through the evening and yet, get him fed and to bed on time.
You expressed your parental opinion. As always, you look at the big picture of what gymnastics does for Quinn. I know that you are right. If it helps him find and fulfill a passion in his life then it is worth a little sacrifice. The other day, when I was a little frustrated with the crazy Wednesday evening schedule, I expressed to Quinn doubt about whether he should do gymnastics again next year. He was indignant that he should and must do gymnastics next year.
You don’t realize it, but you are still a passionate advocate for our children. That is a very important parental role.
Remembering the positive affirmations you wrote on Tara’s birthday card, I thought that you needed to hear some positive affirmations too.
“I believe in you.” I said at the end of the phone call. “You have to have Hope.”