Sometimes a Transition will have an Unexpected Effect
- Twenty-eight years of advocating. Always searching for the best solution.
- Twenty-eight years of paperwork.
- Twenty-eight years of taking things one day at a time.
- Twenty-eight years of bathing someone else, brushing someone else’s teeth and hair.
- Twenty-eight years of trying to avoid meltdowns.
- Twenty-eight years of being tired. Literally.
- Twenty-three years of hope and optimism.
- Five years of fear, anxiety, uncertainty.
- … then a vacuum
Autism, Blindness, and Developmental Disability. A challenging combination. Finally, a solution; a plan in place. All the years, all the effort, all the waiting…over. Hooray. Jessica’s WAIVER was finally approved and the budget was in place. A caregiving team had been hired. A good transition was on the way. What a relief! I feel really good about what this means for my own life, health, and career. But also, I am relieved for my other two children and their future.
Transition – I thought this one was going to be hers.
I am happy for Jess. She has a plan. She is happy. Each day, she announces she is going to work to babysit her niece. It seems she will breeze through this transition. What an amazing, full-circle kind of turnout. Jessica’s newest caregiver: the daughter of Jessica’s first paraprofessional, named Jessica after my own Jessica. I was even in the hall outside the delivery room when she was born.
Everything has fallen into place. Jess has a regular schedule. I can now concentrate on my work without any interruptions. Maybe now I won’t be so tired and stressed. Jessica will have “her own life” which is what she has told me she wants for quite some time now.
Before starting our new routine, Jess and I took a trip to Florida as a “team”. Jess likes to refer to us as a team when just the two of us go do things. I try to grin and bear it as she chatters incessantly the entire 9-hr drive. I can’t seem to pay attention (can’t imagine why), but get cues to say “yes” and “no” after ever third or fourth question. The first night in the tent, after Jess had almost talked herself to sleep and I had just dropped off to sleep was when the first, “Mama, I have to go to the bathroom,” was said. Oh yeah, how could I possibly forget this is why I don’t like camping with Jess. I begged for a few minutes of sleep. I begged her to wait. But no, she had to go.
This scene was repeated each night. A couple of times, twice in a night. After begging for a few more minutes of sleep each time, I accept it is what it is and I have to take her to the bathroom. Period. I had to get over it. Each time. I truly did enjoy spending the one on one time with her though.
We cut our trip a couple of days short. I needed some solid sleep, and needed to get back to work. Jessica was excited to start her new schedule of babysitting her niece. Then, the unexpected. Confusing. A really bad mood crept over me and lingered. Why? Things were settled like we had wanted it. She was busy and happy. I was focused and productive with work. The house was quiet and calm.
Maybe too quiet. This transition was not what I expected. There was a calmness occurring day after day that I hadn’t experienced. An emptiness that I hadn’t thought ahead to. It is not bad, just different. I guess I am just not used to being able to count on a routine that doesn’t include constant anxiety, tiredness and struggle.
I’m working on adjusting to the daily absence of the dynamic of Jessica’s being. At this point, being relieved of that constant responsibility just feels odd. The unexpected transition is going to be mine.