The real-life requirements of parenting and care-giving for someone with a disability is incomprehensible to people who don’t. It certainly was to me before I began this journey.
I hope my struggle, self-education, advocacy, heartache, triumph, gray hair, sleepless nights, and tenacity will help others in similar situations. ❤️
Certainty and Desire
We don’t know what we don’t know until we learn what we learn.
This is a frustrating concept for me. I want to have had the right answers sooner. I want other people (doctors, therapists, teachers, family, friends, neighbors) to learn about Fetal Alcohol Syndrome.
I want genuine understanding that translates to more than the superficial “let’s get coffee sometime” which never happens. Or the “you’re such a great mom” which is hard to take when I fear I’m falling short and implies I don’t need anyone’s help.
I want to provide for my child’s needs.
I want that to be less hard. It really doesn’t have to be and it absolutely should not. Yet, it most certainly is at just about every turn.
I’ve learned…
I won’t ever have all the answers before I need them. I will gain the most from my mistakes.
What other people can and will do is beyond my control. I can only make the offering.
Connection is first and foremost. In every situation. With every person. No matter what.
I soak up each drop of happiness. Our small family has an abundance. We prioritize it for each other. Our buckets overflow. For that, I know we are fortunate beyond measure.
The Paradox
I’m feeling raw. I’m isolated. I’m grateful. I’m depressed and exhilarated.
Mostly…
I’m a devoted parent, advocate, and caregiver. Every day.