"We have a long way to go in terms of seeing how my son is doing," says the mom of a young child diagnosed with Angelman syndrome. "I've joined some Facebook groups, but have trouble putting my true feelings on display. Those feelings being that I'm a big puddle of sad and confusion lately. I realize I probably need to talk with someone professionally, but I would also love to know what other working parents did/felt/tried to get through the early days. Any advice would be helpful right now."
So many of us have been there. My first year with Max was one big haze of sadness, with occasional bursts of sunshine when I let myself take comfort in his cuteness.
I was relieved to return to the office after my maternity leave. I've always enjoyed my work as an editor, and I needed to sink my brain into it. I refused to feel guilty for leaving Max at home with a sitter; I knew I'd be a better mother, not worse, if I had the balance of work and motherhood. Our sitter and the Early Intervention therapists shared what happened during the day in a notebook, and I'd occasionally organize conference calls with all the therapists. I was lucky to be able to work from home on Fridays, so I could take Max to aquatic therapy and use the extra hours I saved from commuting on getting house stuff done.
I found it a relief to occasionally duck out on my own for a few hours, to hang with friends or just wander the aisles of Target and CVS. I readily accepted offers of help from family of friends to do laundry, bring food over or research stuff that would help Max. And I found it a relief to connect with other parents online and learn about stuff they'd tried, and to look into alternative therapies; assuming whatever control I could in a situation where I generally felt helpless offered relief. I also saw a therapist for a few months.
What got you through the early days of your child's diagnosis? Share your thoughts and help another mom.