Anonymous wrote:I mean, you just have to find a way to make it work. When DD #1 was in early intervention, we were told by a multitude of doctors and therapists that she was “so smart” and would catch up. We had Kid #2.
Then by the age of 3, DD #1 had a genetic diagnosis that meant profound intellectual disability. She didn’t sleep through the night until she was 14 years old. The sleep deprivation was horrific and I’m sure has taken years off our lives.
Meanwhile, by the time DD #1 was 20 months old, she was diagnosed with brain cancer. We spent 2.5 years getting her through treatment which included 2 brain surgeries and 16 months of chemo.
What helped. First, an amazing husband who isn’t afraid of hard work. Second, a commitment to our marriage which included a few sessions of marriage counseling after each diagnosis after each diagnosis — which was really more like two for the price of one coping skills discussions and realistic planning. Third, money to outsource a lot of stuff. When you have been changing diapers for 16 years, it is helpful to outsource a lot of care so you aren’t pissed about who changed the most diapers.
I am so sorry for your family’s hardships. Thank you for your perspective.