Pretty soon here, we’ll be hitting our 9 year D-Day anniversary. In the beginning, “hope” looked vastly different than it does now. A newly diagnosed mom recently wrote to me and said:
“I haven’t read a single thing that has inspired me or given me confidence, as much as anything can with this ridiculous syndrome, but reading your blog has been heartwarming and given me hope that if you can do it, I know I can and I will be alright on this path despite the complications heading our way.”
*Standing ovation* If that ain’t the truth!
This made me reconsider what we consider “hope” to be. And how do we know when we’ve found it? This was my response to her…
Yes…hope…in the beginning I found “hope” in all the science stuff. In the belief that she would be cured. And it actually just stunted my grieving process by many years. Because the real hope is the fact that we have the ability to parent these kids. To lift them no matter how big they get. To fight with insurance companies like a badass and teach doctors things they never learned in medical school. This disease will make you what the medical community calls an “expert parent”. You’ll grow muscles – figurative and literal. Your capacity for empathy for the pain others experience will open you up like a flower. The ability to know that kindness matters because other people you encounter may be fighting battles you know nothing about.
SO. MANY. THINGS that would have bothered you in the past just don’t matter anymore. Lots of parts of life that we found hard before get easier. Because when you deal with Rett syndrome every day, getting rained out of a concert, a dead car battery, missing a party, losing your keys, having a bad hair day…those things are hardly the hardest thing you have to deal with that day. The script gets flipped on parenting. You had this kid thinking that you would have to teach your daughter about the world. And now you have to teach the world about your daughter.
In the Rett syndrome community, you’ll encounter both cynical people AND positive people. Judgmental people AND those who hold space for others’ pain. Assholes AND saints. Insecure bullies AND confident cheerleaders. But as you meet people and connect, you’ll soon find “your tribe”. And some of them will just be in the disability community at large. Because people raising kids with cerebral palsy have many of the same struggles we do so they can be a valuable part of your circle.
And while we’re talking about “your circle”…it gets smaller. We lost friends when Grace was diagnosed. People who just couldn’t get on the road with us because its too hard. And it changed us. The Halfords were suddenly not the go-to party people. Shit got real. And many folks just aren’t in it for that long haul. But you’ll start to meet people who didn’t know you before Rett. And to them, the new you will be normal.
And while we’re talking about “normal”. You will find a new normal. Diapers forever will become normal. Seizures (if she has them) will be normal. Wheelchairs (if she needs one) will be normal. And everyone will marvel at what a hero you are, but to you? It will just. be. normal.