I get a lot of questions from those around me asking “how do you do it?”
I’m always perplexed by this question.
How could I NOT do it?
How do I love my kid? Seriously? Have you seen this face? What’s NOT to love?
How do I survive with little sleep? That’s easy. Caffeine. Lot’s of it.
How do I survive the worry? A therapist/friend that comes to visit once a month. Even then the worry over finances, Parker’s health and the latest BNP results still leak through the edges of my guard. It overwhelms me on a regular basis. I do a lot of praying. And hoping. And I spend at least one day a month in the Temple. I’ve found this last strategy to be the best when the going gets the toughest.
My house isn’t always as clean as I’d like it. Dinners aren’t always as grand. And I have way more great homeschooling ideas than I have time to actually implement.
I certainly don’t do it all.
I’m often a flake these days. I start things and then can’t finish them. This drives me CRAZY. A Type A Mama ALWAYS finishes what she starts. And finishes it well. Unless you’re a Type A Mama to a medically fragile little boy with special needs. Then you drop what ever you’ve started when your kid gets sick, or his heart rate goes wonky. To survive being a special needs Mama you learn that you are limited in what you can do while juggling the balls that keep your kid breathing.
You have no idea how hard this was for me to learn. And sometimes I even have to learn it again. And again.
‘No’, I can’t do that right now, could be one of the most important sentences a Special Needs Mama can know. If you can’t utter those words quite yet make yourself a sign:
No I can’t (fill in the blank) right now. My priorities must first be to my family and my medically fragile child with special needs. I know you understand.
Is it worth it?
You bet it is. In spades. The love, the joy, the lessons I could never have learned any other way…..make my life as a special needs Mama something to be thankful for.
So, tell me about YOUR life as a Special Needs Mama……