Today someone asked me “How do you do it, how do you cope? You make it look so easy.” And I realised… we paint a picture to the world out there and they only see what we want them to see. Almost like the media, hiding some things and highlighting others. This lady also has a child with special needs, and just like all of us, she sometimes feel that it’s just too much to handle.
And I realised… I am authentic yes, but I only cover half of my emotions, half of our stories. I’m blogging and talking about the good stuff, the things people want to hear… or the things I thought they want to hear. But today I decided, some people need to hear the not-so-good stuff. They need to hear about the days that I want to stand on top of the roof and shout “I hate Spina Bifida” – they need to hear it or read it because it will make them feel less alone. And after all, one of the main reasons behind my blog posts are to support and comfort and inspire other people.
So today I’m covering my recent not-so-nice chat with Anika, our 5 year old daughter. I was putting her to bed the other night, and she asked: “Mommy, was Reuben (her 3 month old brother) also born with a hole in his back? Will I still crawl when he starts to walk? Will I ever be able to walk?” And there I was with a mouth full of teeth… blown away and speechless. On the one side I don’t want to create expectations which will leave her disappointed, and on the other side I want to teach her about our awesome God who can make anything happen. So I told her that some people with Spina Bifida can walk and others not, and we will have to see, but if she never starts to walk she will be fine and she will still be able to do some sport, go to school, drive a car, have a job etc. Then she asked me: “But why was Reuben born without a hole in his back? And will I have to wear diapers forever? And will the children always tell me that I’m a baby because I wear diapers and crawl?” Hmmm… so the questions didn’t get easier.
It was one of the most difficult discussions I’ve ever had in my life. But I assured her that she will be fine no matter what. We talked about the (divinely) different opportunities she has and I told her what she was good at, I told her to focus on what she can do. We talked about other kids who can’t even talk, sit, hear, see or breathe on their own. I decided to put her situation into perspective – it doesn’t take the ouch away, but it helps with the day-to-day coping strategy!
After all – why were we created? Why did God put us on earth? Was it to be able to walk, or to be continent? Or was it about something bigger, something deeper…I’m sure, without a doubt, that you can make a difference, testify and go fishing for Jesus in a wheelchair – no problem!