Today I was asked/told
"I'm not sure I understand the purpose of posting this photo."
along with asking about his schooling, what he can do and what he cant do in regards to the photo.
and this is the photo in question.
Now usually im an oversharer. I share, share, share, type, type, type, photograph, photograph and photograph. But this is something I've never shared. Nothing I've never done. It just didn't seem like mine to share. My choice to show.
But with it being Spina Bifida Awareness Month and all...I asked him. He's talked a lot about showing scars and sharing things with close friends. I thought he might be ready for it. And he was. He didnt bat an eye at it.
It was a big moment for me, for us, for him. And so when I clicked on facebook 700xs to see what the reaction would be to put something so "private" out there I was slightly shocked by the response of one.(especially because it was someone with Spina Bifida)
So I want to respond here. In detail and with some thought.
This picture means a lot. It was snapped quickly with an iphone and uploaded in minutes, (because for real 8 year old boys have no patience for lighting and photo shoots) But this picture very well could have taken me hours, days and weeks to plan out. I could look at this picture so many times because its so much all rolled into one.
For one the fact that he would willingly share this image with the world shows me that he's in a good place. It shows me he's not ashamed. He's not ashamed of his scar. Of what his body looks like and how its different. It shows me I'm in a good place about it. Spina Bifida can seem like a shameful diagnosis for the mommies because so many people are misinformed about folic acid keeping spina bifida away (not true, not proven, many mommies take folic acid months before their pregnancy and their babies still have spina bifida) I actually had a doctor ask me once why I didnt take my prenatals because clearly with Toby having spina bifda that was a fact. (first and last appointment with that doctor,) But its always my fear, always in the back of my mind. that people think its my fault. So to put it out there says, a lot.
It shows me his courage. This scar isnt just from his orignal back closure surgery at 1 day old. This scar isnt just from his 2nd back closure surgery at 2 weeks old. This scar is also from his tethered cord surgery. Moving on from that surgery. Healing from that surgery. Walking after that surgery. That all took courage. It shows me my courage. I'll never forget the first time they took his bandage off to show me his back as a few day old baby. I almost passed out. I felt like a coward. The room was spinning and I had to go sit down for a minute in a chair, but I didnt stay there. I didnt stay in that chair. I stood up, walked over and learned how to do dressing changes on his back. It took courage. When I held my 2 week old and had to hand him back over moments before we were about to take him home from the NICU because I felt spinal fluid leaking all over his back, knowing this meant a longer stay and another surgery. That took courage. I was full of fear feeling that fluid on me, but we handed him over for another surgery. That took courage.
It shows me hope. When we saw his spot on his back at our 20 week ultrasound and first heard the words spina bifida we had hope. When Toby came on May 19, 2006 all we had was hope. We clung to it. When they took him to the NICU and I didnt get to hold him. I had hope I would hold him soon. When he had his first surgeries I had hope he would be okay. When he had his tethered cord surgery I had hope that he would walk again and be even stronger. Hope that better days would come. That it might not be so hard. Seeing the scar reminds me that hope is always worth it. Even now in these tough days. I need to be reminded hope is worth it.
It shows me strength. Toby's body has fought. It has not beaten him. Toby's body has been through more things than I care to imagine. Toby is a warrior. I try not to glamorize spina bifida or say its more than what it is. But for real people. Check that stinking scar out. He's a fighter. He's got some kind of awesome strength. I'd be a fool to overlook that. The scar is a sign of everything we have fought against and yet everything that we have also embraced.
and more than anything else
It speaks of life.
This surgery. Those scars. Those saved his life, and if that were the only thing that I could say, then that's enough for me.