We started our blog on September 19, 2012, a day that is etched in our minds forever. This was the day we were told that the baby inside me has Spina Bifida. He was 35.5 weeks gestation; we delivered at 38. I look back and think, how did I even have the right frame of mind to start a blog that day? And I realize it is probably because I had no idea what else to do, or how to tell people. I remember making phone calls that day and the next few days to people that I wanted to tell personally about our upcoming adventures. I didn’t want them just finding out from a blog or a social media post. In my mind I can replay some of those conversations… I was very matter-of-fact, very dry, very unfeeling. I stated the information we knew, told them what we thought that meant, and our plan moving forward. Any questions? Good, let me hang up so I can go cry.
But the blog, the blog let me put everything down in writing. I couldn’t forget this way. There was SO much information coming our way in those few weeks between diagnosis and delivery, then an onslaught of information over the next few months. How did we manage it and process it? My husband and I talked constantly about it, my mom and I talked about it. Others tried to distract us from it and talk about anything but that. But at the end of the day, I turned to the blog to recapture it all, to reprocess it. Sometimes putting it in black and white allowed me to look at things differently, sometimes it helped to release the emotions, sometimes it felt empowering to educate our readers on something most know little to nothing about.
Then I started reading other blogs from families living with Spina Bifida. I would read their stories, emotions, frustrations, successes. I would see the things they shared, or didn’t, and all along it has been a struggle to know the right information to relay or the best events to share, or the hardest things to talk about. I often find myself in a constant state of contradiction…
The blog has been a wonderful tool to share medical information and updates about Colten. This is great because then he doesn’t have to be the constant topic of discussion everywhere we go, yet those that want to know what’s going on can stay informed. But sometimes, it feels like we are then repeating ourselves when we do talk about something going on, not knowing if someone is reading the blog or not.
We want to raise Colten just as we are raising our other children – providing for each of their varied needs as those needs arise. Yes, Colten does have a relatively higher number of needs, especially at this age, but we do really try to raise him just as we are raising the others. But isn’t a blog about him screaming the fact that “Hey, look at this one! He’s SO special he gets his own blog!”? I’ve talked about converting the blog to more of a family blog, but frankly, our day-to-day stuff doesn’t feel all that read-worthy! Not that Parker and Max don’t do things every single day that are worth just as many joys and frustrations as what Colten does… you see what I mean? Constant state of contradiction!
And what about when Colten gets older? Will he be upset with the information I’ve shared? Will he be upset that he has a blog? Will he be thankful that people know this information and don’t have to stare and wonder? Because people do and people will. One of the goals of the blog is to educate the readers about his specific medical diagnoses and to shed light on how those play into our “normal” life. It’s about presenting a child with a disability / handicap / special need / special challenge / extenuating circumstance / uniqueness (whatever term floats your boat) as a child first and foremost. A child that, just like most other children, will have a life to live – with or without challenges. I wanted to use the blog to educate and permeate our circle of friends and family with Colten’s challenges so that they didn’t feel they had to wonder, so they didn’t misunderstand, so they would accept him fully as Colten, not as “the one with Spina Bifida”. I feel as if shedding light on what that part of our life is like will allow people to see they don’t have to avoid us or him or asking questions.
Along those same lines, there is a “big picture” to this blog. It is extremely sad and true that when some mothers are given a diagnosis of Spina Bifida at the 20-week ultrasound, they are given the option for a medical termination, some are even pushed towards that decision. Without getting into any pro-life/pro-choice drama, I have to say – I’ve met a handful of people with Spina Bifida, and it blows my mind that a doctor somewhere thought that life wasn’t viable or worth living. It baffles me that medical professionals, under the oath of “do no harm”, can suggest that a little baby with this type of birth defect, is not worth saving. Because their legs don’t work?!?! Yes, yes, I know, there are other medical complications but come on, in today’s day and age, with medicine in its current form, I’m thinking this information needs to be presented differently to parents. My hope is that the information we share about Colten’s enjoyable life will help either a medical professional or uncertain parent make the right decision for them.
There is also the sympathy factor. We don’t want people to feel sorry for us. We appreciate the support everyone gives, absolutely. Don’t support us because you feel bad, support us because you love us and want us to be the best family we are trying to be. Support us because you want to help out of a feeling of love and friendship, not out of pity or sympathy. Have you seen this boy? Nothing to be sad about there! Sometimes though, the posts aren’t uplifting. They relay real truths about the situation that we deal with. Not to generate sympathy, more to encourage understanding. But it does sometimes feel like a contradiction of feelings.
Then there’s the inspiration factor. We don’t set out to inspire or be brave. But sometimes, the choices we make inspire others or put us in situations where we have to be brave for our family. I recently had a friend send me a private message after another blog post and she mentioned how what I wrote was what she “needed” to hear that day. This family is going through a medical mountain that I cannot even begin to fathom how they have the stamina for it, and just by simply doing what they are doing, I am in awe of them. I’ll share a line from her message, as it states so well how I think all of those blogging feel and how all of those reading feel:
“Thank you for being brave and sharing your story. I know that you probably don’t think it has much to do with being brave or strong and that you are just doing what you need to do, but I consider you to be brave.”
And she’s so right. So often we parents are so darn scared of making the wrong choice and ruining something about our kids, special needs or not. I doubt any of us feel brave. Although we probably all think our kids are pretty stinkin’ brave! But the reality is, we are all brave every single time we make a decision about how to raise our children, or what to do to help them along in life – whether that thing is a surgery, therapy, tutoring session, or what to eat for dinner. The fact that we are making a decision instead of simply avoiding it or avoiding them, makes us all brave. And I’m hoping my friend doesn’t mind me sharing a bit more from our conversation because her husband said it better than I just did… “…people think that we are so brave or have so much strength… it is actually that we make little choices every day not to let cancer win”. And that, that is so true.
And so, because I refuse to let Spina Bifida win, I choose to continue blogging. To educate. To share our story of people winning over disabilities.