I hear it quite a bit. Normally people are very nice about it. “You know, most of the people really are well meaning,” they say. Or more often than not, it’s a comment on this site or somewhere in social media guiding me to be more patient with those who are trying to support me with the words that just stung so badly.
Let’s be honest, this blog is full of posts … especially the most popular posts… filled with “Please don’t say this about my child / my experience” type posts. The top five shared posts on this blog all fit in that category: “Don’t tell me to get over it“, “Don’t tell me most of these kids catch up“, “Just wash your hands and don’t argue with me about it“, “Never, ever tell me it’s good for my child to get sick” and “Even if you are a preemie parent, don’t assume we hurt exactly the same“.
Some days I look at that list of most popular posts, and even I think, “Tatum, you are a complete rag. Lighten up. Don’t be so sensitive.” And then I’ll go back and read those posts and I think…harsh or not, it’s really how I feel. The fact that they are very well read posts, tells me it’s also how many others feel. So, I wondered…why? Why am I, and seemingly many other preemie parents, so sensitive.
I can’t answer for the universe of preemie parents…but after some reflection, I can answer for myself. Each and every single one of them comes back to one thing…
I desperately want people to ACCEPT Owen…me…our family and this situation.
I want people to accept that our situation is different. I want people to accept that we make the decisions/requests that we do, not because I’m psycho-mom, but because our situation IS different.
The reason that acceptance is so important to me – the reason that I struggle to let it go and the reason that I sometimes get a really feisty about it is that I want people to…and I really fear they won’t…accept Owen, not just today, but also for whomever he becomes.
Every time someone tells me that it’s okay for my child to get sick, or that I’m too over zealous on hand washing and vaccinations, or that their situation is exactly like ours, or that I just need to move on because these kids all grow out of their issues…those comments tell me that people don’t accept where we are today. And if they don’t accept where we are with a cute, smiley little toddler (who looks “normal” but still has significant needs)…If they can’t accept this boy, then what about the future young man? When he’s a pimply faced teenager, or maybe a somewhat awkward adult, or he can’t run as fast as the other kids or eat what the other kids are eating … will he be accepted then?
When it matters to him. When Owen’s happiness can be impacted by other’s thoughts about him…then will they accept him? Because clearly, his situation…the realities of it…they aren’t accepted today.
I accept that Owen will very likely have life-long differences. I don’t write those words because I have given up hope – we absolutely will continue to push Owen to be the best Owen he can be and the fact is, I think that Owen is, and will be, amazing. I write those words because I ACCEPT it. Because I ACCEPT Owen…with whatever his difference(s) turn out to be…he will be okay. Maybe not everyone’s definition of okay, but my definition of okay and hopefully, his definition of okay. I don’t just love him…I accept him. I want other’s to accept him too.
My biggest hope and dream for both of my sons is that we are able to give each the resources and support to find their own version of amazing and for whatever that version is, he feels accepted. That’s what every parent wants, right? Our kids to be accepted – and ultimately, to accept themselves?
So yes, I know, I can be a rag who is sometimes a little harsh towards people who probably didn’t mean harm with their words or actions. I promise, I will continue to attempt to accept that sometimes, a lack of understanding isn’t a lack of caring. At the same time, I ask that when you hear that mama bear in me roar that you realize behind it is simply a mom who desperately wants her family…especially her children…to be accepted.