I have been thinking about what I wanted to say in this post for a long time. As you can imagine, I have been reading a lot about arthrogryposis, chromosome deletions, and other disabilities, and once in a while I come across some texts written by parents of children with disabilities. Their postings are most times very enlightening and definitely help put everything in perspective. A couple of these posts were about "what they wished their friends knew" and one of the things they would like the friends to do was to stop talking about their perfect kids. I didn't understand that very well when I first read it, and I guess I still don't. I can try to understand the pain that they feel when hearing about the perfect or above normal development in the other kids, the pain in knowing their kid will never be able to achieve that. But as much as it hurts hearing and seeing some things, I don't want my friends to shut up about their perfect kids just because mine is not going to be able to do what theirs can. My daughter is still perfect to me, as every child should be in their parents eyes. She is the most amazing baby I know, in her own way. So why would I stop you, my dear friends, from talking about all the joys your children bring to your life? All the little and big achievements? I should be the first one to recognize little achievements - I find myself more often than not with watery eyes because of every little thing Gabbie does.
So please, my dear friends, DO NOT shut up about your perfect kid, tell me every single detail of every single achievement. And that goes especially for you, my sister, who has a baby 7 months younger than Gabbie, but who now is able to do so much more than her in terms of motor skills. I don't want you to ever feel like you should not say something in front of me, I want to know about all the standing up on her own, the little steps she is able to make around the sofa, everything little step and every big milestone that my niece has accomplished. I want to celebrate the milestones with you, please don't take that away from me. I am not going to say that it doesn't hurt to look at my own kid and think that she may never get to experience that milestone, but I will get over it. I am celebrating every little one she gets to experience, and no one can take that away from me.
Going back to the parents that want us to "shut up about our perfect kids", the only way I can interpret that is that even if you think your kid is perfect, they all have imperfections. I had 2 "perfect kids" (whatever that means) before having Gabbie. And yes, they were (and still are) perfect, always ahead of the curve, smart, beautiful, just perfect! Or are they? Every human being has virtues and vices. No one is perfect. I am not perfect and neither are your kids (or mine!).
Bottom line is I don't have a problem accepting my daughter's disability, and if you are going to be measuring your words trying not to offend me, then YOU are the one who has a problem with my kid's disability. And I am humbly asking you to accept her like I do, and be a good friend and celebrate her with me, the same way I will celebrate your children!