Monday, April 16, 2012

Please DO NOT shut up about your perfect kid

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!
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3 comments:

  1. EvieApril 16, 2012 at 7:51 PM

    Paulinha querida, nossos filhos são sempre perfeitos, como vc diz, dentro dos nossos conceitos e expectativas. Tenho 02 crias, como sabe, distintas e cada uma com suas perfeições, dificuldades, limitaçoes. O mundo estabeleceu os criterios de PERFEIÇÃO e quem sou eu para mudar isso, mas façamos o nosso mundo! Gabbie tem olhar de anjo, e vc que convive com ela, e ja passou por 2 outras maternidades, sente e percebe amor na sua cria. Logo, isto é perfeição sim! Nao tenho duvidas da sua capacidade de saber lidar com ela para a vida que lhe foi presenteada. Saiba que nao vejo nenhum ser como incapaz ou coitado neste mundo. Tive uma filha acidentalmente queimada aos 4 meses de vida e todos os dias, que a via na UTI, sob sedativos fortíssimos, eu via no olhar dela a força de viver. Me sentia grata a Deus, por me dar tamanha responsabilidade, pois nao sabia como ela ficaria fisicamente, mas como quer que fosse, eu tinha a missão de ensina-la a usar a essencia para estar no mundo e nao apenas a imagem que o mundo esperava dela. Voce foi escolhida para cuidar da Gabbie e traze-la ao mundo, porque é capaz e com certeza, é uma escolha ideal para que ela conquiste o espaço que lhe foi reservado neste planeta. Seu nivel de entendimento, esclarecimento, apoio de todos nós já sao os instrumentos para o progresso da pequena. Conte com essa tia baiana doida que ela tem se e quando eu puder lhe ser util. Adoro crianças, sao o símbolo do Divino em nossas vidas, logo, sao sempre perfeitas!!!

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  2. Leon HigleyApril 16, 2012 at 8:12 PM

    Paula, I am again struck by the wisdom and wonderful perspective you bring to rearing all your children. After Addison's suicide attempt and his long fight against addiction, I take joy in every time I get to see him still alive and still in recovery. If perfection is having no flaws, or no flaws in the eyes of others, it isn't an end to strive for, as far as I can tell. One of the most destructive forces I see is shame, of being different or failing or being less than someone else. I want to celebrate not only my children but all those I know and love. Mental, emotional, and physical disabilities come with being human and I think it is our efforts to rise above our own limitations and past the limitations of others that ennobles our time on Earth.

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  3. AnonymousApril 17, 2012 at 3:24 AM

    Paula, a maior perfeição que Deus nos poderia dar é a dádiva de ser mãe e amar nossos filhos do jeitinho que são. Que Deus abençôe todas as crianças, sempre perfeitas em espírito, que é o mais importante!
    Alessandra

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