The very first picture of Beanie holding Lamp.
(Sigh...I don't know why my font is so small and acting weird)
Today's question comes from Molly, a very dear, yet fake internet friend. (That's a joke I should probably let die, but the truth is she is very dear). And the second questions is from anonymous.
Molly: Here is my real question: If you could create the most wonderful, reasonable, happiest outcome for Lamp's future, what would it look like? (Without taking away the way her body is now).
Anon: How do you keep from being angry at God for not giving Lamp a normal little body? Or maybe I should ask, do you ever feel angry at God? I know I do. And that video of Gabe... tore me up! I don't understand why God does this to people and it flat out makes me mad.
Again with the good questions. Molly first... If I could create....create a wonderful, reasonable, happy outcome. I like this question because I do think I will have a hand in creating her future and I should be thoughtful about it. Of course I want to be thoughtful about parenting in general, but with Lamp there are some unique considerations to think about. Although my ideas are scattered, here it is... My thoughts fall into 2 categories...the creating part, and the outcome part. The means and the end. Means first:
Right now this is all so new. This world of special needs, limb clinics, appointments, wondering what will happen and how and when...at some point I want this all to die down. I don't want to be known as the family with a daughter with abnormal limbs. I don't want Lamp's condition to be our entire family identity. It's not fair to her or to anyone else. Yes there will need to be special considerations made in her behalf, but not to the point that it takes over our lives completely. (Sidenote: I think there are some kids with illnesses or diseases that the family is more or less forced to make their life revolve around it. My heart goes out to those families and I in no way look down upon them. I feel as though we have more of a choice in this area.) So in short, I want her life to be very normal. I want her to be independent and I think how we treat her at home will play a large role in that. I also hope that her home will always be a safe place for her. I want that for all my kids, but especially for my little Lamp whose differences will be so noticeable and therefore could face more difficulties socially. I want to encourage her in wherever her interests lie. I think this little lady has got spunk and I hope I don't ever try to hold her back--but at the same time be a steady voice of reason and proper encouragement. I know that may not be the most popular thing to say, but I believe in dreams and being realistic. I know that's rather vague, but I think those things are my general ideals for her upbringing.
So what does my happy outcome look like for Lamp? I don't know...that's probably even more vague. In my mind there's no reason she can't live life to the fullest. One thing I really think about is that I want her to have good friends. While I really hope her peers aren't mean or unkind, I also don't want them to treat her like a pity case. I hope she has good friends in her life who see beyond her limbs and truly form a bond with her. I want her to know her value without it always being about her disability, if that makes sense. In the same light that I don't want our family identity to be about her and her disability, I hope her own identity isn't just about her limitations. I know some of it will be about her limbs and her body because like it or not our bodies are intrinsically tied to who we are, but I hope people see her as the multi-dimensional person she is and to treat her accordingly. I can't give any specifics like I hope to one day see Lamp get married and have a family of her own." That may or may not happen. (Which is the case for people in general, no?). I feel like my hopes for her are about the same as they are for Beanie. I hope that she's happy. That she has a happy childhood with the knowledge that her family loves her. I hope she makes goals and dreams and finds a way to pursue them. In specific regards to her body, I hope she figures out ways to do whatever it is she wants/needs to do to lead the most regular and independent life. I hope that she feels at peace with her body and the life it allows her to lead. While I don't consider this imperative, I think it would be cool if she felt she had some divine inspiration as to why she was sent here with the body she has--not in a why did you do this to me? sort of way, but in a what is the purpose for me and those around me? What does this body have to do with my life's mission?
I hope that answers your question. Thanks Molly, you're a gem. And as a plug for Molly, please check out her amazing website A Good Grief, and be sure to read her story.
And now anonymous.
No I'm not angry at God. If I were to be angry at God for Lamp's body, then I'd have to be angry for anyone whose body was ever disfigured for any known or unknown reason. And if I was angry at God for disfigured bodies, then I'd also have to be angry at Him for diseases that ravage bodies and take mothers away from children and children away from mothers. And if I were to be angry at God for diseases, then I'd have to be angry at Him for car accidents, freak accidents and acts of nature like volcano's, earthquakes and tsunami's. And if I were to be angry at God for accidents than I'd have to be angry at Him for intentional acts of violence and war where innocent people are maimed and killed for no reason at all. I hope that doesn't come off as self-righteous, the truth is I'm just not angry about it and perhaps that's a blessing in and of itself. Yes there are times when I don't understand how God can allow for certain things to happen, but Lamp's body isn't one of them. When I do start to think about the calamities of the world and the abundant unfairness of it all, I try to take myself out of the earthly world where humanity is the highest and noblest goal and place myself in the heavenly sphere where Godliness is what's at stake and somehow it brings in a much needed sense of balance and purpose.
Aim at heaven and you will get earth thrown in. Aim at earth and you get neither--CS Lewis
Thanks again for everyone's questions. It's been fun answering them and I hope you have a good weekend!