It's a trick question. Nothing you say when it comes up is right, the looks you get from the questioner no matter how carefully you answer will freeze you in your place. It is a horrible question.
I first heard it when Hailey was just a few months old and we travelled to the annual 5 p minus conference. We were excited to meet other families who were experiencing what we were...Families who lived in a world that we now lived in. We sat in a great big conference room with our baby girl in the stroller and listened to the speaker...and he said, 'If someone gave me a magic pill to correct this disorder, I wouldn't give it to my child.' He went on to say that the child was who they were because of the disorder, to "fix" it would be to take away who they really were....
Seriously??? You have to be kidding me, I thought. If someone handed me a magic pill to take this life that we didn't choose away...to take her pain away...to "fix" her...I would give it to Hailey without a thought or a question.
Now it has been over 9 years since the question was first brought up and I think a little differently. I would take pause and see that fixing that broken chromosome would take away some of who she is. It would change the way she looked, the way she thought, the way she laughed, the way she walked...It would take away the experiences that we have had, the people we have met, the road that we have travelled. If I never heard the word cri du chat, five p minus, cat cry syndrome...It would change me.
So the question...Would I give her the magic pill??? YES...I would. I would give anything to hear her voice and to hear everything that she has stored in her head over the last 9 years. I would give anything to see her run through the playground, meet friends, go to birthday parties. I would give anything...
It's not possible though, there is no magic pill...So I'm thinking that it would really help if people stopped asking me the question. It's a hard one to answer and an even harder one to have to think about.
I really hate that question too. I like your answer. :)
ReplyDeleteI've heard that question too. My daughter is not quite four years old. We didn't get her diagnosis until she was two years and three months old. At the time of the diagnosis, I was more relieved to have answers than I was worried about 'fixing' her. But my daughter is on the very mild side of 5p-. She walks, she talks (constantly) she runs along side her sister. But would I take away her weakness? Her struggle to climb those stairs? Yes...because 'fixing' those things wouldn't take away her sense of humor, her sense of style, her sense of self. But thank you for your answer. It's beautiful and you're right. People need to stop asking that question if only because there is no magic pill. There is no way to put back the missing genes. These are our kids and as there is no 'fixing' them, how about we fix the worl in which they live so they're accepted, loved for the amazing, beautiful people they are.
ReplyDeleteThank you for your comments Tommie & Tiffany...I know we have all heard it before and as parents, we have different answers but it is still a question that shouldn't be asked...but it will over and over again.
ReplyDeleteYou posted this on my daughters sixth birthday. 5 years and 5 month ago I thought all the people (all with older children)were mad to say they wouldn't change their childrens cri du chat...I would have done anything to take it away....Now that Evie is six and is on the more severe side..it feels rude to even think it, because I love her and respect her the way she is, even though I have lived with her pains and frustrations and illnesses, I have also lived with her love and cuddles and in some ways her thoughtfulness..However... I still believe her life would be much better without this condition...but there is no way to change it, no cure..I guess none of us can help but occassionally have a momentary 'what if', then return to positive thinking and getting on with life hey..
ReplyDeleteHappy Birthday to Evie! I'm so happy to be connecting with so many people through this blog!
ReplyDeleteI have not yet been asked that question but really got me thinking...I would not know how to answer that. I really appreciate your point of view. Sometimes because I am so overwhelmed it's hard to see the other side and I don't allow myself to think of the "what if" because it just destroys me and. But then I feel like I would miss out on who she is now..I could not imagine how you must have felt having someone ask you that. Great answer!
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