So here's the thing. I dont know how other parents with disable children do with explaining or breaking the news of their child's condition to everyone and anyone who asks them. Super parents.
Its been 7 months since our little boy was brought into the world. This means it's been 7 months that we have played visit to the children's hospital about 3 times a week. it's been 7 months that we've been up and down rollercoasters of news and 7 months that people again and again have asked us how Mango's doing (because they can see something is wrong). Which for me, I understand that from the deepest part of their heart they are asking because they care. In the last 7 months I'v probably told the same story of what Mango has been diagnosed with and what that means more than 1 million times. What have I got to be complaining about when other parents have been doing it for years?!?! Please tell me your secret....
I wonder if I should have a tape recorder and everytime someones asks me that same question, I would hold up my hand signing for them to stop talking, pull out my tape recorder and press play. I'd like to see that happen.
From now on, when someone asks about Mango. I will tell them he has global developmental delay. This means he is delayed in EVERYTHING. I'm sure most people know what it means. It would just be easier on me and everyone that when I say global developmental delay, they will just nod as to say they understand. Countless times have I told someone that Mango has a chromosome disorder and they look at me as if I just told them I went to the moon and met aliens.
What hurts the most is seeing how people look at Mango after they know the untold truth. That look of fear and disgust. There will always be people who can't fathom the love and rewards these children bring with them.
What hurts the most is seeing how people look at Mango after they know the untold truth. That look of fear and disgust. There will always be people who can't fathom the love and rewards these children bring with them.
Are there any Mamma's out there who have been through the same thing? (daaahhh... I know there is) Please let me know what you have done in your situation. Maybe I can do it that way too....
I say what I feel people will understands. For some I don't even bother saying anything. I love (sarcasm) the question "what's wrong with her?" I normally say "nothing why?" It turns the table around and make people think... at least the ones who can think. For family member and friends, I give the name of her syndrome and say global developmental delays. When she was younger people would ask really specific questions about what we thought she would achieve and I would say that we didn't know. I still have to say that now when people ask me if she will ever be independent. I don't know, she has achieved more than any doctors ever thought she would, who knows what will be next. Most people are ok with an "I don't know" answer. It took months before I would talk about it, first I needed to make peace with her diagnosis, accept it than I could talk about it!
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