There is this song that I have heard many times when in the car with the boys. They love to listen to the kids stations on the satellite radio. And this song is on there quite regularly Here it is (it is just a goofy song)...
There is one part to the song that I tend to think about in certain situations. It is the title of this post, "Freeze, wait for it." It signifies to me those moments when you KNOW something is coming. Like today, knowing that tomorrow we are to go into the hospital. Or something that happened twice this week - having a conversation about Quinn's situation and then...freeze, wait for it...the fear look, the comment, the whatever it is that shows that I just scared the person half to death by the reality of my situation.
I am quite surprised with who this happens with - people just like me - my age, working in the same or a similar career as I do, just like me. Maybe they feel the most vulnerable because if it is happening to me, it could happen or could have happened to them. One person this week had the terrified look on their face. The "Oh my God, can that also happen to me?" look. I should note that the person did ask about the situation. I told them and then... freeze, wait for it...the look and then... freeze, wait for it...the comment "Well I will tell you about my experience with the mentally retarded." Oh that is a nice touch. An attempt to distance yourself from them, they are those "mentally retarded" people after all - not my daughter, my sons' sister, a person you love and your heart is breaking for because she has to go through this medical crap that comes from something other than DS.
The second conversation was going well, in fact very well, I almost didn't have my freeze, wait for it moment, but still you better....freeze, wait for it... because you never know. It can come out of nowhere and slap you in the face when you never realized it would come. That is the problem with this, you can become defensive. Then it came...the eventual comment/advice came that "Quinn, unlike normal kids, should receive".... Wow - Quinn isn't normal - that would make her abnormal, then in response I am abnormal because she came from my body. And then that would make my whole entire family abnormal. We are just an abnormal brood of people. I would rather think of us as your typical family who is going through a struggle - we all have struggles, challenges, moments when we are tested. To me, that is normal, not abnormal. The people who never have these things may be considered abnormal.
It doesn't happen 100% of the time. And I know people just don't know what to say. They are well meaning and just don't know. I don't hate them. I can put these comments behind me and still recognize they care, but I hate that these comments effect me - that I have developed this freeze, wait for it method.
I also want to mention that there are also great moments where people just look at you, listen to you, tell you they care, tell you they are there for you, offer to help you in certain ways, are just with you - but it is these freeze, wait for it moments that get you - they seem to get you the most when you are down. Ironically it is called Down syndrome, after Dr. Langdon Down. I suppose people who don't know about where the name comes from may associate the syndrome as ripping your life apart and making you down and depressed. But in actuality it is not the DS that does that, it is more of society's view of disabilities that does that. It is the freeze wait for it moments that does that. Down syndrome actually has been one of the better parts of my life.
Here is a video I found this morning with some cute kids and adults with DS. Enjoy.
19 hours ago