31 for 21: Day 30

A couple of days back (when writing about your speech) you said that sometimes DS sucks. In what way do you mean that?

First of all, I must say in case you just googled and clicked in here that the advantages faaaaaar outweighs the disadvantages. And like most of you know, having Vince really did not change us as a family. We still do things. We still go on vacation. We still hang out and go to restaurants. We still travel. We still are a ‘typical’ family that eat, sleep, play, and take baths without reflecting over DS. We both still work full-time jobs. We are just a regular family who just had to rearrange OUR own thinking a bit and had to learn a little more. I am forever thankful for what we have learned in the last 4.5 years, and I am excited about the future and what Vince will show the world.

With that said, here are some of the struggles:

  • DS can suck when you  have to stand up against society’s stereotypes.
  • It stings in your heart when people use the word r*tard/b*hinderte/m*ngo as a synonym to stupid.
  • Or when you have to go to a Dr like we did in May when we had this experience go down.
  • It sucks that in order to get some of the help/therapy we need for Vince to grow up as the most individual (i.e less cost to society in the future) he can be we to downplay what he actually CAN do. All applications focus on how little you child can and this is very depressing. 
  • Sometimes I double question things: is that a ‘DS-thing’ or is it a little kid thing? Or what will the people around think when Vince does something crazy on the bus for example: do they think he does that because he has DS or because he is a kid?
  • It sucks because sometimes people choose to see DS and not Vincent.
  • It sucks because Vince has a higher risk that a ‘typical’ kid of getting Leukemia, so I freak out each time he bruises.

So those are some of the things that I do not like. Do you want me to write a list of all the things that I do like? Felicia left me a comment on a post today, and I clicked over to her blog to see her baby. Her one liner on top of the page says it all though:

I never knew I wanted a baby with Down syndrome until I had one.


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