Happy World Down Syndrome Day

Today is March 21, one of my favorite days all year. Today is the International Down Syndrome Day. You know 3-21, like having three 21 chromosomes.
DS did change our life. A lot. But not for the worse. It is amazing how many great people we have gotten to know over the last almost 4 years. For us it has been a very positive experience, even though you sometimes have to battle extra hard to get what each child deserves. I am fine with that though.

The question I get the most are:
1) How much disabled is he? Tricky question and I understand why people ask. My answer is usually something like he is very good with gross and fine motor skills, cognitively he is also good, and speech is really where we are behind.
2) Does he have it [DS] a lot? You either have DS, or you don’t. Vince does.
3) Does he really have DS, he does not look like it? Yes he does. Very sure.

I must say, I really DO like when people approach me and actually ask about it! Does not make me mad/annoyed at all. I appreciate when people are educating themselves. I have no problem talking about it, I mean, a free card to talk about your kid is every parent’s dream subject, or? Yes, it is for me actually.

But really, what makes your kid different from mine? Basically only this:

3-21’s. Just like that. In our case a  Translocation, where two 21 chromosomes have grown together and a third one sits on the side. T21;21.

3 Responses

  1. Hi,

    I recently ran into your blog while searching for information about Down syndrome– Translocation specifically. My husband and I gave birth 10 weeks ago to our first child, and we were shocked to learn that she has Down syndrome (Translocation 21;21). Although I’ve been connected with other moms who have young children with Down syndrome, I’ve yet to find a family with a child who has the isochromosome 21– until I found your blog. 🙂 I would love the opportunity to ask you some specific questions about this type of Down syndrome and about the genetic testing you may have pursued after learning about your son’s diagnosis. If you’re willing to share, please contact me at the following email, and I will respond with my questions. Thank you!

    Email address: andiehl99@yahoo.com

  2. Tänkte på er igår. Hoppas ni hade en helt underbar dag.

  3. Happy WDSDay!

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