With Bear Chase in the books it was time to spend a bit more focus on James. He was slated to have surgery last week, but a rough stomach bug put an end to that one. Or at least delayed it 6 weeks. And with October being Down syndrome awareness month I thought I would take a moment to dispell some of the rumors about Down syndrome. I don't by any means claim to be an expert in all things Ds, but over the last year and a half I have learned a few things on our journey. Quite a few people have also asked me questions about Ds, what it is, what to call it, how it will affect James. I will always welcome questions about Ds, so please don't ever hesitate to ask. 

#1. Down syndrome isn't a disease. It's not something I did while I was pregnant, it's not something that can be cured or treated. Cognitive delays associated with Ds may be treated, related medical issues can be treated and physical delays can be helped as well. James isn't a condition so please don't call him a Down sydrome baby, a Down's baby, or a Down baby. He has Down syndrome, it's not who he is. Its also not preferred in the US to use Down's. Down syndrome, Ds, trisomy 21, T21 are the preferred ways to refer to Ds.

#2. Down syndrome isn't moderate to severe. James has plain old trisomy 21, not mosaic or translational. This means every single cell in his body has an extra chromosome. However just like any other typical child James may be better at some things than others and we'll just have to wait and see what his strengths are. Although from what I've seen already he understands things well, but may not like to communicate back to you. And he definitely has his momma's leg strength!

#3. Kids with Ds are always happy. I have definitely lay witness to some amazing tantrums! Yes, James is a very happy child with an infectious laugh. But I like to think that's James and that he would be a happy kid regardless of how many chromosomes he has. I was a pretty happy kid and I only have 46 chromosomes. 

#4. I've read quite a few blogs or stories about people saying how amazing it is to have a kid with Ds. Its amazing to have James not just because he has Ds. I honestly can't say it's amazing to have a child with Ds. The reality is most days its not. We've been lucky that James han't had any major health issues, but last month I took James to Children's twice a week for doctor's appointments and that doesn't include his regular therapy appointments or trips to the pediatrician. It's not all doom and gloom either, but I think all to often people paint this picture of Ds through rose-colored lenses. 

#5. Babies with Ds are only born to older parents. There is a higher chance of having a baby born with Ds if you're older. However approximately 80% of babies born with Ds are born to mom's less than 35. I was 33 when James was born. This is due in part to a larger percentage of babies being born to mom's under 35, but anyone of any age can have a baby with Ds. 

#6. Kids with Ds can't do things typical kids can. It may take James longer to do something, but he will get there. Just be patient with him. I hope he will be able to be mainstreamed in school, and often times kids with Ds are mainstreamed. He's just going to have to work a little harder. James may not be as fast or as strong as typical kids, but then again...maybe he'll be faster. There's a running club in Germany for people with Ds and many of the runners run marathons! There are a load of typical people who have never and will never run a marathon. Pretty impressive if you ask me. I don't know what James will be capable of as he grows up, but I'm certainly not going to tell him he can't do anything. I will do everything in my power to help him achieve his matter how lofty they may seem. I ran 100 miles not too long ago. I'm pretty sure if you told my parents when I was 17 months old that I would run a 100 mile race they would have laughed at you too. I've always said "if you want to do something you can" and I truly believe it. I believe that if there's that one thing you really, really want to do we can find a way to make it happen. That and I also say "can't means won't". There are very few circumstances when there is something you can't actually do. 

I remember once telling my mom I wouldn't be ready to have kids until I was ready to have a child with special needs. At the time I didn't think it would really happen to me...but it did. Had I have known prenatally about James' diagnosis it wouldn't have changed anything. James has taught me to slow down, to appreciate the small things and to really live each day because you just never know what tomorrow will bring. I have hopes and dreams for James. They may not have been exactly the same hopes and dreams that I had before he was born, but the important ones, the ones that really matter are still the same. My one real hope for James is that he finds love like I did with Dan. When he was first born this was one of my biggest worries and biggest sources of my sadness. But the more I learned about Ds the more I learned that there is no reason he won't find that kind of love. 

Week September 30 - October 6

Miles Running: 37.0
Hours Hiking and Running: 7.0


  1. Well said Siobhan. Very insightful words. James is quite the cutie. I know it doesn't seem possible, but there will come a day when the only time you guys will take James to the doctor is for a well checkup. Kendall has had so many major surgeries in her life, but now as a teenager she is very healthy...with the exception to the pink cast she got for her broken wrist two weeks ago! I think you have a future as a writer because your blog makes for very interesting reading. Take care.

    Kurt(In Texas)


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