This is something I posted on an online forum. The question was about if you see DS as a blessing.
To me, DS is not the worrisome thing with Quinn. I would welcome only DS, but this is not to say that someone else might not have a totally different view. She had seizures which set back her development and were much more scary to me. Although we are moving forward now, I know that these seizures have impacted her. I hate Infantile Spasms, but I don't hate DS. I love Quinn and if she has that extra chromosome in every cell of her body, so be it. But I cannot stand for seizures running through her brain. This is why it gets confusing...Quinn was at a higher risk to get Infantile Spasms because of DS. But then DS helped her treatment for Infantile Spasms become more effective. So many kids who are typical who have Infantile Spasms do not get their seizures under control. It is just so sad to hear what these kids and their parents have to go through. DS was our friend here. It helped her so much and her neurologist would talk about DS in a positive manner for her. Jeez, how is someone supposed to feel about all this? It is confusing. It put her at-risk, but then saved her. But today I went to church and I am not going to get preachy but I so understood the sermon because of all this. The sermon was about grace - sometimes grace comes in ways that aren't exactly what we wanted or expected. To me, if Quinn had to have Infantile Spasms, I am just thankful she had DS. Maybe the DS was a blessing to us. Who knows?
-Karyn
Breaking Point
1 year ago
Wow,this is just amazing. it made me remember children with tetralogy of fallot, they have to have ASD or VSD (meaning they have to have holes in their hearts) so they will survive. I have ASD and it made me see that disease as a blessing. I totally agree with what you said about it being grace. Your kids are so beautiful
ReplyDeleteWow...I HAVE NEVER SEEN THIS SITE...UNTIL A FRIEND SHARED THE LINK to me this morning. As I scrolled thru the list...I picked Quinn because of my grandsons name. And just started to browse. Then I saw a post from my birthday so I just choose it and NOW ....I see the Info. about ASD & VSD...My Sin'cere had both and her VSD remains. She is only 5 and I am trying to live,learn,keep up and keep her safe. Sooo much to learn...so little-known...js thank you for sharing*
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