Wednesday, July 9, 2008

Our Girl

I realized that most if not all of my friends do not know anything/much about Chantel so I thought I would just give a little info about her life and about Rett's Syndrome. Mom C, if any of this seems innacurate, please let me know so that I can be right. :)
Devin's oldest sister Chantel has what is called Rett's Syndrome. I am not positively sure of when she was actually diagnosed, but I think that it was sometime in her youth. Rett syndrome is a neurodevelopment disorder that began to become noticeable in Chantel when she was about 2 I think. Her brain development began to slow and Mom and Dad C knew something was wrong, although many doctors did not know what the cause was. Rett syndrome is very common among girls because the gene for it is on the X chromosome.

Chantel has many outward signs of Rett syndrome, although in her heart I am sure she just laughs her head of when people act like there is something terribly wrong with her. Some people will talk to her very loudly, although she can hear perfectly fine, or they will act like the things that she does that are normal for her, are signs of something wrong. It is so funny to hear stories of how people who don't know her act toward her. Anyway, Chantel wrings her hands, grinds her teeth, avoids eye contact with others, shows a lack of interest at times, has scoliosis, and other things. If you ever saw Chantel, chances are she would have a chew toy, preferrably her hamburger, in her mouth to preven her from grinding her teeth or chewing on her wrist.

Chantel has been such a tremendous blessing in my life for the short period of time that I have known her. While there are times when she could care less whether or not I was around, there are other times when I know that she loves me and cares about me with all of her heart even though she can't tell me with her words. She has taught me so much in this past year that I have been able to grow close to her. I am really going to miss her and being able to laugh with her and see her smiling face when I show up with a new shirt with lots of pictures or detail. She always pays attention to my shirts if they aren't boring. She is always making us laugh, which she just gets a kick out of. It will be so fun in the next life to hear in her words what it was like for her when she teases us all. She is such a sweetie and is so close to our Father and I just treasure that about her. I know it was so hard for Mom and Dad C to leave her behind, but she is in such great hands, and we can tell all the time how happy she is. We all adore her and would do anything for her. Love you lots Chantelly.


David&Deena said...

Well that made me cry! Thank you, Ashley, for loving her. As you can tell, she welcomes you to our family and loves your attention. Rett Syndrome is rather uncommon, but it is only seen in girls, because no males make it to full term birth. We discovered her regressing when she was about 2 yr old...lost her few language skills, began to show autistic tendencies. She was finally diagnosed at age 16 and when she was 28 the researchers found it to be a chromosomal problem. She has no self help skills or language...but she does communicate with her eyes and with her heart. She has been our teacher for 36 yrs and a crowning jewel in our family. We are so thankful for you who love her and who have taken part in taking care of her so we can serve. We have deepest of feelings for "our girl" and those who love her!

DJ Probert said...

This is sweet, Ashley. I miss Chantelly.

Mat, Chenae & Jackson said...

i'm so glad that chantel has sister in laws that love her so much!

Heber and Chalonn said... sweet! We love and miss you Chantel! Thanks Ash and Mich for being such awesome sisters to her!