This is really cool! A while back I was trying to prepare myself for what to anticipate on the day of Tessa's CI activiation. I found a string of 'CI Activiation' videos on YouTube but could relate to very few (because of Tessa's physical disabilities coupled with her hearing loss) until I found the one of Miss Emma. Most of the videos were of children playing with toys with their parents and audiologist waiting with anticipation until recognition of sound when their CI was turned on for the first time. Emma's video was different. Emma was being held by her mother with her head slightly tilted...and when her CI was turned on her reponse was the most precious of smiles. There was such a striking resemblance between Miss Emma and Miss Tessa. I looked up more videos that had been posted by the same publisher and found some amazing similarities. I took a chance and sent a message via YouTube to the publisher of these precious videos of Emma (and older sister Julia). It was really random to message a total stranger, but I just couldn't help but wonder if Miss Emma had CMV as well. It was a couple of months ago that I sent the message and just recently came to terms that I would probably never hear anything back.
Anyway, this morning I had an email from Kristina (Emma's mom, see below) in reponse to my message. I have to say, my heart is so touched this morning. Come to find out, Emma does have CMV and strangely enough they didn't find out until she was 3 months old. To my knowledge she doesn't have any vision issues, but is deaf (but w/ both CIs now) and has cp. Emma turned 3 in October and I've spent just a short time on their blog this morning. I was so interested after seeing some slideshows of Emma and all that she was out doing and all the different equipment she had access to. It is really neat because Kristina has a particular post that talks about the equipment they've invested in for Emma and how much it has all changed her world-
Equipment ideas via Emma’s blog:
http://howlifehappens.blogspot.com/2009/09/emmas-equipment-lots-of-photos.html
One of my favorites is what I called a 'jumbo-bumbo' when I first saw Emma sitting in it in one of her slideshows...it's actually called a CHILDRITE Seat):
http://howlifehappens.blogspot.com/2009/10/cleaning-is-funny.html
I am so encouraged today. Miss Emma and her family live in Delaware, but the access to their experiences is beyond a blessing. Emma and her older sister are just a little bit closer in age, than Tessa and Parker...but how unique that God has opened this door of information, shared experiences, and friendship.
Re: Emma's Videos
From: chwhite97, 9 hours ago
Hello, Whitney.
This is my husband's account but I'm writing you back. My husband received your email and we were both touched by it. First, I want to say Congrats on your little girl! Little girls are amazing :-) They grow up so quickly and it's hard to have a diagnosis when they are so young - it almost makes you stop enjoying the moment because you worry about the future a lot - but I want to say to make sure you take time to enjoy little Tessa and not focus too much on CMV or what the future holds. I look back at Emma's baby photos and just want to gobble her up she was so adorable and I'm sorry to say that I spent so much of that time full of anxiety that I might not have appreciated it as much as I would have liked.
I do want to say that I have a blog where I post about Emma and our life in general. I would say that we are leading what we consider a fairly typical life these days. We go out and enjoy life as a family but it is different than if both our daughters were typically developing. Some days that is just fine by us, some days it's a bit more challenging to us. But, overall, our life is very enjoyable and about the only thing I might want to change regularly is giving Emma some form of communication, but I know that will come eventually. You could check out my blog at: http://howlifehappens.blogspot.com/ if you want to see more about our journey.
Also, are you on Facebook? There is a great FB group that was just started by Janelle Greenlee (STOPCMV.org founder) and loads of stuff is posted on there. It might make you feel less isolated if you join that group because there are lots of us cCMV parents out there! More than I knew about in the beginning for sure!
Also, feel free to contact me, I'd be happy to chat a bit if you want. We live in Delaware - I'm not sure where you live, but if its nearby we could always meet up for coffee with the girls. Emma is a hugely outgoing little one!
Hugs to little Tessa from us! And to your family!
Kristina
God's timing is so good. Someone once told me that a journey shared with a child with special needs is undoubtedly filled with highs and lows. The lows can be some of the lowest of lows...but the miracle is the experiences of the highest of highs. I have felt so weary these last few weeks, but today the Lord has restored the joy of my soul. He loves me and delights in the perseverance we have on our journey!
~Whitney
I get goose bumps every time I read, Whit!! Thank you for ALL of this today AS you experienced it! What a treasure to share with you a Saviour who restores joy and hope!! ...My heart sings with thanksgiving ...for our Lord ...for new bonds ...and for you, Darin, Parker Gage and Tessa Rayne!! ...I love you, Whitney! ...Mom :)
ReplyDeleteWe are so very thankful and thrilled about this contact you have made! Praise the Lord! What a blessing and encouragement for you and Darin! And, for all of us! This brings joy to our hearts!!!
ReplyDeleteLove & Prayers,
Grandma & Grandpa Bynum
Whitney, So enjoy keeping up with you and your precious family. It is so exciting to see how God is providing for Tessa and your family. As you know God's timing isn't ours but is always perfect. God certainly delights in all of you and entrusted you and Darin with Tessa and her special needs, He knew that you would be wonderful parents for Miss Tessa. Love in Jesus, Karen Funnell
ReplyDeleteSo much of what you are going through is similar to our Noah - he doesn't have CMV but has multiple problems. He has truly been a blessing to our family even through the rough times - he had the same braces as Tessa. You and your family are in my prayers!
ReplyDeleteTrish Flores aka Noah's Grammy Trish
Hello! Just popped over and your family is beautiful! What gorgeous children you have! I bet you are often stopped on the street when out and about with these little ones :-)
ReplyDeleteSo glad my message came to you at a good time even though I was feeling bad it took so long to respond! That's what happens when things are sent to my husband instead of me - and we use his account for YouTube to streamline our videos. Anyway, would love to chat more with you. I'm so excited for the CI for you! Once it has been turned on a week you won't know how you did things before the CI. It's almost like when you have your baby and you can't remember life without him/her. It really was that life-chaning for Emma. Head control gets so much better when you can hear - they look at things, have a reason to follow items. It's just such a blessing to know that Emma can hear. I think it will be a double blessing for you knowing that Tessa can hear with the CVI challenges on top of the hearing.
Keep up the good work with your little ones. It seems to me like Tessa is one lucky little girl!