Tuesday, May 20, 2008

Listening to my Child that does not have a voice.


I have two amazing children. My oldest Collin was born with a very rare and life threatening illness called trichothiodystrophy. He has been fighting since the day that he was born. He has been in and out of the hospital, had more surgeries, and more tests than any sweet child should have to go through. The amazing part is that it tends to bother me more than it bothers him. After receiving tests results from an MRI one of my worst fears was confirmed. “White matter has taken over the T2 area of his brain. This controls communication. This is most likely why your son has gone deaf. This also affects his speech.” Knowing the answer but needing to hear it for myself I asked “Do you mean he wont ever talk?” “ I am sorry but most likely not.” The thought of not ever hearing “I love you mommy” was devastating. So, like other hard days I broke down, cried, and grieved for this event that I would never share with him.
Fast forward to a several moths ago in my van. Collin and Regan, my three and half year old daughter, were sitting in the back. I asked them both, like I always do “What do you want to do today?” Regan started giving me her list of things and then I said “Well, Collin what do you want to do?” I do this knowing that I am not going to get a response but wanting to include him anyway. Well, this particular morning was very different. All of a sudden from the back in a deep, sweet voice I hear “ I want to go to Disney Land!” “What!” I said “I want to go to Disney Land!” Regan said again for the second time in her very best deep voice pretending to be her brother. We giggled and had fun as she continued to answer questions for him. It was amazing to see how well she knew her brother.

Regan has continued to “speak” for brother since that day in the back of my car. I didn’t truly hear Collin until one afternoon when we where playing. Collin and I were wrestling, tickling, and having fun. He was looking at me with the biggest smile as he was belly laughing. Then all of a sudden I heard “ I love you mommy”. Yes, it might have come out of my daughter’s mouth BUT they were my son’s words! It was amazing to hear my son tell me that he loved me for the first time.

It is amazing how much we can hear as we take time to listen. With God anything is possible.

14 comments:

Eva & Mike said...

Julie-I have been having a rough few days and your post not only brought tears to my eyes but also humbled and gave me peace. I am so grateful to know you! Thank you for the blessings you bring to so many of us.

Tawny said...

Thank you for sharing little pieces of Collin with all of us! You are an amazing mommy!

zuniga family said...

That was absolutely beautiful!

Jordan & Kimberly said...

Jules this gave me the chills. How blessed you are to have the most amazing children. Regan & Collin are truly special and so lucky to have you as their Mother. Thanks for sharing this. Love & miss you!

Tina said...

Wow, that brought tears to my eyes.

carrfamily4 said...

Hey Julie, I loved reading your stories about Colin. What a sweet little boy. Reagan is diffintly in tune with her brother and what a special bond they have. You are an amazing mother and someone who inspires me to be grateful for all the things in life. Your attitude and spirit are truly amazing.
lets plan a play date soon.

Julie Carr
carrfamily4@sbcglobal.net

Brian & Kara said...

Julie~
I love your outlook and attitude on life. You know you can't change things, so you face them head on and make the best of them. Thank you for being such a great example to me. I really admire your resilience!

Katie said...

I swear, you have the sweetest enteries. Sharing your experiences truly blesses my life. Love Ya!

The Gray Family said...

what a sweet story...I love reading your posts! And tell Reagan she did a fabulous job on your necklace :>)

Jean said...

Julie i have been mia for a while & what a blog to come back too !!!! Your a loving mother with two wonderful children an awesome husband!!!!.Thanks for being such an inspiration to all of us that read your blog

Jean

The Sandbergs said...

I'm so so sorry to hear that you guys have the flu too. I wish the flu would end already! Your kids are the sweetest, and we wish you guys well. Don't worry, there is light at the end of the tunnel!

Amy and family said...

(((Julie)))That brought tears to my eyes. I can't imagine the emotional pain that you and Jason have gone through in coping with Collin's illness. I'm glad that Regan is able to be Collin's "voice" by expressing his love. You and Jason have been blessed with two very special children. And they have been blessed to be born to parents who are full of such love, devotion and strength.

munyer jerk chicken said...

Tender mercies... that's what I like to call these experiences. Thank you for sharing.

Trena said...

Julie! I can never read your blog while I'm at work because I start sobbing! You are so amazing and Colin is such a blessing and sweet child. I've learned my lesson only to read your blog at home!! :)