I was only partially correct in my thinking. I had NO IDEA that these kids were fighting a courageous battle each day. Not only did they have a disability to deal with, but they had to fight day and night with the MANY health concerns associated with that disability. Their disability may have had a name, but that name didn't tell me (at least) the underlying, and possibly life-threatening factors. I was completely ignorant.
Looking back, I feel horrible that I didn't get to know these kids better. My life could have been greatly enriched had I done so. Inside every special needs child is a STRONG and HEALTHY spirit. I see that everyday in Jett. He wants SO bad to be a happy and curious baby, but his body won't let him. Instead, he fights the ability to breathe and swallow correctly everyday. He wants SO bad to be a chubby baby, but instead fights to gain weight on his frail frame. He is not like other kids. However, he is my JETT! He has the sweetest look in his bright blue eyes that will melt your heart and the cutest cleft lip I have ever seen. To tell you the truth, I am going to be sad when he has surgery on his lip. I know I am going to miss it.
Even though we have our rough patches and I wish so much that I could take Jett's pain away, I am so grateful to be his mother. I feel very unqualified for this position, but I am learning as I go. He is obviously here to teach me a few things about life. I'm also so grateful for Cody. He is seriously the most amazing dad who, amidst going to dental school, takes the time to be in constant contact with all of Jett's doctors, make a zillion phone calls to our insurance company and home health care, and of course, take time with Jett to make sure that he does at least 20 tummy rolls each day. I couldn't ask for a better person to be on this journey with.
9 comments:
hi cody and tenille, my name is anne, jett is just beautiful and doing so well with his head control! i have been exactly where you are on this journey. my son harvey was diagnosed with pch too. when he was three days old the drs picked up that he was having seizures which lead to an MRI and well, you know the rest. he had a very severe case though so ours isn't the happiest of endings. this doesn't have any bearing on jett at all though, from what i have seen, each child is completely different and alot do really well, much better than anyone ever anticipated. i'll follow your blog and will be here if you ever need a chat. you both sound strong and positive, keep up the good work, you are doing an amazing job, love anne xxx
I can't say it enough how amazing you guys are. I love love love you.
Hi! Wow that is one gorgeous boy you have there. I have a seven month old daughter with PCH 1. We are currently NJ feeding her and she is on 12 medications a day! Weve had a few touch and go moments but so much love as well. There is a facebook PCH group if you are interested in joining - it's worldwide. Best wishes to wee Jett he's lovely xx
email is michelle.taylor@hotmail.com
Thank you so much for sharing your life with us on your blog! Now we can learn from Jett too and feel his sweet spirit too.
I agree with this entire post ... except one thing: YOU are qualified. That is why he came to you and Cody. :) You are a great mama, Tennille. He is so lucky to have you! :)
Yay Jett! I love his cute little smile! He seems like he loves his physical therapy! :)
We love that little man so much! I love that last picture of you holding him, you can just feel the love between you two!
Loved reading this. Bless you, woman. BLESS YOU.
I felt the same way you did when I started working in the disability sector. I was aware of individuals with disabilities but had no idea of the obstacles they were faced with daily. Now with my own child experiencing the same challenges, my view and intake of the world is so much different. My hope is that I've become less close minded, more understanding and that I see things brighter than before. :)
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