It's been a hard couple of days for me dealing with the realities of Luke's struggles. I had a long (but good) conversation with a lady on friday about her son, and how he was born under similar circumstances as Luke. He has severe learning disabilities. In fact, so severe that she is having to quit her job to home school him. (He's 13 now). She cautioned me that her son seemed developmentally normal until he was around 18 months. And by 2 years old, he still only said about 3 words. The Dr.'s say that this is all due to his lack of oxygen when he was born, and it caused brain damage. This scares me, because Luke seems like such a normal baby, it is hard for me to imagine that he may have brain damage. Unfortunately, this is not the only story that we have heard of babies being born under similar circumstances as Luke, and are really struggling through life. My sister Kristin reminded me that we only hear the bad stories. People don't tell the good stories because if their child is fine, there is nothing to tell. I need to hear some good stories. Some stories of success. Does anyone have any?
Then of course there is the matter of his hand. I know that he will be functionally fine with it. What I worry about is what others will think of it and how he will be treated because of it. For our church youth group we are preparing a 10 day "Walk with Christ" for the girls. I was viewing a youtube video this morning that I wanted to include with it. The music is called "His Hands" by Kenneth Cope. It is a beautiful song. Wow, it hit me hard though. I went through a range of emotions while watching it. First, I was shocked with the realization once again (it happens about once daily) that Luke would not be able to use his hand normally. It kept showing pictures of perfect little baby hands, and I was sobbing. Next, I was angry. Why would Luke be given this trial? It's simply not fair. He is such a perfect sweet little boy and he should not have to live his life with this burden. Then after finishing the video, and watching the life of Christ, I realized that Luke is special. Yes, he has a deformity. But watching Christ in the video and listening to the words of the song made me realize that it doesn't matter. Someday soon I hope for acceptance and peace with it. I'll admit, I'm not there yet. Keeping an eternal perspective is going to be key for me. And for him, though somehow I don't think he'll have the emotional issues that I have with his deformity, you just want the best life for your child, and then of course there is the issue of wondering what I did to cause this...(I know, I know, you just can't go there). I think the hardest part for me is that, in my eyes, Luke is perfect. And I know that in the eyes of the world, he is not.
I really didn't write this to be a downer. Writing is therapeutic. I think this is just part of the process for me. I really do try to focus on the good, most of the time. I might have some bad days. My baby is missing fingers, and that is just hard.
Thanks for listening. :)
10 comments:
Wow Vanessa. How hard. I know how worried I was with Wyatt's club feet, even though every doctor told me it was totally treatable and now he is fine. I still always watch him walk and run and pray we won't have to do a surgery someday.
My older brother and younger brother both have kids with learning disabilities. Aubrey is 4 and has a few signs and various noises for speech. Aydri is autistic. What is amazing though is how each little step these kids make brings joy to our whole family because of the effort that is put into it by them and their parents. Aydri is being integrated into "normal" school this year and we are all so excited for him. Aubrey brings so much love an light to everyone around her with her huge smile. She's been going to horse therapy this summer and has progressed in a lot of areas. My sis-in-law writes a lot about it--both the good and the bad: nelsfamily.blogspot.com.
Anyway, I don't what to say, but just that I understand how you might feel angry and scared, but he was given to you because you and Jared are the ones who will know how best to help him with anything he has to face. Love you.
Vanessa- you are an amazing writer and express yourself so well. You are awesome and Luke IS perfect, no matter what the world may see. Dumb world. Everything will work out. Everything always works out!!!
i agree with jana. of course your little boy is perfect! i don't have any words of wisdom but i feel for you and i know it must be hard.
I think Luke is lucky to have a mom who loves him as much as you do!
Ashlyn had a little boy in her kindergarten class that was born with only half of an arm. I was really worried the first day I saw him that he might get teased or that my child might do it. Ashlyn had an amazing teacher that took it upon herself to educate the kids on disabilities and to teach them that he was just as they were, but that he had to do things differently. I can not believe how this helped the class learn about others with disabilities. My child is a better person for having this little boy in her class. She learned a lot from him. You will find that Luke blesses your life and the lives of others. He will grow up with this hardship not knowing any differently. I agree with Kate, Luke was sent to you and Jared because of the love and confidence you could give him. You are awesome!
Luke is your miracle child, and God will continue to work miracles in his life. You are an amazing mother, and I'm glad you shared on your blog. Since I don't get to see you often, it's nice to know what things are really going on in your brain. :) I love you!
nessa! amen to all commenters, and especially to kate and suzy - he will be a huge blessing to all people who meet him. i wish i had words of comfort, but all i can say is i love you dear, and have faith that you will learn many lessons from this, and that your love will strengthen him!
Sweet Vanes. Blast the trials!
I had a 10th grade student with a deformed hand. It was the second quarter before I even noticed it, and I walked by her desk every day. She was bright and successful and had tons of friends.
Thinking of you.
Thank you guys for all of your nice comments! It's good to hear your stories and encouragement!
I read this yesterday and it made me cry, but I didn't have time to comment. I just wanted to let you know that you've been on my mind. Trials suck and it's hard to be optimistic all the time. I know I would feel the same way if I were you. He's so lucky to have a family that loves him so much and will give him all the opportunities he needs to grow! I hope you will feel peace as time goes on. You'll be in my prayers :)
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