II Corinthians 12:9-10

"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities... for Christ's sake: for when I am weak, then am I strong."
II Corinthians 12:9-10

Tuesday, August 2, 2011

A Parent's Perspective

This post has a guest writer, Brenda VanderKooi (known to me as Mom). As a parent, you experience a whole different battle. Since I've had many parents contact me about the surgery, you parents can probably benefit from reading about what it has been like for my parents throughout this whole experience.

We've had a few people ask if I have posted any comments or have a web page of my own that talks about what parents deal with when their child has scoliosis. I think it's time now to share my feelings on the subject.

I remember when we first found out Katie had scoliosis, I was worried. I had an aunt who had scoliosis as a child and had 2 surgeries to correct it. I felt sick to my stomach. The doctor said her curve wasn't bad, but keep an eye on it and have the doctors check it when she is about 11. My husband was an active duty Marine, so we moved a lot, and the girls had many different doctors, but I always made sure they kept up on the scoliosis. By the time she was 11, we were told she had 2 curves and needed bracing. I was devastated. The first day she got her brace, I cried. How could I put my child in this hard hunk of plastic? I don't think I ever imagined her having surgery.

I remember having to remind her a few times to get her brace back on and telling her if she didn't wear it her curves might get worse and she could have to have surgery. Well, she did wear it and her degrees still got worse, and she did end up having surgery. When they told us she would need surgery, I sat in the doctor's office and cried. Katie was crying too. I think it hit us pretty hard because my husband was in Iraq. He came home over Christmas break, so we made an appointment with an orthopedic specialist in Indianapolis for a second opinion... and the answer was the same. When my husband came home from Iraq, he started working in Chicago. We had some friends whose son had orthopedic surgery in Chicago at Shriners, and he went to visit them. That's how we learned about Shriners.

After our appointment at Shriners, we needed to set a date for surgery. I really struggled with this. I knew she needed it, but I kept thinking maybe it won't get any worse and she will be fine the way she is. But as the curve increased, so did her everyday pain.

I would pray every day asking the Lord to heal her-- to straighten her spine when nothing else was working and the brace had failed her. I knew He could do it, but I just couldn't understand why He wasn't doing it. I couldn't imagine my daughter being cut open and going through so much pain. She always had such a good attitude about everything, and of course she did about this too. I would lie awake at night and sometimes cry. Sometimes I would get sick to my stomach thinking about it. I talked to her one day about it and told her I didn't like this option. She said, "Mom, did you ever think that maybe God wants me to go through this?" Well, after watching her struggle daily with pain and yet keep a good attitude, I knew she needed surgery.

When they wheeled her into the OR, I thought, if she calls my name, I'm yanking her out of here and we won't go through with this. She did call my name, but only to ask if I would call the school secretary to see if she passed her trig test!

I finally had perfect peace when they came out to tell us that the doctor had begun the surgery. We were sitting in the waiting room and there was a sweet couple sitting across from us, and their infant son who has scoliosis was in surgery, as well. We began to talk and were able to share our story about Katie. It was a special time we shared sitting there in the waiting room. The Lord is so good. He does know what's best... even when it involves our children. I have often thought, I trusted Him with my soul to save me for eternity. Why am I struggling to trust Him with my child? He made her and knows every part of her and knows what will happen. He certainly can carry her through this, and He did.

I do have to say, when you first walk into the ICU and see your child laying there with the tubes and looking really swollen, it is hard to handle at first. They showed us her x-ray right after we saw her and it was so straight. We knew we did what was best for her.

I'm sharing all of this with you parents because we are human. We love our children and don't like to see them suffer. I cannot tell you how it feels to live with scoliosis or what it's like to have a spinal fusion, but I can tell you I know how it feels to watch your child go through this and to know we can't make things all better for them like we did when they were younger. I know what it's like to take care of them for a long stretch... and how good it feels when they are starting to eat again and to dress themselves. I know the nervous feelings you have sending them back to school unprotected in the halls for the first time after surgery. They do bounce back and things do get back to normal.

Advice I would have if your child is facing surgery-- Katie's blog is full of useful information that we didn't have before surgery and that I wish we would have known. This blog was written to help the patient as well as the parents. It's full of things they do not think to tell you before or what is expected of you when you get home. You will become nurse 24/7, but it is great bonding time. If you have any questions or just need to talk, please feel free to contact me. I am praying for all of you who are facing these decisions of surgery and those who already have a surgery date.



  1. Brenda, Thank you so much for your post.
    I am an avid "researcher" an have scoured the internet for answers. I have not found them, but I have found information and amazing support through forums and blogs like your sweet daughter has done.
    My Hailey is 13 and was like 65upper 45lower (last may) but just by the look of her back from the outside - I'll bet it's a LOT worse now. You can actually see it now. Shirts crooked etc. Also she's is more pain and having other problems; tingling sensations etc.
    So we are in line for surgery at Shriners Sacramento. Our Dr has wait list until after first of yr. I made an appt at his private practice for this Tuesday as I think we cannot wait. I am trusting that we will make a better plan and that it will be Gods plan too.

  2. Brenda,
    Another mom here! Today is a very confusing day. And, I am on the verge of breaking myself. My daughter is 11 1/2...soon to be 12. She has scoliosis, lumbar and thorasic, 40%, and is in her Providence brace and has just started wearing it to sleep in. She will be wearing it to school hopefully by next week. She will be in her brace 16-18 hours a day.
    That is where the problem sets in. She tried to wear it and was searching in her sisters' closets and her own trying to find clothes that didn't make her look (and I quote) "ugly, disgusting and its embarassing and it hurts!" Bless her heart, she just broke into a million little pieces! So, I have planned a little shopping trip. We will see how that goes. I am scared to death! We will take along our "little friend" and hopefully find something.
    I just wished that I could fix this and make it go away. There is not a band-aid for this little problem, is there?
    My husband and I are about as supportive as you can get; to her face; and then we are just devesated when we are not with her. Always looking for others that have and are going through the same thing.
    We have prayed and cried and prayed and cried. I don't know how to console her. Being mommy, this time, just isn't enough for her. It's the pull away from me and then won't let go of me thing. Hug me and don't. It's just heart-wrenching.
    I think she needs a buddy to help her through this - as do we.
    We are trying to put off surgery as long as we can. Doctor's say the brace looks good and like it may work. We just keep praying that it does.
    Thank you for posting your POV. It really does help.

  3. K,
    I want you to know I will be praying for your family. I do know how heart wrenching it is for a parent to watch your child go through this. I would love to talk to you more, my email address is in the post. Katie would love to talk to your daughter also if she is willing. Katie has been through it and has talked to several other kids who wear braces and have been through the surgery.It is the reason for her blog and video. Hang in there and I am here for you if you need me.