Do you ever feel helpless as a parent? I’m sure if you’re honest, then the answer would be a resounding yes. Well, let me just share with you…I am feeling extremely helpless when it comes to Caleb’s Tourette Syndrome diagnosis. Yes, Brian and I are doing everything we can to figure out what triggers Caleb’s tics and how to help him manage them. However, I feel totally helpless. It hurts me to my core to see that our son is “different” than his peers. I can’t help but hold back tears as I think about it. No, his condition is not life-threatening; however, he WILL most likely have to deal with this the rest of his life. The fact that there’s no cure is a hard pill to swallow.
I usually keep my emotions regarding Caleb’s TS in check, but when his tics start manifesting in a very obvious form, I can’t help but feel helpless. He knows he has tics, and he knows that there’s no cure. He knows that he’ll deal with this the rest of his life. As his parents, we decided that we would be open and honest with him about his diagnosis. We don’t want him to be ashamed of or embarrassed by his tics; however, deep down…I know he is.
He will sometimes come to me and ask me if there’s something I can do to make his tics improve or go away. When I have to tell him that we’re doing all that we know to do right now and it’s not enough, I feel helpless. He often wants to talk to us regarding his tics and how they are affecting him. Just last night, we were talking about them, and I was trying to gather his perspective. When he said that he feels weird because of them, that broke my heart. How do you explain to your child that he’s not weird for having tics when all of his peers don’t?!!? We have tried to explain to him that God is using all of this for His purpose. However, when he comes back with “Why would God want me to have tics?”…I don’t know how to answer. Yes, as an adult, I understand that God has a purpose and a plan with Caleb’s diagnosis; however, I cannot begin to understand how I’m supposed to explain that to our seven-year-old son!!! Once again, I feel helpless.
Brian and I are thankful that our situation isn’t any worse than it is; however, as parents, none of us want to see our children suffer. We don’t want to see pain in their eyes or in their hearts. We don’t want to have to answer those tough questions that we can’t even answer ourselves. We are doing everything we can to help Caleb; however, there are days when I feel extremely helpless.
If you read this, then thank you. Being able to share my thoughts and feelings through this blog is helpful. I know not very many people read it, but that’s okay, too. If even one person can better understand what we’re going through, then my sharing has been beneficial. If another parent of a child with TS reads this and finds comfort or familiarity, then it’s worth it.
Park City Utah
2 years ago
6 comments:
Sherrie, there is a LOT you can do with the oils and many, many testimonials of people who have significantly improved/recovered from TS. Karen gave me a lot of specific information, but I wasn't sure you were interested. Let me know if you would like the info. Praying for you!
Sherrie,
I know that you are going through a hard time...everytime I see you I can read it on your face. I just want you to know that even though I am not walking in your shoes and have no idea what you are going through I have been praying for your whole family. I'm not sure what or if my prayer is doing but I do know that God hears every word. God NEVER wants us to feel helpless and he is always there to provide comfort and peace for us. It is easier said than done to rely on Him, and is a struggle to turn it all over to Him every day.
It's hard for a child to understand why God does the things that he does. Maybe you can tell Caleb that by being different in this life he will be able to help many people in this world now and in the future by sharing his testimony. He has a lot to give and will go through rough times, but that is because God wants him to trust Him to take care for and give him comfort. By Caleb having TS he is also helping YOU to rely on God. His TS is helping to grow your patience, your love and many other things that you wouldn't have to strive to give over if he wasn't going through this in life.
I know that we aren't close, but I want you to know that I am here for anything you need! Many people say that, but I'm serious...ANYTHING! If you need to chat, to cry, to get a hug, etc. You call me!
I will continue to pray hard and lift up your family.
Heather
Worrying about your child and feeling helpless never ends with your children. Even when they grow up. They are all going to have hurdles and rough patches and most times, there is nothing we can do to help them. We have to raise them to deal with these times and love them through it. It's all we can do while we are dying inside.
I feel your pain.
Sherri,
I know exactly where you are coming from! Both of my kids have differences/challenges that make them different, and I see the pain in their eyes when they notice the differences in themselves compared to other kids. It breaks my heart as well. When my kids come to me with difficult questions like these; I just tell them that God made them special and along with the challenges that they face, God also gave them special gifts that most of their "typical" peers don't have. Their challenges, while hard to deal with right now... will in the long run make them more understanding, accepting, compassionate people as they grow and mature. While I also get that feeling of helplessness where my kids are concerned.. I try to remember that God doesn't give us anything that we cannot handle (with His help, of course) and that everything happens for a reason. While we may not know the reason for quite sometime, it will eventually manifest itself to us thru Him and become clear. You are doing a fabulous job as a Mom and for Caleb. He is a delightful child, very friendly and very smart. Try to focus more on the positive things about him (during these times) to help you get through these difficult times... I know that we don't talk often or know each other well yet, but I am here for you and I know what it is like to raise a child that has differences and challenges and "feels different" than other kids. I am here for you anytime... to listen if you need to vent, cry or even to give helpful advice if you want... I may not be traveling your exact path but our paths are very similar to each other. And always remember to SMILE... because God is smiling down on you and proud of what you are doing and how you are raising this very special gift He has bestowed on you!
Dani M.
I have nothing to add. I can't imagine what you as parents are going through or him. But being honest with him is definitely the best way to go.
Sherrie,
Thanks for sharing your feelings. I highly encourage you to read Psalm 139 to Caleb. I love verse 14, "I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well."
It may be hard for a 7 year old to completely get it. But if you let him know (& show him in scripture) that God made him & that what God makes is wonderful maybe when he doesn't have complete understanding of TS, he can simply know that no matter what God made him wonderful. There is also a great song by the David Crowder Band, not sure of the name but it says, "You make everything Glorious, You make everything Glorious & I am Yours."
I will be praying for all of you.
Leslie
Post a Comment