I saw that last discussion were don in 2013 and wondered if it is still active? It would be a shame if not so...
Hi I am struggling. I cannot bear to tell my kids and have been hiding my daily struggles after the lsat surgery was only somewhat successful
Hello,
I have 3 kids, 9 year and 15 year old twins. I finally have my life back from TN. As of 4/11/14 I had MVD surgery. You can say it was successful since I am pain free. But I will have to give the facial numbness credit for that. I cannot feel the top of my head down to the bottom lip. Compare to life before, the numbness is tolerable.
I am able to enjoy hobbies now. Cooking, being crafty with my daughter, and camping. Oh and talk! Before surgery I was not able to to speak more than 3 words at a time without TN spasms.
Kelli
Hey Albee,
I am not hiding it to my children. They are 5 and 7 and you can explain nearly everything to them in a childfriendly and approbiate way. In my experience as a mommy and teacher I realised that it doesn't matter how hard you try to hide it your children will still at least figure out that something is wrong. They will not understand it but they will be scared because they see and feel it and have no explanation for it. I knew there was something very wrong with my mother even though she tried to protect me by hiding her cancer for four years. It brought a lot of anger, frustration and fights up between us if I could just understand.
My children are still very small. I told them that mommy has a damaged nerve in the face and that is sometimes very painful. So if I am in real pain or really tired I can just tell them: "Please understand, I am very sore in the moment. Give me 30 minutes so I can recharge like a battery." Then I try for the sake of my children really do that. Take medicine, lie down, drink a herbal tea and calm down my nerves. At least this prevents misunderstandings at home and they grow up with the truth in a child friendly way without being worried. Because they see that I can feel better after these 30 minutes. (And if it means to take a good dose of painkillers).
Also I think we underestimate children often... they can help us very much in our daily struggles... and if they just make you smile with a funny picture they made, cleaning up the living room or preparing an oversugered tea. :)
Albee said:
Hi I am struggling. I cannot bear to tell my kids and have been hiding my daily struggles after the lsat surgery was only somewhat successful
Kellie... it is sooo good to hear a success storie. Is it not hard not being able to speak to your children. I have the same problem sometimes. I than stumble over my words. But I agree... painfree moments or special moments with your children you cherrish even more!
Kelli/TN go away! said:
Hello,
I have 3 kids, 9 year and 15 year old twins. I finally have my life back from TN. As of 4/11/14 I had MVD surgery. You can say it was successful since I am pain free. But I will have to give the facial numbness credit for that. I cannot feel the top of my head down to the bottom lip. Compare to life before, the numbness is tolerable.
I am able to enjoy hobbies now. Cooking, being crafty with my daughter, and camping. Oh and talk! Before surgery I was not able to to speak more than 3 words at a time without TN spasms.
Kelli
It is wonderful that this group even is still active. I would like to hear more from other ones how they cope with TN and parenthood. The struggles of feeling tired and sick, but don't want to leave your family behind. How do your children react?
How did family life change after your diagnose?
I'm fairly new here, but I've been living with ATN / TN 1 (plus a few other cranial issues) for 3 years, now. I agree with Carmen - tell your children... help them to understand what you're experiencing. It can honestly be scarier for us as parents to deliver such crappy news than it is for the kiddos to receive it. Children have such vivid imaginations, and things that they don't understand can be much more frightening to them than blatant honesty.
My son is 14, and I've never hidden any of it from him. I learned that lesson early on... My late husband was diagnosed with terminal cancer when our son was only 8 months old. We decided that we would never hide it, lie about it, lessen it, or avoid it when it came to our son. We were always open and up front with him, and considering the gravity of that situation, I think my son was able to learn and grow and is a better person for it. He is very compassionate, and telling him about my ATN came naturally.
My son is old enough to understand that it really is important for him to do his chores, because that help is honestly needed. He helps me in so many ways. He even figured out how I like my coffee, so he can bring me a cup if I'm having a rough time. He heats up my heating bags and brings them to me. There's so many ways that he shows me understanding within this situation... I'm very lucky, and I'm forever thankful to have such an amazing person for a son.