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Parental Healing


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It helps me to know that there are parents have gone through this journey and come out whole on the other side. I feel like I am still stuck in the middle of it. My son has had PANDAS since age 5, though we didn't know what it was back then. I diagnosed it myself when he was 7, and found treatment starting when he was 8. He's now almost 10 and we just did our first HD IVIG 5 weeks ago and things are still in the "worse before they get better" stage (at least I hope they are going to get better). 2nd IVIG is scheduled in February. I argue with myself daily over what I need to do for myself. I am thinking at this point I should probably be on an antidepressant but can't bring myself to go to the Dr. I am not "depressed", but I certainly have stress and anger issues. My son's PANDAS presents mostly with EXTREME irritability and he's often angry, cranky, paranoid and generally pissed off at everyone and everything. I try so hard to be the calm force, but I snap and now I am also "chronically cranky". I can only hear how stupid and idiotic and how much he hates me over and over again so many times until I crack.. and then I cry and yell, even though I know it's not his fault. I'm crying as I type this because everything is so constantly close to the surface for me. I don't like attention on me. I just want to be strong and get things done with minimal fuss and attention. I feel like I shouldn't "complain" because as difficult as my son is, sooo many of you have kids in tougher situations. My daughter was diagnosed last spring at age 3, so I know we've got a long road ahead with her as well.

 

At the same time, i am generally a very positive, upbeat person. I don't like to whine and complain, and typing out the above felt a bit strange for me, but cathartic at the same time. I wish NO ONE had to deal with PANDAS, but I'm grateful to the other parents here for being so helpful to myself and others.

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Yeah, I think I'm immune to insults by now. Now when they say "Mom" I say "What did I do wrong now." My son said he hated me, wanted me to go to heaven...you just have to try to separate yourself from that and remember it's not them saying it. I know...a lot easier said than done.It's just words they use to try to convey the anger they are feeling towards what they are going through. They don't really hate you. It like a volcano of emotions (probably not even emotions directed to you) and it erupts with harsh words. They may not know what hate really even is. Like you, I like to be the strong one. I think I wish people would see when I need help and reach out, but I don't think I could ask for it. Unfortunately, due to the front (or whatever you want to call it) that I put up, people didn't see when I was in need, or they just didn't want to get involved.

 

I did find a very good cry when the kids are asleep and hubby at work would actually cleanse me of part of the sadness and even though I'd feel tired after, I would have some renewed energy to fight too. Allow yourself to cry. Realize you are dealing with a type of loss and you deserve to grieve. It hurts more to keep it all inside.

Edited by Vickie
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