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02/09/2011 08:08 AM

Breaking heart :(

SammieGirl
SammieGirl  
Posts: 113
Member

I found out something very heart braking this weekend… my 10-year old son is taking the lupus and RA thing a lot harder than I had thought (I knew he wasn't taking it well, but I didn't realize it was this bad). He is bipolar, he has his “normal” swings. Since December he has been getting a lot more depressed than usual. For some reason it occurred to me this weekend that these swings started around the same time as my first rheumy appt. My family is a very open family, we talk about anything and everything. When I asked him about what is going on and I brought up the lupus and RA thing this weekend he said “it is not ok.” When I asked him to elaborate the poor kid broke into tears and started repeating ‘I don't want you to die' again and again! When he starts crashing he will repeat stuff again and again and again and well, you get the picture.
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02/09/2011 08:32 AM
mumeva
mumeva  
Posts: 6155
Group Leader
I'm an Advocate

SammieGirl.....this must be so very hard on him....just put your arms around him and reassure him.....it's difficult enough to understand this illness but when a child is also suffering from an illness it's double hard. I will keep both of you in my prayers.

Eva


02/09/2011 08:35 AM
SammieGirl
SammieGirl  
Posts: 113
Member

I keep telling him time and time again I am NOT going anywhere! I have good doctors, I have bad days and all that means is we get to "watch" movies!(The joke in my house is 'Mommy, what movie do you want to sleep through tonight?') It just break my heart to see him like this.

02/09/2011 08:41 AM
J3man
J3man  
Posts: 280
Member

SammieGirl,Wow,that's a rough one. Please try and reassure him that Mommy's NOT dieing. I have experience with mentally challenged people(of various disorders)and it is VERY important that you make EXTRA effort to be positive around him,even when you are having a very hard time with your SLE. I know it's kind of like lieing,but important to his mental-state so that he doesn't dwell on death. When he gets down,try re-inforcing the positives,such as your marathon running,the help you are recieving,and ESPECIALLY how much his love and concern for you makes you feel better. Then,maybe his mindset will change from that of negativity to one of actually helping you as an important part of making you feel better. He needs to be involved in your treatment as a positive force. An he needs to know that he's an important part of you NOT dieing. He needs to hear this OFTEN. I hope this helps. My prayers are with you,your son and the rest of your family. Bryan

02/09/2011 08:50 AM
SammieGirl
SammieGirl  
Posts: 113
Member

Thank you Bryan! I am getting his therapist and school councilors and everyone involved! Sadly he reads body language better than more people can and even when I try to hide the fact I am in pain, he still picks up on it. I have gotten really good at telling him I am tried because of a hard day at work (which is partly true!). He knows I am still racing and I wouldn't be racing if I didn't feel like I could. We keep talking about my full Ironman next year and the fact that for the next year and a half I will be working my way up to it and I will finish strong and lupus will not stop me from accomplishing this.

02/09/2011 09:22 AM
Bunnyhugger75
Bunnyhugger75  
Posts: 2019
Senior Member

What a wonderful little boy you have. You have should be applauded for raising a kind and empathetic child Smile I know it is hard to see him like this, but at least he shared and now you can have an open dialogue about your diseases. Please keep us updated and thank you for sharing your story.

Take Care,

AMy


02/09/2011 09:53 AM
ncgirl
ncgirl  
Posts: 969
Member

Oh SammiGgirl, choked up and shed a tear over this. Bless his little heart and hugs to you girl. I know it must be hard for him (and you) dealing with his Bipolar Disorder and your RA/Lupus. My youngest will sometimes hug me and cry and say "Mommy I just want you to get better" (meaning she wants me to be the energetic go go go type of person I was). It tears at my heartstrings. My Mom got her the old classic Pollyanna so now we play the famous "glad game" like in the movie Smile For instance, if I am fatigued and can't go to the play ground with her and she is sad we will find something to be GLAD about. I will say "ok I am too tired to go to the park but I am glad that we can cuddle, give butterfly kisses and read books together this afternoon"... God Bless ~ Julie

02/09/2011 09:58 AM
SammieGirl
SammieGirl  
Posts: 113
Member

Julie - to make matters worse, my older son has Aspergers! Luckily I have a very strong and supportive family otherwise I don't know what I would do.

I will have to try the glad game with my younger kiddo (the older one isn't as empathetic - his condition makes him seem a lot less caring) and see if that helps.

I thought my heart was going to brake when he blurted that out.

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