About Me~, Uncategorized



He knows the routine by heart now. He knows the way around the building like a seasoned veteran. He pushes me in my wheelchair without any need of help from anyone . Fifteen ,going on thirty, he makes the turns in the hospital warrens completely sure of where he’s headed . Left , right, up , down, to the elevator with the big yellow circle. Up to cardiology. Sign in, give your papers to the nurse, settle down to wait. They call his name, and he pushes me completely confidently, not that he needs me, but he knows that I need to know what they will tell him when he goes back there. He turns right for the EKG room , and takes his shirt off without being asked. He smiles at me , and asks me if “I” am alright? I am , so we go to the next room to get his pacemaker checked by the Medtronic expert. This is his second implant to have had. He got his first one when he was 9 months old. His second when he was 7 years old. He has a rare heart condition called Complete AV block of the heart. So he’ll always have to have a pacing unit , he knows. He doesn’t seem to mind, doesn’t see himself as disabled. Sees it as more of an aggravation than anything else. Time out of his busy boy’s schedule . The Medtronic ladies come in , and he flirts with them , of course, like any boy with his shirt off should. Then we wait for the doctor . It’s a bit of a wait so my big boy gives me his special smile and wants to know if I’m okay? He’s concerned that all this has taken too long, and I am worn out now. I tell him I’ll be fine , a little while longer. Finally, the doctor comes and does the regular exam , and tells us , we’ll be alright to wait and get a new unit until Summer . My son seems unfazed as usual , his world hasn’t changed at all, he is just worried over wheeling me out to the van so I can get comfortable. I am suddenly struck with wonder . Wondering when he grew from a toddler needing , needing , to this half grown man worrying worrying over me? When did I miss that drastic of a change? Or did it come about slowly somehow, slipping by me like quiksilver through the days til suddenly there he stands? I’m not sure, but it has happened just the same. And something tells me it will happen again just that quickly and again , and again, til all the silver has gone from the glass and his own big boy stands there with the smile, asking ” Are you allright?”

About Me~

It Is What It Is~

Never regret. If it’s good, if it’s wonderful. If it’s bad. It’s experience. ~ Victoria Holt

Worrying is like rocking in a rocking chair. It gives you something to do, but doesn’t get you anywhere. ~ Grandpa Jones

I have lupus. I am 33 years old. I was diagnosed with this terrible disease at age 19. I had just given birth to my son whose heart was damaged BY my lupus. They told us he might not live. They said that IF he lived, he would be brain damaged, and never walk, talk , learn to read or be “normal”. They told me about 7 years ago, that very soon, my heart would be in complete heart failure, and that even if I took all my medicines, I would not live for very long.
I had someone ask me if it made me angry. And I had to think, “Was I angry?” No. Not really. Sad, yes. Disappointed. Life definitely was NOT turning out like I had planned. Frustrated. Confused. But, not really angry. I know people think I’m in denial about it. But , really what would anger accomplish? It is what it is. It is no one’s fault. I told the doctor “I just got dealt a lousy genetic hand of cards.” I have good days and bad days. So do people who are “normal”. It’s life in this crazy, mixed-up, wonderfully wild world. Being angry is not a very productive emotion for someone with lupus. It actually makes you feel worse physically. Stress is not my friend! So, if I get caught up on that treadmill of “feeling sorry for myself”, I try to remember there are people who are actually in worse shape than me. It’s all experience and worrying is not going to get me anywhere.
Oh, and by the way. My son is 13. He just passed the 7th grade test. He has a pacemaker, but he walks , talks, reads, and is just about as “normal” as ANY teenage boy. (Heh, heh!) I am NOT in complete heart failure. I DO take my medicines, and yes, the days are challenging. But , I refuse to give up. I refuse to regret even a single minute of a single day. I’m living for the experience, and hope you will too!