Due to exhaustion, pain and the fact that people with Lupus shouldn’t be out in the sun too much, I haven’t been to the beach in about two years. I’m not feeling any better, in fact, I’ve been doing a bit worse lately. But tomorrow, my mother, son and I are packing up and driving the hour or so excursion to the Jersey Shore. We are going to Ocean Grove, which is a lovely town and has a nice family beach.
Why am I doing this when I feel so sick? Because I want my child to experience building sand castles, walking along the shore, and dipping his toes in the ocean. Because I want my child to be able to take advantage of being near the Atlantic Ocean and because I don’t know where we will be next summer. Because I want him to have the same happy memories of the beach that I had when I was a child.
So tomorrow we are going to get up when Tyler gets up and just get ready and then get on the road and I am scared to death. I wake up swollen and hurting and exhausted. I won’t be going back to bed, letting my pain medicine work like I usually do, I won’t be trying to get any more sleep, despite the pain, migraines and intrusive thoughts that invade my nights.
My mom is going to help me but I worry about parking, despite having a handicapped placard. I worry about carrying things, walking to where we will camp out on the beach and having enough energy to play with my son. I worry about how I will be able to drive back. I worry about how I will feel on Sunday, and maybe even Monday and beyond.
If you are reading this and happen to be healthy you might be wondering why the Hell I am bothering and that I should let my “mom guilt” go, and that my child would grow up perfectly fine if he never even saw the beach in his young life. If you are reading this and happen to be a sick mom, you might see my logic and know that sometimes you’ve got to put aside your own pain and fatigue for your child and do something extraodinary and seemingly impossible for the sake of the both of you.












Good luck, and I hope you have a wonderful time. Sending spoons your way!
.-= Catherine´s last blog ..Reasons to be Grateful =-.
I’m glad you’re going to tough it out; it sounds like you really want to. I hope it goes well.
I want you to know that I never saw a beach until I was in high school, and I survived just fine
Coming from a poor family, I had a lot of firsts as an adult (first dinner in a restaurant, first steak, and more) which I loved, because it was Mr.4444 who introduced me to most of them. Whatever you don’t get to show your son will be something for him to explore with excitement as an adult. That said, I understand your wanting to share the excitement with him. I hope you feel up to it today 
.-= Mrs4444´s last blog ..Saturday Sampling- August 14- 2010 =-.
I totally get this.
.-= Mama Zen´s last blog ..Todays Stock Tip =-.
Oh, I will be thinking of you guys! My little sister (she’s 40) has lupus and rheumatoid arthritis also. She has been doing pretty well but has flares when she has to take that awful medicine and is down for the count.
She has 3 kiddos and they were all in elementary/middle school when she was diagnosed.
I hope you guys have a wonderful day.
.-= Cate´s last blog ..Yes isn’t always easy…2nd Look Saturday =-.
i hope your trip goes better than you are anticipating! And you son will really appreciate you doing this for him, even if he doesn’t express that right now.
I am reading this and wishing you nothing but luck and fortitude.
.-= Unknown Mami´s last blog ..Sundays In My City =-.