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.