Mother worry

Yesterday was the kind of wonderful day I'd always hoped to have when I decided to have children. Now that's not to say that these days are so remarkable. The amazing thing I find about both my children is that they are essentially happy.

I want to say despite the medical issues that rise and fall in our lives, but that's my deal. They seem a lot less affected in general. Special K says in a matter of fact voice "Well sometimes [Little T] goes to the hospital and sometime he doesn't."

Right now I'm not living under the constant shadow of life-threatening disease, but it's left its mark. I was never a worrier before, but now I've become one. When he gets a fever, I worry that he will have to go to the hospital. Okay, so far we're only one fever not going to the hospital versus four fevers landing him in the hospital. But when he got a fever on Friday night, I didn't take him to the ER despite the hemo doctor's recommendation, because he started playing. The ER is so germy. It's a great place if you're coding, not good if you're immunocompromised. Then he got better. So I guess I'm not so paranoid in that respect.

Today he has a rash all over his back and my first instinct was to worry and call the doctor. His doctor was on vacation and the other doctor who has seen him wasn't available today. Then I thought "it's just a rash." He doesn't have a fever. Sure he's whiney. But he was sitting around waiting for me. He hates waiting.

I used to be essentially happy also. And yesterday left me feeling more like I could be again. I see a long tunnel and happiness at the end. But I could never be happy worrying that my son's life was in danger. And I was miserable for months.

To be honest, I'm not sure if I believe that he won't be in the hospital again. No one can tell me if Kasabach Merritt will return or not. They guess it won't, but they've been wrong before. My son's tumor is particularly aggressive. I get different answers about how much the drugs affect his immune system and how vulnerable he is to the nasty secondary infections that landed him in the hospital before.

I wrote this because sometimes I feel this pressure to be happy, to be in my old life. Writing this all out helped me see it's just part of where we are right now. And it's okay. I do really enjoy the joyful moments with my children, but then worry returns.

I guess I'll live with worry a little longer. My worry level has definitely gone down too. I used to go up to code blue and actually take him to the doctor or ER and find out that yes indeed he was really really sick. Now I just worry a bit he might be seriously ill, but don't actually take him anywhere. This is in fact an improvement. As the months go by, I hope my mother threat level will go down further.