I have been there!

Anonymous
August 1, 2008 at 8:27 am

Hi Stacy! Having 3 small children when I was diagnosed with Lupus, I saw many many days of missing out on their childhood. I tried really hard but many times I was just to sick to do anything with them. Especially school functions. I had no choice but to sit down and tell my children that I had an illness that kept me from being the mommy I wanted to be.
As long as I was in my home, I was able to be their mom and they had many friends over. We would make homemade Ice Cream, plays video games together and watched many movies together. But taking them out was hard for me to do unless my husband was around.
I felt the same way as you did! I’m much older now and my children are now grown and married except one and she lives out of town and teaches school.
I sat down and talked with my children and explained to them that I was very sick, but promised them that I would not leave them by passing away. But they would see mommy sick alot.
My children when smaller actually helped me alot and felt useful. Their teen years though were tough dealing with. But they adapted to me being sick and pretty much had a normal childhood.
My first child that graduated from high school. I begged GOD to let me be able to go and not be sickly. I got my wish too!
You will learn your do’s and don’ts with your children and take each day one day at a time. Excepting this will be much easier on you in the long run than feeling guilty.
I had to place it in my mind that I was not the only one in the world that had the same problem as I have. Then I thought about all these people in the world that have birth defects and get married to have children. They do things with their children as if nothing is wrong with them. Mainly because they excepted their disease and faced it with a fight instead of feeling guilty.
I find it when we are normal to then get sickly we end up feeling guilty or have pity parties.. for I sure did! It’s much harder to face than someone that has already been born with a birth defect. Mainly because we experienced a normal life until we got sick.
I had to except my problem and after I did, I was able to move around my problems by solving them in a different light. So my children got used to me being sick. They saw it alot while growing up. But each of them did okay. And had a normal childhood growing up. They knew I could not take them places and found other means of getting their way!
It is frustrating though. Very frustrating. And I regret missing many things with them at that age. But we managed as a family!