Daughter praying/asking God for me not to die:-(

    • Anonymous
      November 6, 2011 at 11:36 pm

      Hi everyone,
      I want to start off by saying that I went in for an early IVIG treatment this week, instead of waiting for next week (the 4 week schedule). I have felt so much better! I feel like the life wasn’t drained out of me only to go in at 4 weeks and have it slowly dripped back into my body with IVIG. I took the initiative and went in after 3 weeks, when I felt my weakness coming back what a difference a week can make when you get treatment sooner rather than later. I urge anyone who is feeling run down and sick, not to wait for your doctor to say its ok to go in for IVIG. Your body is the only one that can tell you when you need a treatment, not the days marked off on a calendar.
      Well, I am off the subject. The reason I am writing this is because when I went to my daughter’s room tonight to kiss them goodnight, I asked them to say their prayers. My 6 year old is very aware of my illness as she remembers the mom she had before things got really bad for me, so every wish she makes for birthdays, wishing wells, etc…. She wishes for mommy not to be sick anymore. It breaks my heart every time I hear her say that, but I thank her, I hug and kiss her and tell her that she and her sister are the reason that I fight so hard against my disease. They keep me from giving up. Tonight though, my 3 year olds prayers were of thanks for our family and for the weekend spent with mommy out of bed, then she said “God, please don’t let my mommy die”. “Please don’t take her from me because I love her so,so much. Please don’t let her die”. I didn’t know what to say…..?????? My jaw dropped open. I asked her “Baby, do you think mommy is going to die because of my disease”? She answered yes. I then told her that my disease changes me, it makes me tired, achy, grumpy, but it’s not going to kill me. Mommy won’t die because of this. Besides, let’s thank God for the wonderful memories he allowed me to build with you this weekend and pray for more of these wonderful days. Let’s pray and think of the positive things we want, the happiness we will live, not the things that unknown and out of our control. I told her that I was going to keep doing whatever I could to stay as healthy, happy and active as I can, but I needed both of my girls to think positive thoughts with me and not to dwell on the words of death or dying. We all need to focus on strength,health, happiness and that I needed their help to remind me of these wonderful things when they see me start to head in the wrong direction.
      Did I do this right? I don’t know if I handled this correctly? Can anyone please give me any advice as to how to communicate with young children about our disease? This is such a scary disease for me as an adult, I can’t even imagine what their poor little minds and hearts must feel when I sleep at the hospital every few weeks. They also know that I am at doctors appointments 4 out of 5 days a week. Then there was an oxygen machine by my bed, I take tons of medications and vitamins daily. This isn’t a disease I can hide from them. Especially when I am really bad and spend days at a time in bed, sleeping or in agony. I just don’t want them to worry about mommy dying. It breaks my heart that at an age when kids feel they are invincible, mine are worried that their mommy isn’t going to live much longer.
      Please, please, I am begging you for advice. I don’t know what to do.? I am at a loss for words, answers and comfort. I would like to sit down with both of them soon, since I am having a good reaction to my last treatment and try to relieve some of the stress they are feeling. That is mine to carry, not theirs. How can I make them understand that?
      Stay well my friends,

    • Anonymous
      November 7, 2011 at 11:26 am

      Hi Flo,
      I would say less is best when explaining to children. Omit phrases about dying. Perhaps just say that mommy is getting medicine that will make her strong and be repetitive about mommy is getting better with the medicine. And tell not to be afraid as you aren’t afraid and that you feel better and better with the medicine.. Good luck to you.

    • Anonymous
      November 7, 2011 at 5:27 pm


      I sent you a PM with a suggestion. It’s been a while since my kids were young so I don’t know how well I remember how Carolyn and I handled things. 😮

    • Anonymous
      November 7, 2011 at 8:14 pm

      Hi Flo,

      Your kids are so precious, I know the Lord hears their prayers and will answer them, he loves them and you so much. I really like laurel’s suggestion, just talk more about how the medicine and the Doctors are helping you to get better and not about death and dying, the more positive you are the more reassured they will be. I think the way you handled it was great! I will also pray for you and your little ones, you are going to be around a long time for your kids and your family! I thank the Lord for Ivig even though I personally have not started it yet, it has helped so many. I’m glad you are feeling better. Blessings, Jan

    • Anonymous
      November 9, 2011 at 3:07 pm

      Children are such a darling thing. My grandaughter did me the same way. I am going on the third year now and took her to Galveston with us this year. She was really quite concerned about my fatique. After spending a couple of weeks there she found that I recover after a little rest, 3-4 hours. I know it is so difficult to tell our children not to worry, they see and hear all. Just keep them in your prayers as they keep you in theirs. We will include you in ours.

    • Anonymous
      November 10, 2011 at 3:49 pm

      Awwww… my heart goes out to you!