You sound like an amazing woman. I’m terribly sorry for the loss of your sons. Living with the fear that a child will die is something that every parent has but yours is heightened by two things: your sons’ deaths and your daughter’s special needs. That said, I would have a heart to heart talk with your pediatrician to assess the real risk of your daughter dying prematurely. This is important for you because you do not want any fears exaggerated at this point.
Regarding your current relationship with your daughter, it is quite normal to emotionally protect yourself from pain. But here’s a question that you must ask yourself, “Will losing her be more painful if I allow myself to get closer to her now?” The truth is, her death would be terribly painful no matter how close you were to because the deepest pain comes from the loss of the child and not from the loss of closeness. In fact, being close to her might make her death easier because you would look back on the relationship and have no regrets.
I want to encourage you regarding something else. Anticipation of hurt makes us think that we can’t “handle” that pain when it comes. But you know that you can handle pain because you already have. That means, that if she did die, God forbid, you wouldn’t fall apart. But you are anticipating that you would. God would carry you again as He has before.
I am a worrier too and I want to let you in on a mental trick that has worked well for me over the years. As my four children were growing up, I felt terrified at times that one might die in a car accident, from leukemia, you name it. Fear enveloped me but then I decided to “allow” myself to worry at certain times. For instance, I would tell myself that I could worry as much as I wanted on certain days. On the other days, though, I was going to live with the belief that nothing bad could happen to my child. For instance, one afternoon I would allow myself to believe that nothing bad was going to happen to them and I would give myself permission to worry as much as I wanted the following morning.
Over time, I found that I could relax and enjoy my children because I “scheduled” worry if you will. I didn’t tell myself to stop worrying altogether, I just contained the worry. I believe that you can do this too. You will find that during the times you “allow” yourself to believe that nothing bad will happen you will get closer to your daughter. The truth is, whether you allow yourself to get close to her or whether you don’t isn’t going to change the time that she will die AND it isn’t going to change the amount of pain you feel if she dies.
Giving yourself permission to have emotional reprieves like this let’s you feel less stressed. And it also makes you realize that if it is “safe” to believe that she isn’t going to die for half of a day, then you can feel that way for a full day, two days and then eventually a week, etc.
This really does work so give it a try. Also, please make an appointment to see your pediatrician alone to discuss your daughter’s real chances for living a full and healthy life. They are probably a lot higher than you are letting yourself believe.
Here’s the best news: as your daughter grows older, you will gain more confidence that she is going to outlive you. I have worked with hundreds of mothers who have lost children and struggled as you are with this same fear. Most of them eventually let go of their fear of the living child dying prematurely and I know that you can too. Let me reiterate what I said earlier, your fear and effort to emotionally distance yourself from your daughter does not determine when she will die.
So, let yourself become closer to her. She hasn’t done anything to cause her brother’s deaths and she doesn’t deserve for you to pull away from her. God’s got this, so trust Him to have your back. I promise, He will.