(excerpts from communication while we are trying to figure out what is going on with Jeremy)
"Gosh, how does Jeremy feel? I think he is confused about what is happening, but mainly he knows he doesn't feel well. He just can feel that he catches his breath. Yet he can run and play sometimes, and other times he is just not able to. He tells me a lot that he can't breath, it's hard, and it makes me sad.
When we learned about the Iron yesterday Brian started giving him a tablespoon of natural molasses. Jeremy says its yucky but he wants to get better and he believes it will help. The heartwrenching reality is he knows how he feels and how bad it is. I have tried to protect him from the frightening diagnosis that we are waiting on. I really have protected him and been very positive, so the following took me by surprise. This morning after having the Molasses he was walking with Sam to their room and said to Sam, "Know why I have to have that stuff? Because if I don't fix my Iron I have to go to heaven." I was shocked.
Brian started to tear up and left the room. Jeremy came to me right after that and said, "Mom, if I go to heaven can I have a birthday every day?" I just knelt down and took both his hands and looked at his face. He had such a look of courage I can not even describe. Like he was trying to be so brave asking me. I answered "Yes, Jeremy, you can have a birthday every day in heaven, and Grandpa would be there with you, You and Grandpa would be best pals and do so many wonderful things together. You would be our angels and watch over us."
Then he said, "Can I have a star just like Grandpa?" I said, "Yes, the biggest one....but Jeremy you are going to pick a star for me long before you get to heaven." I told him that he had so many things to still do. Learn to play the piano (I started him in lessons today, no time to waste), go on a mission, marry your best friend, be a daddy, play sports, go to work, go to college....you know. I was pleading with him to know that he was going to be okay. I told him, "Jeremy, Daddy and I are going to do everything possible to help you feel better, and it is going to work, and you are going to grow up and be strong, and have all the fun in the world before you ever go to heaven." And then he said, "If I do go to heaven can I paint the sunsets with Grandpa." I nearly lost my pretend happy composure at that moment. I just said, "You can paint sunsets, Jeremy, and rainbows, and butterflys, and beetles. You will have so many important things to do and heaven will be wonderful. But Jeremy you have many things to do here first."
I reminded him that Bishop blessed him and that we would help him and he will get better. The look on his face said it all. He heard what I said but he bravely holds on to his wonder, "what will heaven be like for me".
...why is he even thinking such things. I am so scared. I feel so destroyed, my heart is aching and breaking at the same time. He shouldn't be thinking these things. I am protecting him, or so I think, from the worry and concern. But he knows how he feels, and he is frightening me. After I talked to him I went into the kitchen and Brian was in tears. I have seen him cry only a few times, when his dad died, and today. He is mine, my Jeremy. I feel so stubborn. I don't want to let him go. Last night he woke up and was clammy everywhere. He was having a night terror and wasn't really awake, shaking and really upset. I put him in a warm tub and bathed him, he gently woke up. Then I held him in the bathroom on the floor for hours, with tears streaming down my face, while he slept in my arms. I can't stand worrying. I just want to know so that we can fix it. He seems like he is just fine most of the time, but if you watch closely he doesn't breath very well. If he has an enlarged heart, and has had it since he was at least 2 years old, it is a very scary diagnosis. I don't know how to do this. Everything about him has always been different, from the beginning. But everything about him is "Just Jeremy". That's what I always say, he is Just my Jeremy, different but perfect in every way.
About a month ago I had a strong feeling that something was going to happen to him, I thought maybe he was going to die....dreams about him getting hit by a car, or something. I told Colleen to watch him carefully, I called his teacher at school and pleaded that she be really aware of Jeremy because I had such bad feelings. I made the doctor appointment a month ago because I noticed his breathing was getting worse, he was more agitated by it. I just thought it was asthma. None of this is what I planned. How selfish is that, thinking that I can plan everything? I realize that I am in the middle of some refinement for me and my family, but this just really sucks and That is the bottom line, it sucks.
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