I wondered what you meant in your reply to my "Awesome Day" post in TAO by the message "From one heart mom to another..", and now I know what you meant!!
You have dealt with some stuff that we have been spared. I know that prematurity and severe developmental delays on top of your son's other issue's must magnify the complexity of every issue you face. I am amazed to read he is the smallest baby to ever survive heart surgery. That is increadible. At 8 pounds ds was the smallest baby I had ever seen have heart surgery, and I can't image what that must be like with a 1 pound preemie.
I can only share that everything you wrote in terms of your own frustration and pain sound totally normal. I have been there and still am there with much of this. I wish I could give you a BIG hug, because you really aren't alone, and you should never feel guilty or ashamed of your anger and frustration. I am going to ramble here and I hope it is of some help to you if I do...
For me, it was healing to get to a point where I could say "This was NOT FAIR, it is NOT okay with me that my child has suffered, and he DID NOT DESERVE IT." Saying that without looking over my shoulder with guilt for embracing such a statement has really helped. For years, it kept me very down when other parents felt healed by thoughts such as "This is all for a reason" and "These special children are created this way for special parents" Etc. For me, and my dh, there was NO REASON good enough to justify the horror we have seen our child go through just to survive. Handing over your baby to have his chest sawed open, his heart and lungs stopped, his blood drained out and into a bypass machine..essentially, inducing a controlled state of death...this was so traumatic for us that I still cannot dwell on the image of *my* child in that condition for more than a brief second without being overcome with anxiety and grief. We have done that 3 times and every time, having to accept the spector of my child in that state was so grueling and agonizing, I felt like my spirit was dying. My will was drained so totally, and on top of that, I had to force myself to keep up a vigil for ds, to see him through this, to face this with him, to never give in to the urge to run in horror from what was happening. I can never remember exactly how we got through some of the things we went through, it was never an conscious "reason", just an unconscious drive to keep ourselves available to ds at all times and do whatever we could to minimize the suffering he was going through.
I no longer believe that a higher power makes personal choices for our lives (such as giving a child a birth defect) and I don't believe in karma anymore (that this happened for a reason related to past issue's). Believing that way brought me endless grief. It heals others, but it did not help me.
I accept that my child has a birth defect, and that survival has hinged on a high degree of surgical intervention--and alot of pain, tears, and grief for all of us. However, I don't believe it is okay that this happens to children. It happens, but it isn't fair. Not to me. He deserved the healthy childhood I had, that his friends have. He did not get that, and I don't know why. I no longer look for a reason, because finally, I have accepted that there is no reason (in my opinion) that this happens. Beleiving that there is no specific reason why children suffer has made it easier for me to accept this as a part of human life that we must learn to survive so that we can enjoy all the good there is around us as well. This is a universe hinged on opposites...for everything there is an equal opposite. Light/dark, alone/together, good/evil, pain/contentment. I feel that suffering is a random force we must live with in order to enjoy it's opposite...happiness, and contentment. That some get a disproportionate share of suffering makes some sense to me given that others have increadible levels of good fortune. Yes, of course we do influence much of our lives through the choices we make. However, we are not always given a choice. A book that helped me form my thoughts on this issue was "When Bad Things Happen to Good People" by Rabbi Harold Kushner. He lost a child to Progeria (rapid aging disease), and while the book is best suited for someone with Jewish or Christian beliefs, it certainly helped me and I have no religious particulars. I would recommend it highly ( I listened to it on tape, read by the author).
Most of the time I don't dwell alot on all of this. We are grateful to have ds and to see him grow and thrive and discover things he enjoys in life. Still, it surprises me when my grief can surface. I was describing a particularly difficult experience we had during one surgery, to a friend I was having dinner with. Sudden the memory of it brought back a surge of grief, I lost my voice and tears were streaming down my face before I even knew it. I really was okay talking about it, but the grief is always there, because there is no escaping the pain we feel when we watch our child suffer. It is always one of the most visceral and painful experiences a parent goes through, and I accept that I might always carry grief that close to the surface.
It is also additionally complex to carry the priority of attachment parenting through an experience like this. Hospitals are run on a large degree of detachment. Detaching from the experience is how staff gets through the business of caring for sick babies, and on many occassions, a parent determined to stay focused on the needs of the baby and refuse to sacrafice contact or responsibility for the emotional needs of the baby is treading foreign and hostile waters. Attachment can threaten those who have detached, and defending my right to parent ds, regardless of where he was staying, was exhausting his first years.
I also have felt that there is a degree of post traumatic stress that parents experience after seeing their child in a suffering or near death condition. How can you not?? No car crash or attack by a robber could be more frightening than seeing your child in pain and being helpless to stop it. If those other experiences can induce post traumatic stress, of course this experience could.
I will shush now, I really wanted to get some of this off my chest because you are so NOT alone with how you feel about your son. I hope you will email me email@example.com