We were dealt the cards we were dealt when we had our daughter, would I change anything that has happened to us, maybe. What would I change? I would change the part where she needed open heart surgery. I remember them throwing all this stuff at us, "Your daughter has Down Syndrome, she needs heart surgery, she will never do this, she will never do that, she may get this illness and that illness." I remember being so very angry with God, and saying Down Syndrome wasn't enough? heart surgery too, why, why were we being punished, what did we ever do in our lives to have to endure such pain and heartache.
People said I was taking it so well, I was really holding up well, considering the circumstances. I had to be strong, I had to for her, but on the inside I was dying, screaming, I would use my shower as the time to let it all out, to cry my eyes out. It got more terrifying and frightening as each day passed, knowing that it was just a matter of time before they would have to cut her open, I couldn't bear to think about it, maybe it was denial, maybe it was just my way of coping. I felt like a robot for the first year of her life, therapies, doctor's appointments sometimes 4 or 5 a week, I was running on empty most of the time.
I was knocked into the realization of what was happening when we arrived at one of our numerous visits to the cardiologist and she hadn't gained any weight. He got the surgeon on the phone and they declared the surgery would be the following Wednesday, there was a medical student in the room with us and I don't remember what his name was, but I remembered he stayed in the room with us to make sure I was okay. He was a stranger but he was so kind to me, he stayed and held my hand and said it was going to be okay, at the end he gave me a hug and said, I hope that was okay you looked like you needed a hug, he will never know what that meant to me that day. I feel terrible that I have no idea what his name was but I like to remember him as an angel who helped me when my world was crumbling around me.
Once she had the surgery I probably got about 8 hours of sleep that whole week, and her surgeon kept telling me that I neeeded to sleep. It was very easy for people to give advice or tell me what I should do, but until they walked in my shoes they really had no idea. I expected more from people, I expected them to be there more for us, but they weren't, not really, not the way I needed them to be. I realize people have their own lives and I shouldn't expect people to just drop everything and be there for us, but I guess it would have been nice, to have more support. I will never be able to repay the people who were there for me, I can't thank them enough.
People tell you all the time, oh I know how you feel, or try to tell you their situations. NOONE knows what it is like to have a baby with Down Syndrome, noone knows what it is like to have you 3 month old need open heart surgery UNLESS they too have been through it. Things are better since she made it through the surgery, I still have constant fear that they will find something, she will need another surgery, that she will develop other health problems. It was hard for me to change the way I think, in fact I still have a long way to go, I have to start living in the moment more and not worrying so much, I have to appreciate each moment as it comes and live in the present instead of looking ahead all the time. I know that this is not about me and it sounds completely selfish of me to sound as if I am complaining, I am not complaining really, I just think that it would be helpful to other moms to know that whatever you are feeling it is okay to feel that way, you need to go through whatever you need to go through to get to that wonderful place of hope.