The past week has been rough. After 18 months of 24/7 baby care, to wake up on my own, without having to get up when the baby wanted, is a strange feeling. I spent so long wanting and waiting to be a mom. I felt like it was my calling, my destiny, my dream job! Even with all the though days and the stresses, the sleepless nights and the tears, I knew it was what I was supposed to do. All I had to do was look into her eyes, and I knew that I was doing a good job. Now I just feel lost. I lost my job, my purpose, my motivation. I feel like I failed - not as a mom, but as an "employee." My job was to care for and protect her; give her all that she needed, and help her be a good person. But I couldn't keep up with the evil that was inside her.
I feel like there were so many mistakes made since the end of her induction chemo. When we started informing ourselves of our other options, we were so overwhelmed. It was hard to focus in on the next thing to do. We thought we were ok, that we would be able to take a deep breath and have time to make an educated decision. If we had only known then what we know after doing so much research. I think this is the most upsetting. If we had started informing ourselves just a little earlier, started researching the options and the treatments available just one cycle before, we may have been able to make a decision that could have changed her course of treatment completely. I feel so responsible for not pushing harder and faster and staying up nights reading at the beginning. I know that there is no way of knowing if it would have made any difference, and that her disease was so aggressive that it may have changed nothing, but I can't get past that felling.
We are told to trust doctors, that they know what they are doing. We are told that there is a standard treatment, and that's what you do. Everything is immediate, and nothing is optional. I have found that this is not true in the world of cancer. There are "standard treatments," but they are not the only option. I wish that we had been told that there were other places out there that did other things to treat this disease. Especially at the very beginning a little direction would have been so appreciated. If we had known to look farther than our own backyard then, we may have chosen different treatment, or we may not have; it may have changed everything, or nothing; but at least we would have felt like we had made a more informed decision.
I am a true believer that everything happens for a reason. I know that someday, we will look back and say "that's why she went through what she did, to get us here." Nothing happens by chance; decisions that are made have a course. And, although I feel that I have a lot of luck in my life, I know that, in time, everything leads up to something bigger.
But right now I'm feeling purposeless. I don't have a baby to feed or diapers to change; no doctors appointments or treatments to schedule. I don't have to plan around nap and bed times; I don't have to pack up a diaper bag and food to leave the house. I can pick up a purse and keys and go out at 9pm, leaving only the dog at home. Its a strange feeling. It feels as if I've gone back in time to before Saoirse came into the world, before I was pregnant, but I have the knowledge of the past 18 months haunting me. I had my dream, my baby girl; so strong, so independent, so happy, and it was all taken away too soon. Now its waiting. Waiting for answers, waiting for the next project, waiting for that aha moment when everything lines up again. I hate waiting. I feel myself longing to see friends with babies so I can play with them. Watching the kids at the mall is joy and torture all at the same time. I saw some women arguing in the parking lot over how one of them parked their car (it was crazy, I'm surprised there weren't punches being thrown) and all I wanted to do was walk over and tell them to appreciate that they still had their children and grandchildren with them this Christmas. There is such a hole in my heart.
And so many other moms are having their next kid. Granted popping out another one is not the answer to our problems, but it would have been nice to have the option. Because of the treatments that I've been through, I have to wait at least two years from diagnosis to think about getting pregnant. It's more of a precaution than anything else. If I were to relapse while pregnant, it would be enormously tough to decide what to do. There is always the risk, especially since I had pregnancy onset Hodgkin's, but after the two year mark, my oncologist says it will be less of a risk. Back to waiting.
Time to reboot. To give ourselves a break from the "real" world, and focus on us for a change. Then we will take on the world. Show everyone that Saoirse meant something, and that she will change the way the world sees childhood cancer. Maybe I'll become a parent advocate and help other parents sort through the wash of information at the time of diagnosis. Hmmmm.....that might be a good place to start.