I have tried to start this so many times and I just do not know where to begin. How to write about something so terrible? The child I yearned for, worked so hard to achieve and almost lost to a premature birth is now battling cancer. It is not fair. It is not right. It is just wrong all over the place. What did we do to deserve this, as I know she did absolutely NOTHING to deserve what she has been through. It boils down to my own selfishness. If I had not pushed so hard for children, then we would not have gone through the whole IF roller coaster. If I had pushed harder for adoption, then we would not have gone through the whole NICU roller coaster. I would not have my beautiful curious hilarious girl, but she also would not have suffered everything she has in life. She must be a Buddhist for; all of life is suffering. Yet, she is so quick to forgive. She cries and tries to squirm away when I give her a shot, but when it is all over and that H*llo Kitty Band-Aid is firmly attached to her leg, she clings to me and snuggles against me because she is convinced that I will make it all better. She has more faith in me than I do.
T and I often spoke while she was in the NICU about which side of Karma we were seeing. Was it the bad side since we were living through the nightmare of hospital visits, ups and downs in oxygen saturation levels, ups and downs of feeding tubes and residuals, etc? In the end, we decided that it must have been the good side of Karma since she came home. Now, T is wondering if we are back on the bad side again. My theory is that maybe we are on the good side of Karma since we keep going through horribly shitty circumstances but coming out on top.
Did we go through infertility and the NICU to ensure we appreciated our child? Let me tell you, in our family, the sun rises and sets over this child. Is the cancer a way to make sure we do not start to take her for granted? I cannot even begin to explain the emotions that go into creeping on tiptoes into your sleeping baby's room to check that she is still breathing. You are straining your ears for the slightest sigh to relieve the fear that this is the time that you will find her dead. Will it be this time or maybe it will be next time? You listen, holding your breath but unable to hear over your own thundering heartbeat. You get closer and closer, panic slowly rising, wanting to put your hand on her back to make sure that she is breathing, but gently and quietly so as not to wake her up! There lies the conflict. Make sure she is alive, but do not wake her up as you check. I cannot explain what that does to the psyche. The heart/apnea monitor alone did so much damage that it was MONTHS before we heard the microwave beep, or a truck backing up or certain cell phone ringers that didn't throw us into a panic even if she wasn't there at the time. We finally got over all of those things. We were settling into life with a toddler (as "settled" as that can be) and then cancer happened.
I am sad for her and for us. I am angry that there is no way for me to make this go away. As a parent, you swear no one will ever hurt your child if you can help it. I cannot help this. I can only hold her close and do what I can to advocate for her care. I wish I could spend more quality time with her but we have my insurance through work so I need to keep my hours up at full-time. They have been flexible with my hours and very understanding and concerned for her. I do get to go to doctor's appointments and chemo treatments. I wake her up and put her to bed every day but those are not her finest hours (Tired + Toddler = Tantrums). She is with my mother all day when I am at work. This is a fabulous arrangement and I could not ask for better care for her, but I miss her!
Blehck! There is so much more, and this seems to have rambled off track here and there. Suffice it to say, for now, this sucks. However, I do believe she will come out on the other side. I do believe that she will be a cancer survivor. I am just so sad that what we want for our daughter's third birthday isn't cake and presents and a clown or pony rides but more than anything, ever…remission.