Friday, January 18, 2013

Little things....

Okay, so I know it's been awhile, but things have been so up in the air in our lives that having a minute to even form a coherent thought, much less put those thoughts out for the world to see and have them make any kind of sense is pretty damn near impossible. If you only knew, you would understand.

Sarah's life literally hung in the balance for awhile, and does still, I guess, although we are much more able to breathe a sigh of relief now than we were even just a few weeks ago. We are at the end of the road, where there are very few options left, and realistically, Sarah shouldn't be doing as well as she is. It's by the grace of God and the strength of the spirit He gave her that's the reason she's alive right now. There were some especially difficult days when the daily shots I had to be giving my incredibly brave daughter were not working and I had to seriously consider the possibility of having to plan a funeral. There were days before that when the daily shots were making her crazy, making her throw raging fits where she screamed at me that she didn't want to be with me, wanted me to go away, aggressively attacked me. Her gums swelled up so much from the cancer that they were surrounding her teeth, and she couldn't eat anything. She lost so much weight her clothes were literally falling off of her body. Even the clothes from last year didn't fit. I had to buy baby food just to get her to eat, and thank God for my mom's bean dip, which brought her back to her normal weight with it's fatty deliciousness. If this damned cancer isn't going to take my baby one way, it will take her another, but what choice do we have? I will not give up on her.

Add to that the fact that my six year marriage is now ending for real. We have been separated for a year, I thought we were trying to work things out, but apparently, we're done. The finality of it is devastating. I did the best I could to make it work, and I needed to be able to tell her that when she asks. I needed to be able to tell myself that, and now I can. Sarah is taking it rather well for a five year old. I have tried my best to make it as easy as I can on her. I am holding on to my sanity in any way that I can.

I know this is all very vague, but I just don't have the energy to get into months' worth of details, nor do you have the kind of time to swim through all of that when it probably wouldn't make much sense anyway. Long story short, there's a lot of shit going on, none of it easy. How I have avoided the little white room with the padded walls is beyond me. I have had my days over it to be sure, and without a few key people in my life, The Essentials, I would not have made it through some of them. Y'all know who you are.

There are days where I think she may not survive this, days where I find myself on the outside looking in and my heart weeps to think that these are the "end days", that I may very well be right now, as we speak, living towards the end. Then, there are days where I think that she may actually survive this, that one day we will both wake up to find our happiness someplace different, someplace new, anywhere but here, stronger and wiser for our experience. To be able to rise from the ashes of this shitstorm, and get to walk away with my daughter in my arms would be more than I have any right to ask for. But it's also all I have left to hope for. Cancer has cost me my job, my career, "friends", family members, my marriage, my independence. I have nothing left except this little girl. I don't know what I will do if I lose her, too.

But the way things are looking right now, the future I envision may very well be a happy one after all. Sarah looks amazing, she seems to be feeling amazing, her hair is growing back, she is eating so much better now and putting on some of the weight she has lost. Her blood work is holding steady, she is fighting this demon and she is winning, at least for now. Much to the doctors' amazement, with the help of a TON of natural supplements, and oral chemo, her gums have reduced back down almost to normal, which her doctor said wouldn't happen unless the chemo started to control the cancer. There is much to be grateful for. This one thing alone is everything.

This is good news for today. We are literally living day by day now. Tomorrow may bring better news, worse news or more of the same. In the mean time, I am enjoying the time we have, I am spoiling the shit out of her while still trying to maintain some discipline, because if there is hope, I do need to teach her how to live in the real world where she will hear the word "No" on occasion. We bake cookies. I make pink pancakes every morning with peaches. She eats bean dip for the other two meals with Fritos, and I let her. She makes a mess in every room, and I let her do that, too. I am enjoying the now, because it may be all we have, and I want no regrets. I need to be able to say that I did everything that I could, that I was the best mother I could have been to this little girl.

So, this week, we went to Craig National Park in Brea and fed the duckies, for the first time that Sarah remembers. She had an amazing time playing with her friends and just being a normal five year old, except for the part where I damn near electrocuted us both trying to get her off the damn slide! I am no longer allowed to touch my daughter because the static electricity seems to like me and I keep inadvertently zapping her when we least expect it. But I digress. She fed the ducks. She rode her bike, she played on the swings, and the sound of her and her friend, Savannah's laughter as it carried on the breeze was the most amazing sound. These are things that many parents take for granted, but to a cancer patient, these are small miracles, and we never know how much they might cost us the next day. The smallest thing, like Sarah being able to brush her teeth with an actual toothbrush for the first time in two months? Not just doing it, BEING ABLE to do it. Most things that we do without thinking, most things that we hate doing or even find tedious become tiny miracles to someone who can't. They are even more miraculous when tinged with the thought that there may come a day when they never will again.

These are the dark thoughts that come to plague me, but they are real. To sugar coat them just to make you more comfortable would be an injustice. In order to create awareness, I can't sugar coat this. I do a fair share of that, believe me. To truly depict the reality of what these children have to go through would give you nightmares. But if I have given you even a taste of what it's like, made you think about childhood cancer in a way you never have before, then I have served my purpose.

Tomorrow, we are going to visit our cousins, and Sarah is excited. It fills my heart with unending joy to hear her running all over the house singing, "We're going to feed the duck-ies!" Or "We're going to see Sofi-a!" She is getting excited about her life, which means I can, as well. I can push out those dark thoughts and start to envision a better life of happiness and fulfillment and small miracles for both of us.

1 comment:

  1. thank you for sharing your thoughts...stay positive and keep doing what you are doing for your baby girl! May God Bless you both!!!Sending Sarah healing vibes!!! Miracles are possible!!!