Cole's fever keeps spiking higher and higher and his respirations have been all over the place tonight. They are entirely too high for my comfort zone, that's for sure... Even the nurse seems worried about him. *insert uneasiness here* This is NOT fair. NOT. I don't know what this "thing" is that has my baby (and neither does anyone else at the moment), but I wish it would just STOP. How can this be happening? Negative cultures. Negative blood tests. Negative EVERYTHING. And yet, the doctors and nurses seem unsure, and truthfully, a little nervous. Cole is currently a very sick child and they are treating him with some seriously powerful antibiotics... Really? I should sleep? Umm. Yeah. Get me some coffee; we're going to be here awhile... Michael Bolton could sing me lullabies until he's blue in the face, but he had better pack a sleeping bag for when he crashes first... Cancer moms often don't sleep. Not when things are SO uncertain. And scary. And nerve wracking.
Having just literally bawled my eyes out from stress and being overtired... let me tell you a few things that I think mothers should never have to do. (And I apologize ahead of time, but this is the only place that I can 'get it out.')
First and foremost, mothers should never have to:
Bury their babies.
I hugged a friend today in the pediatric intensive care unit just moments before her 7 year old daughter lost her fight against neuroblastoma... Can you imagine? We met because we
It's not right...
Next, mothers should not have to:
Climb the walls while watching their child's respiration rate climb on the monitor because of high fevers that are still completely unexplained.
This is where I'm at at the moment. We have been here ten days straight---and nobody has any exact explanation as to what is happening to our son. Our baby. Our life. The doctors (who are wonderful) have treated for viral, bacterial, and fungal infections. The cultures are all negative. And yet, Cole's up over 102 degrees and his respirations keep bouncing up and down. And don't even get me started on the fluid he's retaining... This is NOT fair. Not even for a moment.
And third, mothers should NEVER have to:
Live in a hospital & have to try and make it feel like home.
Really? Does any child deserve that? Our family has spent SO much time here over the course of the last six months that I have a suitcase full of Cole's decorations just for making it "feel" like home. And the truth is, it doesn't matter how much freaking decorating I do. I could call Martha Stewart herself and have her paste green decoupage on the wall all day long! This place would still be a hospital... It would still NOT be home. And I would still want to tweeze my eye brow hair out one-by-one to make sure I wasn't dreaming about this being our current reality... (Real cup of sugar I am tonight, hey? I told you I had to get it out...)
And do you know what else a cancer mom should NEVER have to do?
No matter what.
Did I mention 'ever?'
If you have never been a part of this life, then I'm sorry, but you DON'T know exactly what cancer parents go through and therefore you CANNOT judge our lives when you don't disagree with something we say, do, do not say, or do not do. (And if you're Christian, you shouldn't be anyway, but I digress...) Ask any one of my cancer parent friends and they will back me up 110% on this. A momentary glimpse into our nightmare is one thing, but you cannot imagine the pain, anguish, stress, and anxiety that goes into EVERY day and night. This is a long, hard, difficult journey that takes a toll on an entire family. And it will chew you up and spit you out if you let it... That said, I have heard some terrible things about myself for at least six weeks now. And I have hid them from everyone except my husband, because I was deeply embarrassed that someone could think them about me. Multiple sources have shared painful revelations that were spoken about me by people I trusted with my whole heart and soul. Here is my final word on my faults:
-I am sorry that I'm MONTHS behind on thank you notes. It's true. Months. I simply cannot keep up... I can barely find my desk and keep up with day-to-day tasks. I'm really sorry. You all DESERVE thank yous---ten times over!
-I'm sorry I didn't put the thank you in the paper following the benefit that was put on for Cole the end of November. We were rushing to cram in Cole's birthday, Nate's birthday, the benefit, the holidays, Christmas shopping, specialists, family time, lengthy inpatient stays, and then add in our day to day life as well. I am NOT now, nor have I EVER been, ungrateful. My heart broke into a thousand pieces when I heard that. I guess I thought I had been abundantly thankful, publicly and privately, for the love, kindness, and generosity shown to our family. Where would I be without all of you!? I guess if I knew that the lack of a big fancy article in the paper would make so many people genuinely hate me, I'd have had it printed on every page... I'm sorry for that.
-I'm sorry I haven't mentioned every gift given to Cole in this journal individually. You all certainly deserve a public thank you, but I have been incredibly overwhelmed by the pace and stress of our life. I'm sorry for that too.
-I'm sorry that I have calls & emails I've never returned. I literally have emails that are a month or 2 old waiting to be properly responded to. You all deserve better--- especially having reached out to me. Again, I'm sorry. I'm doing the best I can.
-And yes, I still have someones crock pot at my house, because I've been too busy to return it... I'm really sorry about that too. You were kind enough to bring me a meal, and I haven't even been able to drive your cookware back. Sorry. Please forgive me.
I guess the moral of the story is that I am not Super Woman, but I've been running around like mad trying to be for the last six months. It's taken it's toll on me. I can't do it anymore. What I need to be right now is a Mom. Only a mom. Just a mom. I'm sorry if I haven't done the things you'd have liked me to do--- or even that I probably should have done. And I'm sorry if you are angry with me because of that. I hope someday you will forgive me and consider the incredible pressure we are under every single day...
And lastly, no mother should ever, EVER, ever have to:
Beg God to spare her child.
Which is precisely what I've spent the last few hours doing. I don't know what is going on with Cole medically, and quite frankly, neither do the doctors. God knows---but he isn't telling. And so we've had a very long conversation tonight. I have to believe that tomorrow things are going to be better... He will provide. At the end of the day, everything we have in our lives is retractable---save for our faith. And so I'm trying my hardest to trust that God knows what he's doing. Truthfully? It's the most difficult thing I've ever asked myself to do...
I'm sorry for my ramble tonight, but I NEEDED to get this stuff off of my chest. It's 3 am. And I just purged six weeks worth of stress, anxiety, and bitter disappointment into this one update. Liberating? Yes. Do I hope you still love me? Yes! But if you don't? Well... I will have to be okay with that, because I simply don't have the energy NOT to be.