Today I am sad, angry, tired, and exhausted. I shook and jolted in my bed last night, trying to settle down to sleep, not even knowing I was nervous for a silly old regular blood work day. It's nothing. Nothing new, nothing alarming, nothing scary. It's just routine blood work for my kid with cancer. Holy Frig, ya, with cancer. I say it like, my kid with brown hair, or my kid with freckles. It's all too common, and all too normal, and all too familiar, and all too horrible.
I didn't know that my mind and body were so affected, by going to the pediatiric oncology ward..and not for chemo..I mean. Hate that. Makes me feel like I'm losing control, and I need to be in control. I'm the mom of five kids who are depending on me to be well fed. Fed with good foods, fed emotionally, spiritually, fed educationally, fed in all that they are and have. I'm the one in charge most of the time! I need to keep my cool, not shake like a bloody leaf while semi conscious late at night. Wine, Melatonin, what will work tonight...
Today we had blood work. Luke's counts are 0.6, .1 above being neutropenic, not super...
I was informed via our parent oncology facebook group, that a girl, the same age as my Frannie, (about 12) passed away yesterday. We have seen them at CHEO over the last years and spent time with them at camp. She had overcome her first kind of cancer, was well for many years. The chemotherapies used to cure her, gave her a brain tumour. I wonder why we are as a family, placed in a group, a society of such ill children, who we grow to love, whose parents we care for, and pray for...what is this torture? Most families don't have friends who's kids die...on a sadly regular basis. Yes, I sound boo hoo and morbid, but it's true. We don't just go into that hospital, close our eyes to those suffering and also living around us, and hope and pray for our kid to make it..and forget the others...NOT at all. We pray daily, we see them, all the time. We share an extremely difficult and common bond, a bond of a child with cancer, a life threatening illness..one that has no straight course. A disease that can do almost any trick in the book..it can be gone, reappear, appear out of no where, it can be hiding, it can be in any and every part of the body, it can be cured, healed, re occur, it can cause every kind of damage and can sneak around and be beaten, only to have the chemotherapy used to beat it..come back and kill. It's never, ever, ever over. And it's never, ever, ever, done.
I am sounding pessimistic, and fatalistic, but I am being honest and real. We were not called to another country as missionaries, and followed that call. NO. We were not called to preach, to minister, to share, to speak. NO. We found ourselves, not called, but enveloped in sad and scary world of bald heads, barf bowls, IV lines, surgeries, disease, hope, and lost-ness. We found ourselves in a world of children, suffering, with cancer. We are here. We meet a lot of children over the three years of traveling to and from the hospital. A lot of these kids, they don't survive. A little piece of what was once me, before Luke's dx, dies too with each blow...
You maybe think..back off, don't be close to them, don't befriend them all, are you crazy, you can't care about all those sad sad cases..but guess what. We do. The instant we hear, meet, or know of a new case, and old case, and ongoing case, we care. It's in us to all care. We share hope, we share grief, we share food, money, fundraising, hats, gifts, cards, hospital rooms. We share the burden, as God intends us to.
The world is full of hurts and pains, and we are keenly aware of this every day. I have a lot of friends at this moment, who's children are in very difficult, and bad places in treatment. It's all consuming. It's terrifying. I love these children, I love the parents. Don't leave the side of the ones you care for, the ones you are related to, the ones who are true friends to you. Don't let them endure it alone. There is no telling when it's going to get all better, or go down hill. We just don't know.
I wish to God, that we never had to enter this sad world. I try to keep up my funny side, to make jokes, to tease, to go all blingy bling with my new S and Dot jewelery, to find happiness, and to be fun, but it's really hard. It's lonely, it's scary, and it's our path, a path I don't even want to know exists, let alone walk on, from here on in.
Let yourself enjoy the choices you have, the ones you can and have chosen, because often our mission field is thrust upon us. We are not trained, we are not prepared, we are not 'able', we are not strong. Our hearts beat and break daily, and we slowly shrink away into pain and despair. There is much much hope, and there is much too much suffering. Make the choices allowed to you count for greatness, and open your eyes to the pain so many face ...especially as I paint you the pictures of families, with kids with cancer. It's not gold ribbons and hats, it's fear and anxiety, and much loss. Much loss.
don't know what God wants us to pray for. But the Holy Spirit prays for
us with groanings that cannot be expressed in words." Romans 8:26--thank you Elise for reminding me of this!