carefree

Today I mourn for the life I once had, carefree. I miss those carefree days. I took those day for granted. My life now is dictated to what I do each day. Every morning and and night I give Presley 1.5 steroid pills, Every Monday/Tuesday, morning and night I give antibiotics. Every Wednesday we spend many hours at clinic. I have strict instructions of what to do if she gets a 100.4 fever or 101  fever. At 101 we go to the ER at any given time, usually not during any convenient time. Not only that, the bills, the paperwork, the reminder calls, pre-procedure protocol instructions, calling clinic with concerns, keeping up on the prescription and the constipation, no swimming, no crowded places, dealing with "hazardous waste", cleaning the house, The list goes on. Going on a vacation like any normal family, that would be like winning the lottery. Life is just too complicated to just get on an airplane and fly away from all this. You would first have to have permission. That would be a hard disappointment if she didn't make counts and couldn't travel.  Not to mention just the thought of the magic 101 appeared on the thermometer you would be going to a totally random hospital hoping the care for you child is good enough. This is a heavy load for 3 years. Even going to church is not carefree. I once enjoyed the talks and singing. I'm now mentally counting the sneezes and trying to figure out where they come from so we can avoid "germs". One of the hardest things I endure daily is giving my child medications that make her so sick. Have you ever had to make your child do something that broke your heart? You know, made them cry? Not just once but about 10 times yesterday. It hurts you too right? I cry once I'm alone and just wish I could take this pain away from Presley but I can't. I don't know if I will ever be able to explain how hard it is to hand your innocent child chemo or steroids and say "swallow this". This is one of the hardest things I endure daily. I cry because it makes me feel like a horrible mother. I know these drugs take her leukemia away but the damage they do is hard to deny. I will always wear gold, pray and fight that one day we can find a cure for childhood cancer. A treatment plan that does not require such hard side effects and late effects. 7 kids a day lose this fight. Cancer is the #1 leading death in children. We need a cure. I don't just think of my child fighting this battle. My mind is consumed with how little Reiss buddy is doing and all the other children and parents who's life is crazy. The ups and downs are hard to take. One day your little girl is running around, singing and playing the next she lies on the floor to weak to play.
I cry and think of the life that was lost on March 12 for each one of us. The life that Presley lost of a carefree 3 year old. The big moments in Crew's life that are not celebrate because we have other things to worry about. My heart was so full and happy before Presley was diagnosed. We are happy now but it a different kind of happy. Happier on a complicated level. But I still cry when I think of those happy carefree days.
We love more, we understand more, we appreciate more, we judge less. The little things don't get to me anymore. I can remember a time I would get so worked up when Presley wouldn't take a nap. That nap now signifies that she is sick and tried. When she docent take a nap it means her energy level is normal and our sweet girl is feeling good. What mother do you know who jumps for joy when their 3 years doesn't take a nap? We take the time to love her more and soak it up when she is feeling good.
I know one day my life will become more carefree. I look forward to those days. I will appreciate those days more.

Cant you just see the happiness? These are the days I'm talking about. What did I have to worry about? Maybe that I didn't get a shower? or that Presley didn't have a bow? I would take those worries back in a heart beat!