Amid the pills, the treatments, the doctor visits, the mucomyst clouds that float around my home and penetrate the curtains, really, it is.
When I look at Olivia, I see her. I see a beautiful, humorous, loving, animated 4 year old little girl. I see my daughter, with her sparkling blue eyes and her flowing blonde hair. I see her smile, I listen to her laugh, I love to hear her sing. I see Olivia, I see my girl, I see my daughter.
It's easy to forget.
I know that she has a disease, I know that she has cystic fibrosis. You'd never know just by looking at her, neither would I. For all I do know about the disease, about the severity, progressiveness and graveness of it all, it's easy to forget those things and keep trekking on, letting the days turn to months and pass to years. And here I sit, over 4 years later with a bubbling little girl that has a deadly disease.
I sit here knowing the real stories of infants and children that have been taken by this disease. I sit here knowing that there are adults living with this disease into their 30's, 40's and beyond. I sit here knowing that we don't know what this disease is fully doing to Olivia. I sit here knowing that we won't know what Olivia's cystic fibrosis will look like for her. Will she live to be 30, 40 or beyond? Will her life be cut short, before she's a teenager? Will a cure come and make all these uncertainties go away?
I don't know.
What I do know is that right now Olivia is well. Aside from her weight, her pulmonary issues are minimal, at least that is how it seems. Again, the silent killer, she looks perfect on the outside but what havoc is being done on the inside, I shutter to think and dread finding out how her cf has progressed over the last year in a few weeks when we head back in for annual studies at our cf clinic visit.
The cf population is small, and yet, I find myself thinking, hoping, praying that against all odds Olivia isn't one who's life is cut short. I find myself coping by reiterating that she is doing well. I tell myself, yes, she is underweight but she hasn't had any lung issues. I find myself believing that she will live for a very long time, a long fulfilled life.
Perhaps this is how I cope, perhaps this is me having hope.
Perhaps this is the only way to make it through each and every day living with a disease that can quickly strike up and take her away from me.
Perhaps believing it won't happen to me, to us, believing that Olivia will be a "lucky" one to live to an old age is how we as humans deal with unimaginable situations.
Yes . . . it's easy to forget, until it's not.
Last night after Jeff and I had tucked the kids in and settled down to put our feet up and watch tv, Jeff flipped on an episode of Legendary Motorcar. We were watching and the main guy Pete, starts talking about a boy Sam who keeps popping up in the shop to check out the legendary cars. We later find out Sam is a 12 year old boy with cystic fibrosis. You'd never know, he looked like any other 12 year old boy, he wasn't "too skinny", in fact he had no outward signs at all. We then learn from Sam's mom that Sam's cf has progressed to the stage where he has now been listed for a double lung transplant.
He was living, breathing, riding in cool cars . . . he wasn't in a hospital, he wasn't having to breathe in supplemental oxygen, he looked like he was living like you, like me, like Olivia. It was later in the show when he was having an awesome fast car ride that he started laughing and had a minimal coughing attack. To others this wouldn't even have been a "sign" of cf.
My heart stopped for a moment: for one I was surprised to be watching another tv show where cystic fibrosis was actually mentioned, and for 2, this boy is a child, just 12 and is nearing the end of his journey.
Man . . . for as easy as it is to forget, to ignore the reality, it's just as easy to be reminded of it, to have it thrown back in your face, to have days where you want to do nothing but cry and sulk and scream at the unfairness of this wretched disease that is and will continue to do everything it can to take my daughter away from me, to still her life, to leave daddy without "daddy's little girl", to leave brother Landen without a sister and a best friend.
Some days are so hard, some days are so tough, some days are so unfair, some days the emotions of fear, grief, death are so strong it's hard for me to breathe.
Some days, it's not easy to forget, not at all.
Today Olivia is a bouncing, bubbling, blabbing, beautiful little girl. Today she is doing well. Today she isn't sick so it's a maintenance day. Today she is here, today she is with me, today was another day I was fortunate to wake up and have things be "normal" for us, today we were gifted another day.
What will tomorrow be like? What will next month be? What will our lives be like in 8 years, near Olivia's 12th birthday?
Today it's too hard to even think about or imagine. Today I'm reminded of how much we need a cure and how quickly it needs to happen. Today I am reminded that today is good, tomorrow may not be. Today is a hard day. Today, I only wish it was easy to forget. Today I wish I could push these awful heart-wrenching thoughts from my mind . . . for now, I'm going to try to forget, to enjoy today. Today I'm going to soak in the sounds of Olivia singing the music from Frozen so that I will never forget all there is to know of her.