Notes Left Behind

I just read a book, Notes Left Behind, written by a parent whose sweet daughter, Elena, passed away from the same brain tumor that Oliver has and I was amazed and saddened to see how many similar thoughts I've had throughout Oliver's journey. I wanted to share some of the excerpts that touched me.



"... I don't think that every moment demands a lesson. All I know is that these memories need to last. Whether we go to the Eiffel Tower or to the grocery store, they both can be treasured moments if we make the most of them."

"It's funny how you never know how much you can handle until it gets worse. And just when you get used to that, it happens again. But somehow, even with this experience you find a way to make it work because that is how you cope. Not because you deserve it or because you need the experience to set priorities, but because it's the human thing and it is life. And through this experience we will grow, find out what the holiday means and learn to expect more of each other. Together we will use this struggle to make us stronger as a family and support each other when we break down. That is what a family does and how we cope."

"The isolation and fear, however, are always present."

"Our Christmas gift was Elena [Oliver] this year."

"Congratulations! You have cancer. I look around and see the signs of friends and family trying to cope with the news. The child who was healthy yesterday is terminal today. And we do the best we can to help. Sadly there are few options and very little we actually can do. In Elena's [Oliver's] case there may be none. So we give her toys, buy her clothes and spoil her."

At St. Jude... "It seems that in our group there are two types of families. First there are those facing months, if not years, of additional chemotherapy and surgeries. These families have two weeks to one month off to go home, but then they will return for another dose of severe chemotherapy and weeks in the hospital. And while they have the most difficult path ahead, their prognoses are relatively positive. Then there are those who are here for radiation only or combined radiation and chemotherapy treatments. They're going home for good, with the exception of an occasional checkup visit once a month. In some of these cases, the prognosis is still almost 85 percent survival. I envy both. We too will go home after our six weeks and return for only monthly checkups. And while I certainly love being able to take my daughter back home, I'd spend weeks, months and even years if it meant that the survival prognosis would be better than 10 percent. In a way, we are our own class."

"I looked at the snow skis and realized that Elena had never been snow skiing, let aloe even experienced snow deeper than six inches. I realize that this time is lost. All the things I planned to do with her are now fading and I may never have that second chance."

"You can diagnose the disease, but God keeps the time frame secret. I guess it's best this way to keep living and to see importance in every action. I see it now but only hope that the lesson will soon be over and she will be cured. Until then, every weekend, afternoon and morning will be different."

"When it ended and it was time to go, I picked her up, laid her head upon my shoulder and continued to the ferry that would take us home--never mind that my arms had fallen asleep thirty minutes ago. And when we returned, my arms ached, but so did my heart. For despair forces you to live in the present while your mind races to the future."

"Friends don't have to be the same in order to get along. Sometimes it is the differences that make a friendship work."

"We need more time. The chance for miracles is today and the cure starts now. Tomorrow may be too late."

"... with the possibility of this being Elena's last vacation, I'm so apprehensive that I don't want it to begin... There we realized that it's impossible to stop time regardless of how much you love your children. You take pictures, dry the tears, relive the moments and hope that you never forget. But at the end of the day, you look forward, stop thinking and keep moving, for that is the only way to survive. This is ultimately what it's about when you deal with a terminal illness; you deal in the present and you never stop for fear that you will never get back up. And then tomorrow, you begin all over again. It's a type of exhaustion that you can't rest from and a feeling you will never forget."



There was so much more that I felt was lifted straight from my life, although we are experiencing it presently. I am grateful for all of the parents that have documented their journeys with this disease. I'm grateful for their honesty and I've gained so much strength and peace from their stories.

Dark and lonely

This is a dark and lonely place to be. This is not going to be a cheery post. So... if that bothers you. Stop reading.

THIS is my life. This roller coaster of emotions that comes with having a terminally ill child trying to stay upbeat for the sake of my child, my family and for everyone else around me is exhausting. IF... someone asks me how I am I usually answer 'fine' as to not have to burden them with any depressing issues and appease their conscience to ask how I am in passing as if it's a duty, a small duty to ask and then be off the hook. As you can tell this journey is making me more bitter toward people. People can talk the talk, but RARELY do they walk the walk. This is mainly coming from the fact that I have seen more kindness and love in absolute strangers than I have in friends and aquaintances. Now... you think... oh no... that's going to piss someone off, but in actuality, I don't think I could be ignored and forgotten about more than I feel at present. I'm just being honest with what I feel and what I've seen. I am utterly grateful for the kindness of the few friends that I have and the kindness that strangers have shown to Oliver and our family. This post is in regards to the feeling that nags on a daily basis of why I feel so alone.

I admit I have withdrawn from others because you don't want to be a burden in everyone else's happy day. I don't want to suddenly go off on someone that is going on about how rough their day has been when I'm struggling with the fact that my kid is dying. I don't want to be around people that are talking about death and dying not realizing what it is causing me to feel always having that on my mind. Also, I don't want to talk with people that really don't care. I'm not going to confide in someone who wants to look like they are there for me around other people and then are no where in sight when I need them. I'm always wondering what people will think of me and scared that people will think less of me if I honestly share this side of this journey... the dark and lonely side that accompanies what we are going through. I don't want to be the weak one that has lost their positive outlook and hope but it is what it is. I guess the time has come where I just don't care. This is MY journal. People will think what they want to think and judge me based on what they THINK they know. This is for me and hopefully to help others that are going through something similar to know they they aren't alone in feeling lonely and forgotten about. For me, it's even more difficult with the dreaded mental illness to go with it, feeling emotions 100 times stronger than 'normal'. That's another post for another day.

I'm so sick of giving people the benefit of the doubt... "They just don't know what to say", "people don't know how to handle grief". Well... guess what... if my grief is difficult for you... guess how I freakin' feel when you don't even acknowledge my existence anymore!!!!! *insert frustrated scream* I'm to the breaking point. No one wants to talk about it, like it's not happening. If I don't look, maybe it will just go away. Serving others and loving others is drilled into our fibers every Sunday at church. Hmmmm... maybe I'm not the right type of person to deserve that love from my fellow church going crowd. I'm not a squeaky enough wheel? I'm not in a certain cliche? Who knows... I've been struggling with people. I've been struggling with God. I've been struggling... period. I just don't get this life. 'The gospel is perfect... the people aren't". If I hear that quote one more time I might just vomit a little. So... that is the answer for everything. I don't know. I want to believe in 'the plan'. I want to believe in the good of humanity. I REALLY WANT TO. I hate feeling this way. I hate being so lonely and feel like people just don't care. I'm usually a more outgoing person, but this is making me more of a hermit. Not wanting to put myself out there to be hurt, because I am hurting so much right now.

Life changed the day Ollie was diagnosed. I've been grieving ever since. I've been dealing with the thoughts of wanting to get in a car accident and other harmful things because if he dies... I don't want to live. I don't want to live with the pain of not having him hear. It's already almost too much to bear having the knowledge of his diagnosis and if it were to ever come to fruition I honestly don't know how I can live every day. This is my reality. I KNOW that I have a husband and other children to live for. But... that's really about it. I'm not the same person I was before he was diagnosed. I hope that someday I can get some of me back, but I will NEVER, EVER be the same. This year has taught me a lot. It has opened my eyes to how people are. The good and the bad. I honestly feel some days that people act like he's already dead. Out of sight, out of mind?! Who knows... but, that's how I feel. If he does pass I really don't care to see people at his funeral acting like they care when they weren't around during THIS difficult time. It makes me angry and so hurt. I just shake my head. You try to be a good friend when you can and then expect the same in return when life gets hard for you and when things aren't reciprocated... well... it hurts, it makes you angry, it's confusing. This is where I am right now. Not a happy place to be. I am learning to be an island. Well... an island with my husband and little children islands... although sometimes I need more. But... sometimes you can't get what you want no matter how much you want it.