Thursday, June 9, 2011
It's amazing how much I want to be strong. I want to be able to gracefully get through this difficult journey -- to say that I have the utmost faith that everything will be okay... that my family and I can get through this... that Oliver will be healed. Most days I have the faith that everything will be okay and that one day we will know why this has happened. I know the things that I 'should' know, but I just can't wrap my heart around it. Today was not a good day.
I've been extremely stressed lately for many reasons. I've had a change in medication, have been having horrible headaches, stressing out over Ollie's benefit, fearing for what Oliver's MRI will show next Wednesday, saddened to hear of other children being diagnosed with cancer, with DIPG. It makes my heart ache... truly ache for these families because I know more than most what they are feeling. Granted... all of our journeys are different.
I've been learning how to create a slideshow on my own for Oliver's benefit and I've spent hours trying to fit things together while my 18 month old stands by my side whining to be picked up. He's a very clingy little stink right now! He usually sits on my lap while I try to figure it out. He loves looking at photos and watching home videos on the computer. However, today as I was working on it, I just burst out in tears... bawling. So many thoughts raced through my mind. Why was I making this video? How can I capture Oliver's personality and let people that come to his benefit truly see who his is? Will people ever know what a sweet boy he was and how funny he was if he loses this battle?
We are trying to make a wish come true for him. Things have changed a lot in the last 18 months and I want to do what I can to make him happy. I'm making a slideshow for my son that has a brain tumor that could kill him and statistics have shown that it most likely will. I'm making this slideshow to show at a benefit so that we can take a trip that may be his last big trip. This is not right. This should not be happening to us. I just can't do anything but cry and now I have a huge headache. GAH!!! I feel bad because people ask what they can do, and sometimes I don't know. I can't transfer my grief to someone else to take for a bit. I feel numb today. I know that I shouldn't have these thoughts, but again... I can't help it. They weasel their way into my head and wreak havoc on my mind. Some days I don't know how much more I can take. Everyone says that they don't know how I do it... that I'm stronger than I realize... if they only could see how I weep when I'm home in my room. If they only knew that I struggle so much with the will to live... struggling with wanting to end it all and be free from the emotions and pain of this life. I always thought that my mental illness was my biggest trial to manage in this life. That coupled with the reality of possibly losing a child is nearly unbearable. I really don't know how much more I can take. Day to day... hour to hour... minute to minute. I mean... really... minute to minute. At times I'm bawling and nearing the edge of all sanity and then 20 minutes later, I can deal with it. Sometimes I just return to the former numbed feeling and feel like I'm zoned out.
I'm hoping that I can get my medication figured out and these episodes will be fewer and further between. Most of the time I am sane and have fun with the kids. Other times... not so much. I've been lucky enough to meet a great counselor that I've been seeing since about a month after Oliver was diagnosed. I've also started going to group therapy for my mental illness and learning ways to try and manage the disease. It is a lot of work and thank God for medication. I am blessed to have found a counselor that I click with and that understands my illness and helps me probably more than she realizes. Climbing back out of the hole I've been in for the last day or two... waiting for this headache to go away. Going to bed and hoping for a better day tomorrow. I want to be well for Ollie's benefit on Saturday. I want to just BE WELL.
Showing posts with label strength. Show all posts
Showing posts with label strength. Show all posts
Thursday, June 9, 2011
Tuesday, June 7, 2011
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.
"... 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.
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