I was right, but not about the dying part. I will never be the same. The life I knew is over and we've started new. Was it by choice?
Yes and no.
I choose the way I endure hardship and adversity. I can choose to focus on all that's wrong, on what I don't have, how other people behave and create whatever drama or scenario that best suits any imperfection that is present. I've already lived that life. I've lived with negative people and those who do their best to bring me down. I can't survive in that atmosphere. I learned that at a very young age.
I don't want my legacy to my children and their children to be one of loneliness and heartache. We all deserve much better than that. I sure don't want to dwell on the "what if's" that may never come to be. I heard once that worrying about things that could happen, is the same as praying for things you don't want. Once I put it into that context, I knew I had to stop worrying about what if....and start praying for the idea that Scott would be spared this trial at this time and live up to his potential. I began praying also that I would be able to live up to my potential too.
Life is an entire collection of experiences both good and bad. We make choices moment to moment, about what we think, how we respond to, and how we feel about each experience. Happiness is a choice. Was I happy about the diagnosis. NO! Would I be happy to live this life without the father of my children, not at all. But I have found happiness in moments along the way despite the sadness of the diagnosis and the situation it created.
A lot of little things, add up to something big eventually. Did any one little thing make all the difference for us? No. But a thousand little things along the way did. Let me explain.
It was a little thing, but Scott was home the night of his first seizure. It seems like it wouldn't matter too much until you realize that he could have been driving across the state. He could have been a hundred feet up on a radio tower somewhere. He could have been hiking into a remote mountain site, alone in the middle of winter. He could have been alone in a hotel room with no one to help him.
While at the hospital the first time, we were surrounded by friends and family who came to help. I think that was a big thing personally. We also had people bring meals to the house and offer to help with kids and the dog.
We had an envelope of money donated by the great people that Scott works with. There was a little under $600 in there. It was a great eye opener as to how much people care. So many messages, texts and emails have come our way with expressions of love, hope and support. To say, "You're in our prayers" seems like a little thing, but when you hear it or see it hundreds of times, it turns into a huge amount of comfort.
Our children have been troopers through this whole thing so far. When stress and uncertainty could have ripped our family apart, our children stepped up and showed us how to be brave in the face of fear. They helped out with little things around the house. They took a little more care of themselves and didn't complain about it. Our children, in some ways had to grow up a bit before their time. And they did it without feeling sorry for themselves. They didn't ever make me feel that I wasn't doing a good job for them either. They were really supportive of anything that Scott needed. I am amazed at the wonderful human beings they truly are.
The little bits of hope we found along the way came in the form of Scott not having any symptoms except the two seizures he initially had on Feb. 10. There were no others. We kept thinking that there had to be something different going on for him because he was not deteriorating and not having any neurological problems at all.
When we talked to the doctor just before we left for vacation, he told us that it was good sign there were no other symptoms and reassured us that there was nothing Scott did or didn't do to make this happen. He also gave us reassurance that he was there for us and if there was anything to be done, he would certainly do it.
Little rays of sunshine came in the form of cards and letters that poured in from friends and family. We also gathered little moments to steal away and spend time together, just the two of us talking and getting to know more about each others hopes and fears. Scott spent a little more time with each child, talking, laughing, playing and giving them whatever bits of hope he could offer them at the time.
A lot of little things, add up to something big eventually. Did any one little thing make all the difference for us? No. But a thousand little things along the way did. Let me explain.
It was a little thing, but Scott was home the night of his first seizure. It seems like it wouldn't matter too much until you realize that he could have been driving across the state. He could have been a hundred feet up on a radio tower somewhere. He could have been hiking into a remote mountain site, alone in the middle of winter. He could have been alone in a hotel room with no one to help him.
While at the hospital the first time, we were surrounded by friends and family who came to help. I think that was a big thing personally. We also had people bring meals to the house and offer to help with kids and the dog.
We had an envelope of money donated by the great people that Scott works with. There was a little under $600 in there. It was a great eye opener as to how much people care. So many messages, texts and emails have come our way with expressions of love, hope and support. To say, "You're in our prayers" seems like a little thing, but when you hear it or see it hundreds of times, it turns into a huge amount of comfort.
Our children have been troopers through this whole thing so far. When stress and uncertainty could have ripped our family apart, our children stepped up and showed us how to be brave in the face of fear. They helped out with little things around the house. They took a little more care of themselves and didn't complain about it. Our children, in some ways had to grow up a bit before their time. And they did it without feeling sorry for themselves. They didn't ever make me feel that I wasn't doing a good job for them either. They were really supportive of anything that Scott needed. I am amazed at the wonderful human beings they truly are.
The little bits of hope we found along the way came in the form of Scott not having any symptoms except the two seizures he initially had on Feb. 10. There were no others. We kept thinking that there had to be something different going on for him because he was not deteriorating and not having any neurological problems at all.
When we talked to the doctor just before we left for vacation, he told us that it was good sign there were no other symptoms and reassured us that there was nothing Scott did or didn't do to make this happen. He also gave us reassurance that he was there for us and if there was anything to be done, he would certainly do it.
Little rays of sunshine came in the form of cards and letters that poured in from friends and family. We also gathered little moments to steal away and spend time together, just the two of us talking and getting to know more about each others hopes and fears. Scott spent a little more time with each child, talking, laughing, playing and giving them whatever bits of hope he could offer them at the time.
People from my business sent their support and helped out where and when they could. I even had clients who have many of their own struggles tell me not to worry about their families and focus on mine. The outpouring of love and support has been amazing. The really cool thing about it, is that it has largely come from people outside of our immediate family. It's the messages from total strangers that restored my faith in the world and let me know that good people exist all over.
Our neighbors and schools have been so helpful and understanding. The list of little things just goes on and on. I've often asked myself what we would have done had we been so alone in this trial. Then I remind myself that's a "what if " and I don't need to worry about that because it's not the way it is.
Conversations can seem like little things. They can also be so empowering and life changing. I am so grateful for the hundreds of conversations that over the course of this time, has helped me put so many things into perspective. I carried around a lot of guilt and unhappiness for decisions that I had no control over for most of my life. Feelings of inadequacy that shaped my existence has virtually disappeared.
We still have a long road ahead. Many more answers to find. There is still a tumor and the question of how our lives will be shaped by this fact. Will things change for us? Yes. Things change for everyone. Being able to recognize change for what it is and adapt is one of life's greatest blessings and challenges.
Keeping my eye on the little things, the sunshine, a hug from a little person, a note sealed with a kiss, a really great comedy, music....all these things bring happiness and tiny bits of hope moment to moment. One of the biggest lessons I had to learn came to me while comforting my 8 year old.
She was beside herself with fear and worried that she was going to lose her daddy. Crying herself to sleep was breaking my heart, because I knew her pain intimately and wanted desperately to take it from her. I went to her beside and knelt down along side her. With tears in her eyes, she said, "mom I don't know to stop being so scared. I can't stop crying." I sat there and held her close. Stroking her hair and hoping I could say something inspired but I just didn't know what.
After several minutes and silent prayers for help, I said confidently, "how is your dad today? He is good right? He is here. He is not sick, not gone." She looked at me with agreement in her sweet little face.
"Let's just think about today and not the rest. Let's just look at where we are right now, altogether and happy. Let's think about this moment right here and everything is okay, right now and that is all we need to think."
We hugged, wiped away the tears and breathed in a new sense of relief for not having to take on the whole of everything. We had each other, we still had our family. Everything was okay right then and that was enough. It was a little thing. But that along with the hundreds of others gave us the hope that things would continue to be alright.
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