The Hardest Thing We've Ever Done So Far

We first decided to not tell our children until we knew exactly what we were dealing with for sure. How could we tell them this? How would we do it? Could we even get the words out? What if we couldn't handle the hurt of having to tell our children that one of their parents might not get to see them grow up and make it worse? Theses thoughts  pierced my soul and left a deep, throbbing, relentless sadness that felt like a gaping pit in my stomach for which there was no fix.

Several of our friends inquired how the appointment went and wanted to know what the surgeon had to say. When I was able to muster the courage to actually talk to anyone besides Scott, I wasn't very happy with the response I was greeted with. "When are you telling the kids?"

"We aren't telling them yet."  Why not? I wanted to scream, WHAT DO YOU MEAN WHY NOT??? Because I am a coward and I don't know how to tell them that their Dad just got the most devastating news of his life and we can't deal with it. How are they supposed to?

I was bitterly angry. I could have justified my feelings if it had only been one person reacting this way. But 2 people, of whom I have the utmost respect and love for, both said the same thing to me. They both said very lovingly and kindly, although it felt like utter betrayal at the time,  "You have to tell them now. They will resent not knowing."

Then came the words I will never forget. "Tammy, we all try to live in a world of illusions that we create for ourselves." We try and do what we can to convince ourselves we have control over things that we actually don't. Our kids already had the sense something is wrong. They will need this time to grieve.  My friend told me that my children would surprise me and rise up to help me, when no one else can. They are much stronger than any of us give them credit for. We had a choice, we could  look at this as a time to bond, to heal, to cry together and be there for one another in the realness of what life is throwing our way, or we could continue to pretend that it's something different than what it is. 

I knew what my dear friend was telling me was right. I knew we had to stop pretending we could somehow shield our family from this anguish. I discovered in that moment something I had never before acknowledged.  I am very good at living in my illusions. I justify whatever I need to, in order to get through the day and still be able to live with myself. I was okay with pretending that we were not going through the most difficult time of our lives. But I couldn't live with the thought of my children resenting me for not letting them know the truth.

The reality for me and real reason I didn't want to tell my children the news was that I just didn't want to deal with how it would make me feel as a mother. And I suspect the same is true for Scott as the father and protector of his family. The knowledge that our children would have to endure such a harsh reality that neither of us could protect them from, was worse than the thought of him actually dying. Scott told me the day we heard the news, that he is not sad or scared for himself. With tears streaming down his face he cried, "I'm scared for you all. I am so sad for all that you and the kids will go through without me there to help you."

I knew in my heart of hearts that we had to find a way to make peace with this huge unknown, and tell our kids in a way that would show them courage, and strength, but also vulnerability. We had to let them know we didn't have any answers, we couldn't make this okay, and that they are entitled to feel however they feel without having to make any excuses or justifications.

We couldn't come to all of this in a day. We had to take some time to allow ourselves to feel what we felt. We had to give each other permission to say all the things we thought we needed to say, like "this isn't fair" "I'm not ready to say good-bye" "I don't want to do any of this without you" and "I will always love you." We also had to give each other permission to grieve this loss openly. Because the truth is, whether we have 2 months or 40 more years together, our lives will never, ever be the same.

We are grieving the loss of the life we thought we were going to have. Whether this will be a learning and growing experience will not be determined by the outcome of this situation, but instead by how we each chose to deal with what is to come.

I hope when our children look back on that day, they will understand how difficult it was for us to do. I hope they will find some appreciation for the way we chose to tell them. I cherish the advice of my loving friends who encouraged us to live in the moment no matter how painful, and not to pretend that this isn't what it is. Because what happened when we gave in to the idea that we needed to be real, was Scott and I experienced a huge sense of relief. That was very unexpected. I didn't think I was going to feel comforted by my children, I didn't know that I would get a sense that no matter what actually happens, we will be there for and with each other. The hardest thing we have ever had to do so far, brought us a huge sense of hope.

Scott is the bravest man I have ever known. He is facing this head on, with the same fierce determination that made me fall in love with him in the first place. He says he isn't ready for his life to be over. He isn't giving up or giving in. He is not dying. He is living. He is also allowing the rest of us to walk with him, and be real. He doesn't tell me to stop crying when I am sad and overwhelmed with the thoughts that are constantly with me. He just holds me and says that he knows, and he's so sorry. He does that with the kids too. His quiet determination, and his undying love for all of us, is what keeps me going from day to day.

We asked the question whether it is better to know that death is a real possibility and have time to say and do what you need to say and do before it happens, or if it's better to just have to deal with it after the fact. We have concluded that it is both a blessing and curse to be told your time is limited. On one hand you now have an opportunity to make the best of it and not leave anything undone. On the other hand, you know it's coming and live with dread in some form or fashion that was not present in your mind before.

There is now a very keen awareness for me,  that death is just part of life. A very real, very natural part of this existence for everyone of us is that we will all pass away. You would think I would have come to understand this by now. I have lost loved ones. I have felt the sting of this before. But somehow, this seems different. To think about life without my love, to wonder how my children will ever truly understand his love for them and not having him there to experience their lives with them is just something I don't want to have to do. This is what leaves me hunting for hope. Hope that our children will appreciate the father they have. Hope that somehow, someway we will be okay no matter what happens. We have been placed on a journey that none of us expected. But yet, here we are.