Sometimes things come clearly to me, an epiphany of sorts. And today's epiphany - as I'm sitting here literally trying to figure out what is wrong with me - is that the stages of grief that they talk about are indeed real. And that it is okay to grieve in situations other than death, such as a medical diagnosis. A couple of weeks ago, someone casually said in a conversation that thank goodness it wasn't brain cancer (and she wasn't the first one). Yes, I'm thankful for that. Truly thankful. We lost an angel friend just a few months ago due to brain cancer and in the couple of years that we had the honor to love him here on earth, we saw what that fight is like. No child deserves such a diagnosis. And I hope we never hear those words.
But what should be understood is that it is okay to grieve over any diagnosis that means that life will change from what you have known, or what you anticipated for the future. Grieving isn't just reserved for certain diagnoses. Is my child dying? I certainly hope not (although it could happen at anytime whether it is Chiari-related (it does happen) or not...we're never promised tomorrow). Does my child have to learn a new norm, one that comes with lifelong pain and issues? Absolutely. And it is okay to grieve this. I know this because I've been here before. This isn't our first devastating diagnosis. But sometimes a reminder is needed.
Denial: I was in shock with the diagnosis. Scoliosis is what we thought we were dealing with, not her brain. I was numb. I did what I had to do to get through each day, and more importantly to get Kennedy through each day. Leading up to surgery. Surgery day. Recovery. There is a grace in this stage...nature's way of letting in only as much as our soul can handle. And as we start to let in more and more, we start to begin the healing process.
Anger: Once I knew that Kennedy was going to be okay, I was just pissed off. Once she was able to eat, able to communicate effectively again, able to go through a day without tears, I felt it was okay to just be mad. At everything and everyone. I mean, for the love of the universe, didn't she already have enough she was dealing with? Did she really need something else? I think I'm completely out of this stage now, but it took a lot out of me to be so angry. It was exhausting and I hated it. I hated to be hating. It is not me. Luckily, I was able to leave my anger in my happy place, to roll out with the tide, to be broken apart by the crashing waves. I hope my anger stays there, is broken apart enough that it doesn't come back to haunt me.
Bargaining: I am still in and out of this stage; the latest being due to the scare of possible meningitis due to the hole that appeared in her surgery site. To be honest, I've been bargaining since the pregnancy test said positive and I felt in my heart that something wasn't right. And I will bargain as many times as I need to in order for my girl to be okay, to have a good life. Whether it works or not - and obviously it isn't working great lately - it is in our nature to bargain with someone, or with God, or with the Universe, or with Pocahontas if the reason fits.
Depression: And this is where my epiphany started today. As yet another morning dawned when it was hard to wake up, hard to get out of bed. Another day when I decided I could not fathom showering, dressing, and going into the office where I had to see people. I've been so damn tired lately. And my body just hurts. And I have no energy. And I don't want to move. I was sincerely starting to think something was wrong with me. Then it hit me...I've reached the depression stage. I'm sad. I'm sad that Kennedy had to receive another diagnosis. I'm sad that Kennedy had to have brain surgery and the tough recovery this has been. I'm sad that she will have to suffer from this disease and its effects for the rest of her life. I'm sad that this disease is still so unknown. I am sad that this may or may not fix her breathing issues and we may need to jump right into another surgery. I am just sad. And living in a fog. I know that this kind of depression is not mental illness. I know that this kind of depression can't be rushed. I know that this kind of depression is not something that you can just snap out of. It is a necessary step to get where I need to be.
Acceptance: Obviously, this is what I'm working toward. Accepting is not saying that I'm okay with it. I never will be okay with it. It is knowing that this is what it is and we must go on the best we know how. It is learning to live with our new norm. It is learning to live with the new diagnosis without letting it control lives, without worrying about the what-ifs unless they happen. Our goal for the acceptance stage is to live again, not just to survive.
Although I've chosen to share my grieving process, Kennedy's grieving process remains private. A lot of it remains private from even myself, and that's okay. We all deal with grief differently. But the bottom line is that once we're ready, we will come to acceptance and move on. We will live again, not just survive. It's what we do, afterall.
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