As a busy momma to these two boys, I cherish my "alone time" when I finally get to shower! However, as much as I look forward to a hot, relaxing shower, a small part of me wants to avoid it. In the shower is usually when I stop "holding it in" and let the tears run free from my eyes. I try to distract myself with the radio. When that doesn't work, I make up alternate personas for myself and mentally live them out. I've been an Olympian, a songwriter, a model, a coach, and a multitude of other things, none of which are remotely close to my life. I am not wishing for another life, I don't want to trade the people I have, and I am not interested in becoming someone I'm not. It's more like when you're reading a good book and slip into the role of one of the characters, except this isn't a book.
I let the tears out. Sometimes I cry through the whole shower and let the tears mix with the water and wash down the drain, never to be seen again (well, until my next batch of tears is ready to show up). Sometimes I'm too mentally exhausted to let it happen so I get lost in the radio or in my ridiculous imagination for a few minutes. It may be a silly coping mechanism, but it's mine and works for me.
Why am I telling you this? Not so you'll feel sorry for me. I really don't want that. It's just to let you know that I have my moments. I let it out. It often happens in the shower. I guess it's because there's no covering anything in there and it's easy to bare the soul as well. I don't know why exactly, but that's my "weak spot."
Through the past two plus years, I've lost count how many comments I've heard or read regarding how we hold it together. "How do you do it?" "I don't know how you do it." "I couldn't do it." "You're so strong."
I think we do a pretty good job. Most of the reason is because of the boys themselves. Eli is too young to understand something is "wrong" with him. It's all Zachary knows because Eli's the only baby he has around. In the past, when Zachary would see a picture of a baby without a shirt, he was confused because that baby didn't have scars on his/her chest or two buttons (one belly button and one MicKey feeding button). His baby did so he thought they all did! This is the norm for the boys, their comfort level, their needs and therefore our life. We don't know any different.
I know people mean it as a compliment when they ask the above questions or make the comments. I understand that and appreciate it. But you must know, I don't hold it together all the time. In my head, I feel like I have to make an effort to talk about something other than Eli's health, upcoming surgery, or its impact on our future. I feel like I'm just the same as most other parents because they would do anything for their children. The difference is that Bryan and I are called to do some very different things for Eli than other parents have to for their children. Those things have incorporated themselves into our lifestyle, become part of our routine and we can't imagine a day when we don't do those things.
That doesn't mean I'm happy about it. However, an altered lifestyle to fit around Eli's needs and Zachary's needs as a sibling to Eli, means that Eli is still here. The fight to keep him here will be met with fierce competition on our part. But that daily fight does take its toll.
I'd be lying if I said I always held it together. I don't. Most of the time I can, and without much effort. But sometimes I can't. Random tears will creep up on me when I'm doing some of the most mundane tasks like folding laundry, doing dishes, peeling vegetables, or rocking Eli to sleep for his nap. I'll hear a song on the radio or read a touching poem and think "that would be nice at his funeral." We have had to prepare ourselves for the possibility that he may not be with us long and that's crept into many facets of our lives. Don't take that to mean that I sit around thinking morbid thoughts. Believe it or not, to find something pleasing enough to consider it a part of a loved one's funeral is a comfort. A way to pay respect and tribute to the way the person touched your life.
In no way am I ready to let go of Eli. I do not think he will pass away because of this surgery. He has too much trouble left to cause! I read a book called Heart Warriors: A Family Faces Congenital Heart Disease by Amanda Rose Adams. Her son is also a CHD warrior whose defects are similar to Eli's. Many things about that book touched me but one phrase in particular has stuck with me: