putting up curtains in the bunker…


I have mentioned in the past how our family has been in survival mode for a while and how we fight to keep our heads above water at times. Right now, Timmy has 2-3 different types of therapy sessions every week, along with daily physical and occupational therapy exercises to do every day. We are failing at our attempts to get him shifted from using oxygen every night to using a CPAP instead, hopefully moving him closer to the day when he no longer needs breathing assistance at night. We are also struggling to teach him how to eat by mouth, running into roadblocks caused by his weak muscles and the ease of simply feeding him by his stomach tube instead. His daily medications are hit or miss and we find out that he needs to learn new ways to sit up, lay down or crawl. Abbie & Zach are back into school and both have projects, assignments, homework and things that need to be signed “right now.” Meanwhile, JT started preschool and we hardly noticed. My babies are growing up so fast and I am missing it. Then one of them brings home a biological present from school and the entire family begin to drop like flies, with one getting better as another gets sick. Vacation and sick time are dreams, being spent nursing sick kids or running them to whatever appointment(s) we have that week. It feels so overwhelming at times…and that is why we are in survival mode.

Like most parents who have been where we are can attest, survival mode can feel like you are in a bunker, holding up and surviving as life barrages you. You won’t give up and you pick off every challenge that comes your way. Yes, there are days that you hit the wall and find yourself weeping over the smallest thing, but you still keep going. You are a badass and there is NO way that this is going to stop you. But, this survival mode not only changes your daily operations, but the way you think as well. Yes, you become tougher and find out that you have so much more to you than you ever thought possible. But “hunkering down” for a long time can begin to change the way you see life itself, making you see it as something to survive, not enjoy or thrive in. I spend more of my energies simply trying to get my family to bedtime every evening, missing opportunities to make memories because “I am just trying to keep my head above water.” Weekends are spent at home “resting and recovering” but in reality you are bunkering down. You have stopped living because you are surviving. And at times, that’s what you have to do. When your child is in the NICU for months, your life virtually stops and you do whatever it takes to be with them. But that mindset can easily follow you home and take permanent residence in your heart and mind, like the crazy relative that comes to visit and never seems to leave.

I have always thought that survival mode was a time of hunkering down that would have a definite beginning and ending, both thrown on like a switch. When Timmy was born two months premature last January, it was an instant event that superseded everything else in our lives and marked a definitive start to survival mode. But I keep waiting for the time to come for us to switch it off and it just doesn’t seem to come. Every time Treshia & I begin to talk about “getting out of survival mode and starting to live life” again, something else happens and we run back into the bunker. I keep trying to switch it off but life keeps switching it back on again. I do not want to live like this forever, but it feels like we can’t leave. Is this what life is going to be like from now on? Should I start decorating the bunker?

But just recently I feel like I have begun to see things a little differently. Yes, I still feel like we are still in survival mode, but instead of seeing it as something that eventually end, I have begun to see it as our life. No, not some kind of depressing “Life sucks and then you die” type mentality, but seeing it as a new layer added to our lives. B6A4983EACA34D129A52EEEDB6603D4DLike an artist who paints with watercolors uses multiple layers of paint to create a masterpiece, I am seeing our lives as a work of art in process. When we got married, Treshia & I began to lay down the base layer, starting a new family with various priorities and passions. Then Abbie came along and we began to start working with colors, slowing changing our family artwork. Zach came along and brought a new pallet with him, adding new aspects. Then JT came in with his bright and loud tones, adding depth to our work. But instead of putting away the painting when Timmy surprised us in January, I now see that he is a new layer of paint that has not only added to the overall work of art, but has changed all of the other layers as well. Just like adding yellow paint to red paint creates a whole new color, our precious Timmy has changed all of us to our cores. We are not surviving, we are changing and becoming more beautiful. Yes, it is hard to change but it is not something I need to fear, fight or survive. And like the artist who steps back from his masterpiece to see how it is developing, I think I need to stop and step back too. I need to look at how we have changed, how we have grown and see the hand of the master artist in it all. I need to see the new colors, the new shades and the new depth of our family masterpiece. No, this isn’t going to way I had wanted it to go, but I am not the artist.

So, yes, I am going to begin to decorate. And I know what painting is going to go over the mantle…


~ by kuiperactive on October 1, 2015.

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