The busier life has gotten, the less time I’ve had more myself this past year. Between work, the kids and the house…well…this blog just didn’t get any love. And I miss it.
I’ve learned some hard and some beautiful lessons this year. I’ve come to newer and deeper understandings about Nathan, views I’d love to share for those that have walked this journey with us. So here I am again. Happy to reconnect to this little piece of myself, and to you.
Life has been a struggle ever since my grandma died. She took a part of me with her. I always knew my grandma was special to me, and tried to spend as much time with her as possible. But I didn’t realize how deeply ingrained she was to my foundation.
Losing her has made me value Nathan’s life that much more. I felt that at times I took grandma for granted – she was always there, and even though she was almost 90 years old she felt so strong, vital, full of life. I felt that she’d be around forever.
I know Nathan is fragile, but part of me wants to believe he’ll be with us forever too. Another part fears his fragility, and I still wake up at nights to check his breathing. So how to balance these two feelings?
All of us have fragile lives – I’m well aware how quickly reality changes, and that any of us can die at any moment. But with Nathan this fragility is more obvious.
I used to spend a lot of time wanting Nathan to “maximize his potential” and to become as typical as possible. I really wanted him to walk and do the things typical children do. Now, with this new awareness of the fragility of life, I spend more time wanting to enjoy Nathan and for Nathan to enjoy the life he has.
There are millions, billions of typical children out there, walking, talking, taking care of themselves. And there are so few children with Nathan’s strength, patience, gratitude, spirit. You can’t help but feel happy and loved when you’re with Nathan. He has this deep contentment, even though he’s the most helpless of beings. I’m not really sure how or why, but he is the happiest person I know. Deeply loving, deeply kind, deeply grateful and patient.
Lately with how hard I’ve been working, I don’t get to see him too often. I keep reminding myself that it’s not worth it, that none of it is worth it if I miss out on their lives. But that balance is so hard to maintain. Providing vs enjoying quality time is difficult.
I know this has been all over the place, but I have months of words jumbled inside me trying to get out. Hopefully this is the start of something, and I can slowly get all these words and feelings out. And maybe I can help others while I sort out my own heart.
I hope you’ll hang around.