Deep Breath
August to September to 2019 to May. It was a deep breath between blog posts.
These have been busy days. Busy with work. Busy with children. Busy with appointments, the fun and the necessary. Sometimes those two overlap, but rarely when it's an appointment for Anni.
Oh God, on some of these days between when summer ended and spring began I needed my own words of
where hope has felt further away than maybe ever in my life.
It's happening. This changing. I guess we always kind of hoped that Anni would be an exception. That she'd be the one to have some birthdays in her twenties. That I would hear "Mom" when she was a teenager. That she would miraculously be immune the seizures and tremors and rocking and shaking and stumbling and...
It's too much sometimes. It's too much frequently. The small changes come and I've forgotten when she stopped talking. It feels like it's been years since we started blending all her food into a paste, but it was less than a year ago that the wiring shorted out between her brain and her mouth and she suddenly forgot how to chew.
I'm asked, "How are you doing?" and I usually say, "We're fine." And it's true. I'm fine. And also awful. It's a weird thing, this grief. It's rarely ever one or the other.
One of my favorite and most difficult times of the day is putting Anni to bed. I put a clean mattress protector on her bed, tucking the sheet in around it, plumping her pillows and blanket. She leans against her bed, not steady enough on her feet to lift one foot and then the other to step into her diaper. Pajamas on and teeth brushed, I help her climb into bed.
Regardless of the night, no matter what kind of day it's been, if I lay in there with her long enough, I always end up in tears. The feelings bubble right up and I know I'm crying for me and for her. I'm crying because I'm so profoundly grateful for those moments and so deeply grieved that I won't have the honor of doing this much longer.
She is changing. She is becoming a tween before my eyes. The thinning out, the face changes, her little girl smell is going away. I am keenly aware of what is going on with her body--I've paid closer attention to hers than my own. She's slowing down more and more and she seems...tired.
Last month we learned about feeding tubes. I guess I've been educating myself for the last year, not really sure when the right time would be to talk about it with each other and with her doctors. But it's here. There are a litany of reasons why it's going to be a good choice for her, but that doesn't mean it was easy to get there mentally or emotionally.
I know she's not ever going to improve. She's never going to hit those educational goals, reading, writing, 'rithmetic, let alone walking or talking or eating. It's not fair to her to hold out on something helpful just because I'm afraid.
When Anni was 3, she adored going to preschool. She loved her teachers, she loved her friends, and she loved the bus. When I would pick her up, she would look over her shoulder to see her friends filing on to the bus and she would cry, telling me she wanted to ride. I was so scared to even think of letting her on. What if she got lost? What if someone took her off? What if, what if, what if?? One day I had a major realization: I was letting my fear keep her from enjoying a completely safe and fun experience. My fear was robbing her of joy. It was robbing me of joy. So she rode. It's been a couple of years since she boarded the bus, but I still wave to her longtime driver when we pass on our morning routes to school.
It was on that day that something clicked that I decided that fear was a poor excuse not to do something. Fear is a powerful motivator to stay where it's safe, where it's easy, where it's comfortable. But it's a terrible reason to avoid
living.
So, June 11, she'll be going into surgery. She'll get a hole in her stomach and new set of feeding protocols. She'll still eat by mouth while it's still safe, and I hope it's a long time because she really loves to eat, slurping that pureed chicken and peas and potatoes, swinging her sippy cup wildly as the one feeding her ducks and dodges and inevitably retrieves the thrown cup.
I'm scared. But I won't let that fear keep us from pushing forward to give her a wonderful quality of life, even when that choice seems like a step backwards. That's what MPS is really, a series of backwards milestones. I'll walk those milestones with her with confidence, because they say that hindsight is 20/20 and I'm clear about what I want her life to look like.