I have been quiet the past few weeks. We are still finding our rhythm with the school year. I am actually enjoying the change in having Oliver attend afternoon preschool. We have been able to spend more quality time together (the past 2 years he napped in the afternoon, after morning school). We have visited playgrounds, ran errands and just hung around at home. I like having those special adventures with him.
On Tuesday we met with our medical equipment rep. Waverly has already outgrown her pretty pink wheelchair and we need something else to better fit her needs. She is getting heavy and my back simply cannot handle lifting her up into her chair. I wanted something that she can back into herself. I also wanted a lighter chair. (Her current chair is over 40 lbs!) Her trunk is weakening, so we need some additional lateral support to keep her centered. We also need a sturdier vest to keep her back in her seat, instead of hunching forward. I think we found a good option that meets all of our needs. The rep also brought a sample wheelchair that we just ordered for Oliver. It is a very simple pediatric wheelchair (more like a large stroller). Oliver climbed right up and waited for a ride. As I stood there looking at both kids in their respective wheelchairs it took everything in me to not burst into tears. I am just now sure how I am going to manage both of them as the disease progresses.
Also on Tuesday, Waverly's teacher sent home some questionnaires. They wanted to know Wavey's favorites for a class project. Two questions gave me pause: 1) Waverly's best friend is_______ and 2) When I grow up I want to be _______. My poor sweet girl doesn't have a best friend. There are no sleep overs, no birthday party invitations, no secret notes, no phone calls for her. I ended up putting the name "Jessie" as her best friend - she is a little girl who also has Sanfilippo and I like to think of the girls as kindred spirits. I had no idea how to answer the second question. ***Because I know Wavey's teachers read this, I was not upset by the questions. It was just difficult for me.***
I have written about the undercurrent of sadness. It feels like the current is growing stronger as the kids get older. Sadness seems to wash over me more often. And I have a more difficult time catching my breath. I think the new school year, impending birthdays and the developmental assessment from MN have all left me reeling. I can quite get my footing and the waves of sorrow are crashing on me.
I read a recent post from another mother of 2 children, both with Sanfilippo. Her eldest child passed away earlier this year. She remarked that she was going through some items and came upon a toy that her daughter used to love to play with. She looked back and wished she would have taken the time to play with her daughter more with that toy. I keep replaying that sentiment in my mind. Slow down. Take the time to enjoy Waverly & Oliver in the moment. I have already seen those moments pass. Waverly no longer wants to have tea parties or feed her baby doll. I wish I would have taken advantage of that time and made more memories with her. I see Oliver struggle with puzzle he so easily completed a few months ago. He no longer wants to hold a crayon and put it to paper. Why didn't I spend more time doing those activities with him. Why didn't I build more trains or towers with the Duplos?
I am struggling.