I have been having a very difficult few days. I have finally had time to process all that we learned while in MN and it has me down.
Waverly is doing well, but her walking has become very unsteady over the past week. She tends to stay in the living room now, instead of wandering about the apartment. She is crawling over to furniture in order to get additional support to move into standing. And she simply isn't able to walk as steadily as she used to. Thankfully, she doesn't seem to be in pain and we haven't had the crying that we had all spring. But she is definitely growing weaker. We actually met with her PT and the wheelchair rep today to discuss a new chair for her. Unfortunately, she has outgrown her pink chair and we need something that will offer better lateral support.
My sweet little Oliver is changing. I hate seeing it. He is struggling at the dinner table. I have noticed he is making more of a mess when he eats. He is ignoring his spoon and simply using his fingers (doesn't work too well with yogurt or applesauce). He seems more manic - unable to concentrate. He is also having more trouble sleeping and waking up super early each morning. I see so much of Waverly in him when she was his age. Just after diagnosis, in her last year of preschool. I think it was our most difficult year.
There is a constant under current of sadness. As the kids get older and the disease continues to progress, I thought it would get easier. I thought I would eventually settle into our reality. I have, however there are moments when it all seems too much. I am in the midst of one of the those moments. I hate seeing the effects of Sanfilippo in their lives. I hate that I am slowly watching all they have been capable of, fade away. I hate knowing all of the changes Oliver will go through the next few years. And I fear what the next few years hold for Waverly.
After a rough morning, I dropped Wavey off at school. Her PE teacher asked how I was doing. And I could see in his eyes that he could see the weight of Sanfilippo on me. I sighed and said okay, holding in the tears that wanted to pour out. He told me how wonderful it was to have Waverly in his class. He talked about her infectious laugh and how happy she makes people.
I love that in the midst of all of the changes her little body is going through, she can easily bring a smile to anyone who meets her. Waverly & Oliver are both such sweet little souls and I am so blessed to have them in my life. In that, I will rest.