We have been incredibly blessed with Olivia, Jameson's daytime nurse, for the last 2 years. She is a great nurse, and she cares about Jameson as if he were her own. She also comes with an amazing gift in that her dad, Jeff, is a recreational therapist that works with developmentally disabled children and has decades of experience doing so. He came to our house a little over a year ago to meet Jameson, and was able to make all of these amazing adaptable toys for him that he has enjoyed very much. It can be hard to find the right toys for kiddos like J, because they just cant engage with them or have the physical ability to use them the way a typical child would. So having these gift from her father was such a blessing.
Over the last year, Jameson's abilities have unfortunately declined quite a bit. He has been having more difficulty engaging with his toys or seeming very interested in them at all. When we were at the hospital last week, I had a very emotional conversation with his palliative care doctor about my fears with him losing interest in the things that used to bring him a lot of joy. Watching videos of him from 1, 2, even 3 years ago and seeing that smiling boy that we haven't seen as much of lately was something I needed to talk about with his doctors and just emotionally come to terms with myself.
After we got home from the hospital, we got a visit from Jeff and had to explain to him as well about the changes Jameson had been going through and the sadness of not seeing him enjoy the toys that Jeff had spent all that time making for him a year ago. But instead of the sadness being echoed back to us, Jeff had nothing but optimism back for us. He sat and worked for hours with Jameson on new ways to make his toys work for him, and how to give him joy from each of them. Instead of having a toy sitting on a tray for Jameson to reach for, we bring the toy down to his hand level and let him enjoy it that way. Instead of expecting him to grab at something in the air, maybe we bring it down lower and let him move it around in a more comfortable way for him. Maybe instead of making him physically engage with a toy, we just put it on a table and let him enjoy watching it. It's all about adjusting your expectations on how things "should" be, and just letting him show us how it works best for him. It's amazing how you can still be learning that 6 years later.
So the point of this whole blog to say that changes are OK. Jameson is going to change, grow, morph, and sometimes regress throughout his entire life. That is fine. It's normal, or as normal as can be expected in this crazy journey we're on. The most important thing to remember is that you will get through it, and you will adapt. It's ok to be sad about things, but being sad doesn't help Jameson. If anything, it just keeps your mind from thinking of all the other things you do have and how you can make things work better for him. That is the important lesson for me to remember today, and always.
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