I feel like I have been a little absent from here recently. It seems like this cold weather won’t give up and while we have been noticing and enjoying the longer days, the cold makes it a little brutal for Cade to try to help with anything outside.
Maybe that is why it seems like we have been living absent DMD recently. When it is too cold to come home and do anything else, you come home and do what normal almost 11 year old boys do. The iPod games are getting their exercise at our house right now! And so it seems that we are living the life of any normal family.
But then there are things that remind us that we are definitely no longer a normal family. Our new normal involves things like figuring out how to pack 4 bow cases, a wheelchair, and 4 people into a car and make it work like that for longer so we don’t have to budget for a bigger, newer vehicle yet. Good thing that archery is just 15 miles away!
I have even found myself wishing for a bigger vehicle and not just in terms of DMD. With the boys growing and us traveling a lot more, a new vehicle seems normal and logical! While I know that it can be rather unhealthy to be wishing for things like that I am also enjoying the fact that I am wishing for things that are not on DMD’s terms.
We have also been enjoying Cole’s 7th grade basketball season. Cade has been enjoying feeling like part of the team by being the student manager. Seems normal until you factor in the wheelchair and that the student manager needs and equipment manager to help him out. Luckily he has one of the best friends in the world to give him a hand.
And then the biggest reminder for us is our quickly approaching clinic days. This is our big one where we see both cardiology and have muscle clinic. We are also adding in a neuropsych test. This test will help the school with the best way to approach Cade’s studies. I’ve learned that there is a strong correlation between learning disorders and DMD.
I become a lot more anxious as we near this time of the year. Cardiology appointments scare me to be honest. And then add onto that two more days of clinic and I can feel myself begin to shut down and not process any of it. But I know it is all necessary to help Cade in the best way possible. And so I will try to remain positive.
But for now I will go back to just feeling normal. So if you don’t hear from me for a while again you will know why!