06/14/17 Have a beautiful day

Today was mostly a rest day (until around 1:30PM), but this afternoon we needed to get out and have some sun and exercise. 

Like last night..and almost every day/night, Dax’s stomach was really bothering him again, but he had a great time at the pool. My mother got him a ginormous floating duck for his birthday. He finally got to give that a go. That went over well with both boys. 

We do rest, but we try our best not to stay down. Sometimes, that requires tough love and invention on my part. If he is really sick, I can tell, and I wouldn’t torture him to go too much. But, the usual discomfort we have to fight through and get out and about. 

I’ve mentioned this before, and I’m sure I will again. Ehlers-Danlos requires balance and listening to your body. Allowing yourself to curl up in a ball and give up is not an option (easier said than done). You have to try to function enough to maintain muscle mass without overdoing it and becoming wheelchair bound or bedridden.

It isn’t easy to push through, but this time of year is optimal for Dax. The sun, decrease in circulating germs/infections, and ability to chill through most mornings to recoup really helps. We really have to use this time of year as much as we can to prepare his body for the upcoming fall/winter. 

I’ll never forget the doctors who were accusative, because his decline seemed to coincide with the school year. It made me so angry. Dax LOVES school and wants to go so badly. I wish I had recorded his sadness the day that he had to withdraw from school, knowing he wouldn’t return. Then..then they would know. I’m so fortunate to now have doctors that listen and are knowledgable. (It is crazy what a trip to genetics will do). 

Now, it is absolutely apparent that the other variables, not involving school itself or a desire to not-go on his part were to blame: sick children and prevalence of germs, the stamina of a school day, the classroom and outdoor temperature that his body can’t cope with and adjust to, the inability to rest or eat or drink when need-be, trying to learn while feeling flu-like, noise, hard chairs, up and down, to and fro..and the overall demand of getting ready, moving, writing, concentration, etc etc. 

Can you imagine trying to go to school sick every single day?? I can’t. I can’t imagine staying sane feeling like he does every single day, all the while looking completely normal..no one being able to see his pain. And, look..just look at him. He smiles. He plays. He enjoys his life as much as he can. His brother and our family and friends root him on. It’s amazing. He’s amazing. 

Chronically ill children and their supportive siblings are heroic. There’s no doubt about it. They give so much. They say and so many inspirational things that most people don’t ever have the privilege of witnessing. 

Have a beautiful day! Enjoy each precious moment. That is how you get through. 

Dax taught me that. 


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