Seriously, can anyone tell me who or what IS "normal"?? Don't we all struggle to find our own personal normal? Whether you are healthy or sick? So what IS normal?? Are YOU "normal"? I certainly don't think I am.
If you, as an adult, were diagnosed with a chronic disease that causes debilitating pain, how would you handle your day to day activities? Or any extra activities? Would you make adjustments to minimize the pain? Or would you continue to live life as always? Would you push on even further to live life to it's utmost fullest? Can you even answer those questions?? Now, imagine it isn't YOU that has been diagnosed. It's your toddler. You have been told that your baby or your toddler has a chronic disease that causes extreme, unimaginable pain and fatigue. What would you, as a parent, do? Can you even answer that? I'll tell you what we did. Since Jenna's diagnosis 4 years ago, we have in fact limited her activity. Isn't it part of our job as parents to protect our children from harm? So isn't that what we were doing? Protecting her? Well, in a sense, yes we were protecting her body. But what about her soul?! By limiting a child, are you not crushing their soul? I am not real sure what has woken me up to this. It could simply be that she is older now and has stronger opinions on things, I don't really know. All I know is, Jenna WANTS to do things. She wants to go jogging with me and her brother, she wants to play football with her friends, she wants to play on the trampoline with her friends, she wants to go in the bouncy house at the carnival, she wants to be "normal" like her friends! So why stop her? Initially I told her that she ISN'T like other kids. THEY won't have any pain after or while doing these things and she likely will. She told me, "I don't care.". Well, then why should we? If she is willing to pay that price, why should we stop her? Don't we ALL want our kids to grow up believing that they can achieve anything that they set their minds to?? So why should my kid be any different?! I am so very proud of her. She is stronger, braver, than most adults I know. You go baby girl, do it.