Ask Me a Question and I Will Tell You No Lies

Other people's reactions to our coping mechanisms for my daughter's conditions are expected, they are welcomed, they are innocent, but it does not change how they can sometimes embarrass us or remind us of how imperfect we are.

Several years ago, I was the family provider for my husband's grandmother.  I had a wonderful job that allowed me to take off quite easily when needed.  One day she was taken to the hospital.  We got up early in the morning to make the two hour trip to the hospital.  We took care of all of the paperwork and asked the questions that were needed and got her taken care of.  At one point, a nurse walked in and saw my daughter all curled up in a chair attempting to go back to sleep.  She made a big deal about it.  She was loud and got other people involved in the moment.  She reminded my daughter how young she is and that children of her age should be bouncing with energy. To any other child in any other family, everyone would agree, chuckle and move on.

My daughter's condition demands much of her energy and time. The autonomic nervous system controls the balance of control in the body.  It generates energy at the right moment, for the right amount of time.  It also saves energy, keeps the body from expending too much energy.  When it is time to settle down, it sends out a signal that says, "Hey cool it."  The body responds appropriately.

With Dysautonomia, this system is broken.  For my daughter, TLC, she never has enough energy for any task.  Her body is always wanting to sleep.  Most days she sleeps between 10 and 12 hours.  Sadly, this is never quality sleep.  Yes, yes, yes!  I know what you are thinking.  Too much sleep can also make a person tired all the time.  You are right!  But that is not the case here.

I used this as a teaching moment for my daughter, to remember how special she is.  I reminded her that people like this nurse just don't know, it was an innocent response.  She would have never said anything had she known.  It is moments like these that we can teach others and bring awareness.

If you see someone doing something different, ask them why.  Ask them about their condition, don't be afraid.  We welcome people that want to learn, know and understand.