Sunday, November 03, 2013

Dear Corry - mom of a PWN (for Julie Flygare's Dear Diagnosis Blogathon)

You are a mom of two grown children, a son in college and a daughter recently diagnosed with Narcolepsy with Cataplexy.  Your job as a mom doesn't end when your nest is empty, you still worry and wonder and pray for their safety and well being but when you find out your grown daughter has this disability you realize your role as a mom is still very important.  You have connected with Lindsey via cellphone almost daily since she left home and went off to college to make sure she got up in the morning for class or for work...you listened when she talked about the struggles with sleep and being tired all the time, suffering with the frustration of not having energy to do what she'd like, feeling nauseous in the mornings because of her delayed sleep phase condition, hearing the sadness when she lost a job because she didn't get up and to work on time, and you helped her get to the point of a diagnosis by making sure she saw the right doctors and got the sleep test and answers needed.

Of course you do all that because you are "the mom" and you would do anything to help your children succeed in life, to have the best quality of life possible and if that means sacrificing for them you will do it without giving it a second thought.  Having this diagnosis means you have answers and a reason for all the struggles.  It means you now can begin to understand a lot of the aspects of this diagnosis and the side effects, the characteristics that are part of the N/C package and not just a personality thing...and with understanding comes acceptance and change, possible solutions and answers but most of all awareness and continued unconditional love!  Now that you know ....you can move forward together.

You now realize in retrospect that this problem likely started in junior high and that she was always difficult to wake up but you never thought it was a bigger problem than her being a sleepy teenager who's was also just a nightowl like you! You will have thoughts about what caused your child to develop this condition, is it something you did or could have prevented, was it a vaccine you made your daughter get, foods you ate or some other environmental cause, genes you passed down, either way guilt won't help or make the N go away but perhaps someday scientists will find some answers that may help prevent others from going through this. You will ask God why but understand that He knows but we may not ever understand why some people get sick and some don't.  

You will continue to support Lindsey any way you can because that's what you do, to the best of your ability, you'll be there when she needs advice or a ride to the sleep clinic, you will raise awareness for this cause because it is not well known and because PWN's look "normal" people don't recognize it as a disability or the serious condition that it is. You will help her advocate so that she succeeds in all she does because you know she is strong and won't let this keep her down.  She will find a career that she loves and excels at and can use her vast talents to their fullest and you will continue to pray to that end.  Narcolepsy is not who she is it is just what she has! 

2 comments:

REM Runner said...

Thank you for this fantastic letter, Corry! The mother's perspective is so important to hear too. "Having this diagnosis means you have answers and a reason for all the struggles. It means you now can begin to understand.." I love this description. Thank you for supporting Lindsey's experience and the PWN community generally. Big smiles, Julie

Terrie Beneveds said...

Thanks for sharing your side of the story as a mother of a narcoleptic. My heart goes out to you because of the feelings of guilt you had thinking it must have been something you did or a medication she had been given. So many teens not being understood or properly diagnosed just because people do not know. Thanks for raising awareness and truly understanding what your daughter is going through. Take care.