What Does It Feel Like... My Child With Narcolepsy
Many friends and family members wonder what the big deal is... so she's a little sleepy now and then. So what if she laughs and falls... all little kids fall down a lot... she's FINE! Look at her, you can't even tell there's anything wrong...
While they must think comments like these are helpful, they really aren't! Makenna, my 6 year old little girl, has an "invisible disability". She looks normal (most of the time), she acts normal (most of the time), she's sharp and witty and can keep up mentally (most of the time)... so she's fine. But she's not.
She'll never be the same again. She's lost more than most people realize! Add up the hours of sleep she now needs that a normal person doesn't... Times that by 75 years of living... how many YEARS of being alive and awake and enjoying her life will she lose? Well, I've done the math - she will sleep away *12 years* of her life that had she not become narcoleptic
, she would have been able to enjoy! Add to that the fact that her awake time FEELS like how a normal person feels after being awake for a solid 30 hrs straight. She's always tired, she's always fighting the urge to lay down and go to sleep.
What does it feel like to be her? Ya... pretty sucky I'm sure. What does it feel like to be her mother... Let me share.
If you are a mother, you know that there isn't a damned thing you wouldn't do to protect your child from harm or pain. Yet, I am helpless as I watch this THING take my child's quality of life away. I can't fight it - it is an invisible force. It makes her fall down paralyzed when she is enjoying a moment of humour, when she is feeling a strong loving attachment to someone, or when she is proud of an accomplishment. There is nothing sadder to me than to watch her running over to me with a picture to show me, only to get half-way there and start slowing down... down... down... till she stops, drops the picture, loses her smile and then crumbles to the ground 5 feet from me. Why, because she wanted to proudly show me what she did, and cataplexy has stolen the moment... 15 seconds later, she slowly rises, finds her picture, picks it up and wobbly walks to me and with a slurred, quiet, strained, almost silent voice saying "Look... at.... my.... picture.". I die inside each time.
The first thing I do when I wake up each morning is check her. I need to keep track of the time all day long. When she wakes up the clock starts ticking... in 2 1/2 hrs she will need to have her first nap. She will need to nap again 2 1/2 hrs after the first nap ends. I watch the clock constantly, taking note of what time she wakes up and what time she goes to sleep all day long.
When organizing her day, I must always be thinking about how to fit mealtimes into her wake time. Quite often, she can't eat with the family - she must eat alone because the meal needs to be eaten
in the middle of her naptime. We try to adjust our meal schedule so she can join us, but with appointments, obligations and other children's activities, sometimes we can't. If possible myself or daddy wait so someone is eating with her... she hates eating alone, even if you are sitting at the table with her.
I've found most people start out sympathetic to her special needs, but as time goes on, these same people become less concerned about HER and more concerned about how accommodating her affects them or their plans. When it is suggested that her nap might wait an hour or so, it drives home the point that THEY don't understand. I must advocate for her needs. She needs to sleep when she needs to sleep. It is a medical need, not an entitlement or priveledge that can be taken away when it doesn't suit the environment or schedule.
I worry about her future.
She's 6 yrs old today. When she falls down, no one really reacts. Her friends fall down too. It's what kids do, and they aren't embarrassed by it and they don't get hurt and no one laughs at them. When was the last time you saw an adult fall down? Were they embarrassed? Were they injured? Was it kind of funny? What if YOU were the one who fell... not occasionally, not once a week, how about 20 or 30 times a day? Some day she's going to be a grown up, and if she can't take an effective medication, this will be what she will need to cope with.
At 6 yrs old, no one suggests that she's lazy because she needs to sleep AGAIN. But what about when a 16 yr old sleeps till noon or naps all afternoon... lazy? depressed? unmotivated? weird? antisocial? I'm sure there are many other descriptives that people use to describe a teenaged narcoleptic because they don't understand that it is a recognized sleep disorder, not a state of mind that can be shaken or snapped out of.
There are so many unanswered questions... will she some day be able to drive
? Can she have a baby? Can she safely care for a baby? Will she be able to work? Will she be able to live independently? Will she find a husband who will love her inspite of her condition, knowing she carries a defective gene that can be passed down to their offspring? How will she cope when she's elderly and we aren't around to take care of her? I know I shouldn't get ahead of myself - I should worry about today and today alone, but... I'm a mother and mothers think about their children's futures. That's why we try to be the best parent we can be, why we push our children to do their best in school, why we teach them manners and right from wrong - because ultimately, we want them to succeed in the future. I want nothing less for Makenna. I worry.... I grieve for what she's lost.... I feel helpless.... I wish it were me! If I could only take this burden from her I'd gladly accept it so she could live a normal life... This is what it feels like to be the mother of a child with narcolepsy.