April 15, 2005, a day I will never forget. Chelsea had her first grand mal seizure. Her life; our life; has never been the same. The catastrophic dynamic of that first episode has shaped every aspect of our daily existence. Over the last several years, I’ve come to know intimately every aspect of her physical and mental being. Teenagers, as a rule are a private bunch, but when affected as we are, privacy becomes a non issue.

Initially as Chelsea’s abilities began to change we had friction between us as she felt I was invading her privacy by wanting to help with her personal grooming, dressing, etc. The absolute truth is that she could no longer do it on her own, or if she did, it would take hours to tend to the simplest task. She needed help to attend to her daily maintenance; but in trying to keep herself intact, her independence, which is a great thing, became a hurdle. Her maturing body, increasing modesty, and the need for privacy now were being invaded upon by her mom. Even the real basic tasks as tying shoes, getting dressed and brushing her teeth could take hours.

As mothers, we are caretakers. We are also teachers, and as our children are growing up, we teach them the “how to’s” they need to know to take care of their personal needs. As young teens stricken with lafora all that they’ve learned is slowly being taken away. Chelsea and I had reached the point long ago where bathroom privacy and personal modesty are no longer an issue between us. If she has to use the bathroom, bathe, get dressed, eat, move to another room, or just get more comfy in her bed, she needs help and I am there. I tell her that I am her “lady in waiting” and her daddy is there to make sure she is safe and warm. We are a team, the three of us.

Aside from the cognitive difficulties, Chelsea still possesses the same spunk, cheerfulness and zest she always has. I am amazed daily at the tenacity and fortitude she exhibits in trying to do even the simplest of things. Lately, she has been getting occupational therapy at home and has eagerly and enthusiastically tackled the puzzles and manipulatives to easily done by pre-schoolers. A task as simple as putting a block into the proper shaped hole or placing pegs on a board to copy a simple shape in front of her can takes many, many minutes. Even the processing ability to recognize a very familiar face can take moments.

If it is your face she is studying for recognition, and you are patient enough to wait…it is bliss. She’ll throw her arms around your neck, enthusiastically say your name and latch on for a most wonderful, loving, and very genuine hug that’ll captivate your heart. And for those who are not used to such tender and long lasting hugs as you pull away, she may tell, “I’m not done yet.”

As I’ve mentioned before in other months diary entries, the George Mark house has certainly captivated all our hearts and Chelsea had the chance to return this month for a few days of R&R from her doting parents. The George Mark House, a place she calls “camp” where she can feel independent being away from home, yet carefully tended to by wonderful, loving, trained professionals who “like at home” give her the royal treatment.

Her canopy bed and room had been decorated with a big “Chelsea” banner, crepe paper streamers and paper flowers with several volunteers and her favorite nurses waiting to greet her. She immediately dismissed me, even though I was in no hurry to leave. After checking her in and tending to the business of her stay, I went to say goodbye. Chelsea who was quite happy, totally acclimated, and not at all hesitant about my being gone said with an annoyed look on her face, “Why are you still here?” At that point, while my feelings were a bit hurt at her not needing me, I was OK to leave. Even though she is so compromised in so many ways, she still has a bit of normal teen in her. And for that I am grateful.

An incident that was not as warm and welcoming as the George Mark House was a necessary visit to the emergency room. During a brief period of excessive myoclonic jerks, Chelsea fell backward against the cupboard edge and split the back of her head open. Lots of panic, blood, tears and fear, several hours and seven stitches, add another injury to the many already incurred. My brave, young daughter over the last three years had had countless falls resulting in skinned knees, broken fingers, facial cuts, a broken nose and emotional scars that will never heal.

All Lafora children have suffered the ravages of this horrible disease. They are brave, young warriors forging the unknown enemy, with their battle scars, their incredible will and determination, and mostly their innocence.

Innocent children should not know depression. This is something fairly new to Chelsea. She has, for the most part, been joyful and loving, but more recently depression has shown itself. It is part of the characteristic of lafora, and while I try to minimize her feelings of sadness and despair, it sometimes gets the better of us. There are some days where she has no will to do anything, will cry for reasons she cannot explain and a general sadness will be ever present.

On one particular day, Chelsea stayed in bed nearly the whole day, generally out-of-sorts and having a very rough time overall, she and I settled in to watch American Idol. One of the few shows she still enjoys. TV doesn’t bring the same enjoyment it used to, I think because cognitively Chelsea cannot follow the storylines as before. But American Idol became a routine for us.

As we snuggled together, we listened as Brooke White played the piano and sang a Mariah Carey song. Chelsea and I were both surprisingly moved to tears. For Chelsea, I don’t know why she was so moved, probably the tone of the music or just maybe she understood the lyrics as I did. The lyrics spoke to me clearly as I watched Chelsea react to the music and I thought of my beautiful brave daughter. The song was titled “Hero” by Mariah Carey. Here is just a bit of that song…

It’s a long road
And you face the world alone
No one reaches out a hand
For you to hold
You can find Love
If you search within yourself
And the emptiness you felt
Will disappear
And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you finally see the truth
That a hero lies in you…

Our children are heroes, bravely facing their difficult world and their fate that was not chosen. We, their parents and caregivers, those who love them most, are also heroes as we venture this unknown road. The lessons being presented to us through love are immeasurable and incredibly painful, and while we may feel alone, lost and hopeless, we are not. Through our joining together through this website we’ve created a community. We MUST be present, strong and in the moment, as this is all we have. This is our life, their life, not as any of us would have written the story but never-the-less, the story as it is.

My hope for us all is that we take all that is presented to us through this awful ordeal and be better people; to ourselves; to each other. To those “less brave” that have chosen not to participate in the lives of Chelsea and other ill children and their families because of fear or whatever holds you back, I say: “Find the hero that lies in you.”

With hope,

Linda