“A Step Removed”
– contributed by Barb Goldsmith, Co-Founder

I’m a step removed…

I wonder how many people really understand what it is like to be the primary caretaker of a neurologically compromised young adult.

I am a step removed; I spend a lot of time with Chelsea and her family. I see how much work there is involved in not just caring for her, but loving her through this time. I watch as they care for her- minute –by- minute, hour by hour, day by day, through the night, seven days a week. We all use the term 24/7 when we discuss the rigors of our daily life. But 24/7 is reality for parents of Lafora children.

The term “neurologically compromised” is such a cleaned up version of Chelsea’s life.

Chelsea is beautiful, precious, precocious and deserving of a better fate; Chelsea IS neurologically compromised but when observed on a day to day basis, when one is living through it and trying to separate the work from the love, the rigors from the rewards, it is no longer as sterile as the words suggest.

Caring for Chelsea is a 24/7 whirlwind of constant work. The rewards are plentiful, of course; a smile that lights her face from within, a giggle that escapes from her mouth, a hand inserted within yours, a sigh of contentment when she is fed something that tastes good.

But the work is endless, backbreaking and terribly frustrating.

I am not the mother of a neurologically compromised daughter. I am a step removed.

But this is what I know and this is what I see!

I see an 18 -year old girl who is no longer able to attend to her most basic needs. For some reason, of all the things that have happened to Chelsea, this saddens me so much. Even a year ago, Chelsea was keenly aware of her modesty and asked that her privacy be respected. Her bathroom needs were private and while we would assist her in getting to the bathroom, we would respect her desire to be left alone while she attended to her needs. Today, she wears a pull-up- and is rarely aware of her bodily functions.

A year ago, at her 17th birthday party, she looked like a princess and danced- with everyone- like a disco queen. She didn’t stop smiling- and though compromised in many ways- she was so unbelievably happy that everyone celebrating with her was able to bask in the glow of her obvious happiness.

This year, her birthday came and went; acknowledged by a few of us with a cake and a treat and some quiet hugs. She barely knew that it was her special day.

I am a step removed and I wonder, could I do what Linda and Howard do on a day- to -day basis?

Could I sleep with a baby monitor in my room every night, my ears and thoughts attuned to every sound that comes from her room? Could I physically lift her and carry her from bedroom to bathroom-back and forth multiple times?

Could I physically lift her and dress her and put in the time to not just clothe her, but to respect the buried within fashionista that she once was and make sure that her clothes are ’cute’ and not just easy to put on?

I ask myself, could I take her up and down the stairs- or would I choose to just keep her in her room, day after day?

Could I remember that one of her favorite foods is French onion soup and spend hours making it (hours that are crammed in between the constant caretaking) so that she can taste something that she once loved? The reward could be as small as three little slurps, but the real reward is that little smile she gives when she likes something.

Could I haul her in and out of the shower, wash her hair and brush and dry it so that it is not only clean, but also looks cute- again, remembering the joy and pride she had in her appearance?

Would I spend 30 minutes of what could be my free time, painting her finger and toe nails- not so much because she notices now, but because she used to notice and love the girly things?

And would I even bother trying to shave under her arms and legs? It probably doesn’t phase her anymore- hair on the legs, hair under arms!

Would I remember to roll on the deodorant daily and make sure that I slather her skin with moisturizers that smell great and keep her skin soft? Or would I tend to the basic needs and let the rest go so I could sit a few minutes longer and put my feet up for a much needed-break?

I know that when my kids were toddlers, I couldn’t wait until they were potty trained so that I could be done with diapers and they could take over their own bathroom duties. How would I feel having to change my own 18 -year old daughters pull-ups? I want to believe that I would be as caring, patient and loving as Linda is, but it is demanding in so many ways. I see it often as I spend a lot of time with the family, but I am a step removed.

And these are just some of the physical tasks required. I’ve not even mentioned how often the sheets that are soaked through need to be laundered, the teeth brushing, the flossing, the tweezing and the feeding-spoon by spoon, that is required. Then, of course, there is the medication schedule- some of the meds administered by mouth, some through her g-tube that needs to be flushed and cleaned and properly cared for.

I am a step removed from being a 24 -hour a day on call nurse, friend, mother and entertainer.

I get to hear- the next morning- over a phone wire-about how many seizures Chelsea had the night before, how many times she soaked through her bed, how many moments of unknown fear overcame her as her mind deluded her into believing that worms or snakes were crawling all over her.

I am a step removed and my heart aches-daily- and because I am a step removed, I get to come home at night and go to sleep without a baby monitor winking at me, without the fear of seizures, without the alarm ringing to remind me of a medication dose.

I am a step removed from taking fulltime care and giving fulltime love to a neurologically compromised teenager. Her body is that of an 18 year old; her mind operates on a totally different level. Her biological needs are those of an 18 year old, her physical abilities, like those of a young toddler. She no longer can walk unattended-though she has moments of jumping up from the couch and taking off like a bat out of hell- but that is no safer then allowing your toddler to wander near a fireplace or a steep staircase.

I am a step removed and I see the constant vigilance that is required to be the caretaker and love-giver, the nurturer and the nurse to a neurologically compromised teenager.

The job is endless, sometime thankless, and most certainly, back-breaking.

I am a step removed and there are days I come home and cry my eyes out. I live in constant awe of Linda and Howard and all the other parents of Lafora children and all the parents of other children who are neurologically compromised and whose lives are now totally altered.

I live in awe of how love for a child overtakes physical exhaustion and how hope is stronger than fear. I live in awe of parents who can smile through the pain and who manage to get up every morning and start the whole process over again- of caring and nurturing, of loving and providing and go to bed physically spent but emotionally clear that they are the life support that keeps their child going.

I am a step removed; I am the co-creator of Chelsea’s Hope and a friend of Chelsea, Linda and Howard.

We need your help. We need to raise awareness about this disease; we need to help the doctors and researchers race for a cure before the disease wins the race.

Donate what you can, and if you can’t help out with funds, please pass the information about this site on to your family, friends and neighbors.

Thank you so much,

Barb