WALKING ON SUNSHINE

Chelsea woke bright eyed, focused and asking to go to school. It had been two months since she’d been and only rarely over that period of time did she even ask about school. But today with the beauty of spring just outside her window she was inspired. As is typical for our morning routine, I will put on one of her CD’s, this time grabbing an 80’s party disc. Appropriately the first song was by Katrina and the Waves, “Walking on Sunshine.” There could not have been a more perfect song for us to begin our day.

Chelsea loves music and especially loves to dance. Remarkably she seems to know all the current songs on the radio and most definitely knows all the old songs. To the best of her ability she sang and we danced and bopped about her room, me hovering over her to protect her if she fell. With a boost of extra meds to help ensure steadiness, her tube feeding, and the necessary several hours it takes to get ready, she was set to take on the day.

It was all hugs as Chelsea and I entered the classroom and were greeted by her amazing teachers and fellow classmates. I wish everyone knew how little effort it takes to make a huge impact on a challenged child. The world would most certainly be a better place. Here she is loved, nurtured, and made to feel that she is OK. Her days at school are usually only a couple of hours but that is plenty of time for her to feel accomplished, socially satisfied, and clearly ready for a nap.

During this week, Chelsea was able to get back to school another two days, experienced half a dozen seizures during several nights and was completely exhausted by Friday. For me, I let her be my guide. I am always willing to take her to school when she is able, let her sleep as long as she needs to or crawl in bed and read silly books with her when she is not up for anything.

I never know how each day will play out for her. She has not reached the point in this awful disease where she is completely bedridden, although she does spend a lot of time in bed. She has not had uncontrollable seizures like so many other children, fortunately. Her true essence is still present most of the time although more and more confusion is settling in.

Presently she is back in bed after sleeping 12 hours last night and only up for a brief period this morning. Her days are becoming less and less…aware. Are we heading down another path of horrible struggle as we experienced the last several months? I can only hope that we are not. Lafora has its own course that is unforgivably predictable and unstoppable. Each day matters to our children and us as a family.

Earlier this week I was asked, “Why do I write diary entries, and do I think anyone reads them?” I was somewhat thrown aback at such a question and thought how rude and insensitive and then I asked myself the same question. I write as a release for me. As caretakers we give all we have to the betterment of someone we love. As a mother it’s what I do.

My days at home with Chelsea are often just the two of us and if I allowed my mind to take over with its many serious random thoughts, I think I’d go crazy. As when my children were very young, we’d have constant chatter; usually nonsensical stuff. Today is not really very different than when Chelsea was younger, there is still nonsensical chatter, silly rhymes, sing-song sentences and hopefully smiles and laughter.

I write to let others into our world. For those that we have lost contact with but I know have seen this website, it will hopefully allow them to not be afraid and perhaps give them courage to expand their experience and reconnect. I think it so important for one to step outside one’s own comfort zone when the opportunity presents itself. How else are we to find out how strong we are in uncomfortable situations?

I write to connect with other lafora families, all of whom have their own stories to tell. I am just telling ours and I invite anyone to share their experiences of their lives and their children with our site.

I write as I am trying to discover who I am in this process with Chelsea and who I might become as a result of being her mom. I write because I can and my mind is still working. I write because I am trying to discover my greater purpose.

To the latter question, “Do I think anyone reads what I write?” I think yes they do and even if my diary entries are not read, I will still write for me.

So to some, it may seem we live under a black cloud of despair, but for me and Chelsea, we prefer to be “Walking on Sunshine”.

-Linda