The first storm of the season is passing through northern California creating a wet and blustery day, as Winnie the Pooh would say, and the perfect time to hunker down and put my thoughts about the past several months on paper.

My mind and emotional balance have been on overload since our fundraiser in May. The energy and emotion from that day left me weepy, emotionally spent, and incredibly stuck on being able to move to a different place. I was deeply touched by so many that day who expressed their sorrow in not knowing what we faced; by the loss in communication and friendship over the past four years; or possibly the fear of the known course of lafora as we move forward. Strangely, I was strengthened and yet weakened by the deep emotion of so many who hugged me and sobbed. I know the tears were shed for Chelsea and the other lafora children and because of the inconceivable notion that something like this has actually happened to children that not so long ago were so vital. The tears of some of the teens present were very real as they expressed the sadness over the loss of their friend, Chelsea, but I also sensed their absolute fear of this disease, and of not knowing how to handle it or what to do.

I’ve struggled with my anger and sorrow at the former classmates of Chelsea, who graduated in June, as she would have, in that they were moving on with their lives, many off to college. I have felt that Chelsea had somehow been forgotten by them. While the more mature part of me knows that she really had not been forgotten but that their fear and immaturity of youth were most likely holding them back in making contact. I believe that most teen’s world revolves but a few inches past their own noses and that it is the exceptional few that see beyond that. This anger I have felt toward them certainly isn’t appropriate nor is it helpful to me. So, seeing those few girls that had been Chelsea’s close friends over many years, allowed me to let that bitterness go. I would hope that all those who knew Chelsea, remember her lively spunk, her willingness to try anything new, her friendly and eager personality, her loud and spontaneous laughter, and take her spirit with them as they move forward. She would have loved to have had the opportunity to explore life.

As summer approached, I knew this was going to be a very different kind of summer for us for many reasons. My son, Collin, who would usually be home by mid June had the amazing opportunity to travel with our neighbors for three weeks to India to attend the wedding of their eldest son. While this in itself was a big adventure, he also travelled the country with six other twenty somethings for several weeks exploring villages and areas not usually frequented by tourists. I was thrilled for him but sad that he was only home for two days prior to his trip. Chelsea, no matter how low she may be at the time, seems to light up when her brother is around. Often she will have fleeting thoughts of him and say his name and cry. While time has no meaning to her, missing her brother certainly does.

Our weekly trip to Capitola was cancelled in part because Chelsea could not make the trip and I didn’t have outside care for her, Collin was still out of the country and financially speaking, we have been hit hard. As if life and the daily maintenance of everything, while trying to have some semblance of normal aren’t hard enough, why does money also have to be something I worry about?

The day to day of life seemed very unmotivating to me. For maybe the first time in my life summer was not the relaxing and carefree time it should be. Yes, we had many BBQ’s with friends coming over but my spirits were low and tensions were high. By the third week of July, Chelsea began having bouts of what looked like grand mal seizures, although different from what seemed her norm. For a few days, upon touch, her body would convulse and seize at a moments notice, all the while being wide eyed and awake. It was frightening to see and horrible to hear as she would usually accompany these incidents with screams. By the third day of these increasing incidents, her body rarely stopped. Even the lightest touch would send her into gyrating, convulsing, screaming, fearful fits. Her body was exhausted from all the seizure activity, as were we. As soon as she’d drift off to sleep, it all began again. That Saturday in July she must have had over one hundred episodes. Finally after many conversations with the hospital along with medication adjustments, and being at our exhausted wits end, we planned to go the emergency room.

Howard and I were very concerned as to how we were going to get her there. Our first thought was that we’d just transport her ourselves, but every time we touched her, she’d begin seizing again. Thinking for sure if Howard and I tried to carry her down the stairs, we’d all wind up in a heap at the bottom of the staircase, so we opted to call 911. A few moments later an ambulance and fire truck arrived at our house.

It is every girls dream, I would imagine, to have an entire crew of handsome firemen in one’s bedroom, so here we were with three paramedics, five firemen, me, Howard and Chelsea. It just so happened that Captain Alex was on the first 911 call to transport Chelsea to the hospital when she had her first seizure 4 ½ years ago and he remembered her bright eyes and beautiful smile. As he bent down at her bedside and spoke to her, she lit up with flirty eyes and smiled at him. She made us laugh. Compromised as she is, she still knows how to put on the charm to a handsome guy.

It was such a sight to see this and for just a moment she was captivated by this roomful of gorgeous firemen. They gently wrapped her tightly in her bed sheet and swiftly carried her down the stairs for a safe transport to Children’s Hospital.

I was very touched by the conversations I had in the ambulance and ER that day with those firemen. As they asked questions and I explained Chelsea’s condition, I could see their eyes welling and their emotions not ashamed to be seen. They hugged me as they said their goodbyes, each expressing such tenderness toward Chelsea. Captain Alex and his men let me know that if we ever needed a strong back or help moving Chelsea, they’d be there for us within a moments notice.

While during our four day hospital stay Chelsea was given several different drugs to help relax her body. Finally after the second day, she settled down to a heavy much deserved slumber. Unfortunately, I was too overwhelmed, I could not be restful. She was connected to a 24 hour EEG monitoring that did not show seizure activity but turns out she had been experiencing extreme myoclonus, brought on by touch. I now know should this happen again that higher than normal doses of Ativan work amazingly well and that heavy pressure on her limbs help subside movement.

There were times when I would just lay across her body to help calm her down. Thankfully during these types of moments there have never been complications such as breathing difficulty which tends to be a common problem with lafora children. While it seems strange to say, we have been very fortunate in this very unfortunate situation.

As the remainder of summer rolled around, Chelsea did regain a bit of her spunky self and was able to have a few days stay at the George Mark Children’s House while I took time to get away to Lake Tahoe with my siblings to celebrate my mother’s 80th birthday. While getting together with everyone was great fun, it seemed like I was living someone else’s life. Howard was bogged down with work and unable to get away and Collin was finishing up a course at school and wouldn’t be home for another week. While I try to look as if life is rolling along just fine, it’s all an illusion.

Collin comes home for a few weeks before school starts in September, which is always such a joy. He is so attentive to Chelsea, sharing music on his computer, getting on her bed and reading to her, or trying to entertain her. Even though she is not very communicative and has lost so much of her mobility, she expresses her delight in her smiles at him. He does amazingly well with his little sister, not just out of obligation, but because they have always been the best of friends. I know his heart his breaking as he sees the changes that have come over her since he’d last seen her.

October 1st, Chelsea turned 19. She always loved her birthday and would begin planning weeks in advance for her special day. This day, she is completely unaware. I feel so heartbroken about this, but relieved that day and time have no meaning. It allows us to just “be”. I don’t know if or how I would be able to handle this journey if she were capable to know really what was going on.

She did receive some special gifts and an overnight visit from her Grammy as well as visits from some of our closest friends, but what delighted her most were the balloons. She gives her absolute all in trying to pop them. It’s actually quite hysterical and the more we laugh, the harder she squeezes until the final “POP.”

As fall begins to settle in, her abilities have dramatically weakened. It is more and more difficult to get her down the stairs; her communication is mostly misunderstood as she mumbles in trying to get the words formed and the saddest, as of late, is her lessening ability to be entertained. She has begun retreating to a far off place, more and more often. I wish I knew if she were thinking. If for only a moment, I’ d like to see the world from her eyes, be in her head, see what she sees, maybe I wouldn’t be so afraid. As her doctor had told us from the very beginning, lafora is more difficult on those looking in than from the point of view of those affected. I only hope this to be true. For whatever the case, Chelsea emits joy, most of the time, and it seems that she sees the world around her so purely and without stress and bias. Such a rare gift we should all try to own.

Here’s to finding one’s peace…

-Linda