Sometime in the early part of 2007, I had a mind shift. Chelsea had been diagnosed for nearly two years at that time and I needed so desperately to have a different focus to our lives. I was emotionally exhausted over her illness and the loss of what I had envisioned her future to be. While I don’t think it was a conscious decision, my perception of our situation had changed. I began to see the ever present joy and simplicity to Chelsea’s being. So, while I could write about the many horrific seizure episodes, countless falls that led to a broken nose, a finger broken in three places, numerous skinned knees, cuts, bruises, and increasing cognitive deficiencies, I would prefer to write about the beauty of our experiences. So here is a look back at a few of the highlights of 2007 for us.

I believe people come into our lives at a time when it is most appropriate for the relationships to blossom. Barb and Betty arrived at our house sometime in February toting an enormous platter of home baked goodies for us. They had heard from others we both know that Chelsea was not well and they wanted to reach out in support. They did not know what our situation was or the severity of her condition, only that our life was in turmoil. Mind you, in previous years we were friendly with each other but we were not in the same circle of friends. So, for them to show up at our house revealed so much about their character. We didn’t know each other well and over the several hours we spent together that day, a wonderful friendship began because of their tremendous act of kindness and compassion.

Howard and I had felt abandoned by so many of our friends because we turned inward the horror of our lives as it was much too painful to talk about what was happening to Chelsea. We were in utter shock and disbelief that something like this could even happen since Chelsea had a very active and normal childhood. Some of our core friends were supportive in the small ways they knew how but our larger social community had essentially disappeared. We were angry at God and everything that fell between heaven and our apparent hell.

Through Barb and Betty’s 17-year old twin daughters, Danielle and Alyssa, Chelsea felt an immediate connection. You see, the friendships she’s had since first grade had essentially disappeared once she became ill and no longer in regular school. As cognitively compromised Chelsea was to new information, she remembered her friends and missed them terribly. Dani and Alyssa doted on Chelsea and indulged her in the fun, silly things all teenagers want to do. They watched movies together, looked at the cute boys in magazines, listened and sang along to their CD’s, danced, and ate pizza. Their goal was to provide Chelsea with a seemingly “normal” teen experience.

These two exceptional young women instinctively “got” what was going on with Chelsea and figured a way to handle it. While she is cognitively challenged with many simple things, she is still a 17-year old girl who remembers all her favorite songs, remembers that she took years of dance, and remembers going to the movies and the mall. Chelsea’s lack of physical ability and her very slow cognition did not keep her from participating to the fullest in the girl’s visits.

Dani and Alyssa have brought the outside world “in” for Chelsea. Not a week goes by that they aren’t spending time together and Chelsea has come to love and adore them. I know they love and adore her as well and are much better people through their experience with Chelsea and her illness. Our two families have spent several days a week together over the past 10 months, sharing meals, stories, and incredible time and we are all the richer for it.

Through Barb’s compassion and need to “do something” to ease her sense of helplessness, the idea of fundraising kept coming to mind and thus Chelsea’s Hope was born. We are forever grateful for the friendship, love and support.

“Home Grown”, “Home on the Range”,“Home is where the heart is” and my favorite, “There’s no place like home”…Home plate that is. We had a fabulous experience this spring getting involved with Challenger Baseball (similar to Special Olympics). One of Chelsea’s classmates, Nick, had been involved with Challenger Baseball for a number of years and his dad Bruce was the coach. Howard stepped to assist him in coaching and the fun began.

For several months each Sunday afternoon, the teams from all around our area would gather at the park and play organized baseball games. Youth of all ages, all levels of cognition and physical abilities, some needing assistance, some in wheelchairs, and all in full spirit were there. We had been involved in team sports for many years with our son, Collin, as well as Chelsea, and never had we experienced such a loving win-win environment as this. Chelsea looked forward to Sunday afternoon when she would wear her uniform proudly and play ball. It took a lot of prep to be sure she would be able to participate; coordinating naps and sleep schedules for several days to be sure she’d be well rested and hopefully seizure free. It didn’t occur to her that she could no longer follow the game, put on her own glove or helmet unassisted, or even find home plate, but that didn’t matter. She could HIT THE BALL and when pointed toward first base, she ran. She used to be able to run like the wind and somewhere in her mind, she still could. Her wobbly, assisted run was beautiful and seeing her hair flow and the excitement on her face and hearing the crowd cheer was priceless. She was a winner. In fact, they all were!

Nobody asked who won, nobody experienced a strikeout and everyone cheered. Friends showed up with banners and volunteered to be “buddies” on the field. We are all looking forward to spring when, hopefully, Chelsea will be stable enough to play. Go team!

There’s never a bad day at the beach…July 4th week we always spend in Capitola. We had been very lucky, about 6 years ago, in getting a permanent week at the condos on the sand at the Venetian. Life is always great for us this week; lots of sun, plenty of friends and family, and safe, soft sand to toss a Frisbee or just lay out. Chelsea remembers the freedom she had in previous years, walking through all the downtown shops with her longtime friend, Sarah, getting a slice at Pizza My Heart, hanging out with all the boys who were regulars that week, and staying out till midnight near the fire pit and under the California moon and stars.

This year was very different in that she couldn’t go to town it’s much too difficult to meander around and cognitively too difficult to browse). Sarah and Braden (one of the beach boys) took great care in being with Chelsea; walking arm-in-arm on the beach, patiently playing Frisbee, and helping her roast marshmallows at the fire. These two exceptional friends gave a big part of their day to ensure that Chelsea’s experience was all it could be. Chelsea gave all her energy each day; there were some seizures during naps on several days and many hours where her energy was low but all in all, the week was full of terrific memories. I don’t know what next summer will bring for her medically but I do know this; July 4th week we will be sunning in Capitola. Come on down for a visit!

We have been very fortunate, since this nightmare of Lafora became part of our lives, that Chelsea has not been hospitalized. So many of the children we’ve made contact with have had hospital stays with very serious complications. She has been transported by ambulance three times when seizure episodes occurred and she has had several EEG’s, an MRI, and many trips for lab work. Hundreds of seizures and many falling accidents, but nothing like what we experienced Christmas week.

For several days prior to the weekend before Christmas, Chelsea was extremely tired and napped in the afternoon and still slept twelve plus hours in the evening. Between the Saturday before Christmas to Monday at 1:00am, Chelsea experienced six tonic-clonic seizures. These episodes were very violent and rough and lasted 3-4 minutes each. Those seizures ravaged her body so that she was barely able to wake more than an hour or so at a time. By Christmas eve (Monday,) she was left with such aftermath of those episodes; she was unable to swallow, was not communicating, psychosis and hallucinations were haunting her and she had such vacancy to her being.

We wound up at Children’s Hospital that evening where she received IV fluids and to see if her meds could be given intravenously. Fortunately, our stay was only about 6 hours and she was seemingly coming out of her ordeal. Over the next 6 days she began eating again and having less psychosis. Our Chelsea began coming home to us again. This was a terrible ordeal which left us numb, exhausted and once again trying to find some joy within this hideous situation we are presented with. Our life’s schedule is simple compared to years before when we were busy and always on the go. Lafora has halted Chelsea’s future and the future of many other beautiful children.

I take each day and try to find joy and relish in the simple things we can do together. We laugh, we dance, we act silly and most importantly, Chelsea knows how much she is loved.

We never know when a seizure may take her and not bring her back to us and back to an understanding of her life and family. I appreciate each moment I’ve been given with her and we try to take each day and live it to its fullest.

Looking forward, with hope for a miracle…