It is mid October, the change of season is in the air and I am finally sitting down to put my thoughts on paper. I’ve written notes about my thoughts on events of the past season on scraps of paper, written in my head thousands of lines while showering or lying awake in the middle of the night. But the actual task of putting pen to paper seems to bring the reality in clearer view of the tragedy we live with daily. While I still try to find the joy and simple pleasures in our daily existence, it is wearing me down and the day to day tasks are often exhausting. Taking a moment for myself to scan my notes and gaze at photos brings me back to May…

Generally May brings such upbeat feelings as spring is in full bloom, the school year near ending and the anticipation of summer days are just around the corner. This month brings a procedure at Children’s Hospital, Mother’s Day, and Chelsea’s Prom.

Since February and the placement of the G-tube, Chelsea has felt uncomfortable and very self conscious about the long tubing coming out of her tummy. She’s experienced a bit of discomfort but mostly she hated the way it bulged out under her shirt. She would say things like, “I’m an alien”, or in times of frustration, “I’m going to rip this thing out.” The time has finally come for the tubing to be replaced with a much smaller low profile “button” called a mickey. It was to be a simple uneventful procedure at Children’s Hospital. For me, another day of worry, but fortunately we made it through without any issues. Chelsea hardly notices her tummy anymore.

While initially the G-tube worried and saddened me and I felt such a loss for Chelsea in her relationship with food, it has actually been a relief. Not only had Chelsea regained her ability to enjoy food, the mickey had eased up the medication and nutrition struggle for us both. I no longer worry about whether she is getting enough nutrition or whether she is up to orally taking her meds. It has become a non-issue now and thankfully something in this awful situation is made easier.

Mother’s Day turned out to be a lovely afternoon spent here at home with my mom, Chelsea’s Grammy and my sister, Chelsea’s Aunt Donna. Howard took care of us with a great meal, planned, prepared, and served on a beautiful northern California day. Mom brought several interactive playthings for her and Chelsea to play with. (Mom and I were inspired with new ideas for enjoyment with Chelsea while she was having an Occupational Therapy session; simple things like matching shapes, rolling play-doh and pressing large puzzle pieces together.) They spent hours being together discovering new and challenging ways to play. It was wonderful as I got a break from the day to day and was able to relax and Chelsea got to spend the day playing with Grammy and Aunt Donna.

I was missing our son, Collin, who’s away at school, and unable to come home for such a short weekend, but of course, he did call and spend a good amount of time catching me up with his life. We sure miss him…

Being so mentally active on Mother’s Day exhausted Chelsea for many days into the next week and she slept much more than usual. I was worried and anxious as “The Prom” at the George Mark House was coming up the following week. Chelsea was so excited. The biggest thrill, however, was that her brother, Collin, was flying home from Oregon to be her escort.

The week was challenging as it generally is but more so in that I desperately wanted her to be able to fully enjoy Prom. In my heart, I know her ability to participate in events such as this will soon be coming to an end; so for me I needed this night to be her own very special enchanted evening.

More and more, I notice the little bits of her slipping away. She had been rather steady with her seizures fairly under control and her April head injury healed without complication. The awareness of her small world remained mostly intact in that she mostly recognizes her surroundings and can enjoy simple fun things and the interactions with the few connected friends who spend time with us. Her overall physical ability has lessened; her gait is more unsteady and we rarely let go of her for fear she will fall. So for this week especially, I was extra cautious in making sure she was well rested and ready for the big event.

Prom Day arrives. Chelsea is so excited Collin is home and I am a nervous wreck. My worry that the day is perfect for Chelsea is taking my breath away as I frantically schedule the hours to include getting her hair done, being sure she takes a nap, gets her tube feedings and meds on time and most importantly that we have plenty of pictures to relive the event. This prom differs from a regular high school prom in that it is a special evening dedicated to those young adults who are not able to attend their own school prom but also that the family is invited, so that means we all dress up.

The night was magical with its red carpet entrance, beautiful décor, delicious food, music, dancing under the stars and Chelsea feeling like the “Belle of the Ball”. Aides were available on hand to be sure all Prom participants were involved in full capacity which of course for Chelsea, means she didn’t miss a single dance. The George Mark staff was expertly attentive to her issues and all the while dancing, she was held onto lovingly so she would not fall.

Watching her dance was so bittersweet and brought back such strong memories of her 17th birthday dance party just 7 months prior. Then she danced for hours without a break, unattended, and still with lots of great dance-ability and style. This night while feeling the music and moving rhythmically her style and form had dramatically changed. Her beautiful smile beaming while she moved, her eyes focused on whomever she was with, all the while, unaware of the others around her. She has lost the ability to take in the bigger picture or whole event, which I guess made her feel all the more special. This night was her night; her very own enchanted Prom made all the more special with her brother, Collin, the handsome prince, as her escort.

I was so proud of Collin how he rose to the occasion for Chelsea. He has missed so much of her daily life since she took ill just prior to the beginning of his college life at University of Oregon. I am always amazed at the connectedness and compassion he gives to his little sister. She and he have always been the best of friends but tonight he devoted and endeared himself entirely to her. From the way he’d held her when they walked, to the very end of the evening when he sat and laughed with her under the stars.

I will forever hold the magic of this evening with me and embrace the daily joys, struggles, and sorrows as being part of the experience of life. I have come to understand more and more the great importance of being “in the moment”. The ability to dance, sing, laugh out loud, and simply be has never been clearer. I do acknowledge the incredible struggle we have on this journey, but I choose to not write the awful details of what has been horribly taken away from Chelsea but rather to share some of the wonder we’ve encountered along the way. Through her unsolicited life battle with lafora and her tender sweet life, Chelsea has taught me and those who choose to connect with her the beauty and magic in fully understanding and experiencing a life of compassion, incredible patience, joy in the face of sorrow, and mostly and especially unconditional love.

Summer, Chelsea’s favorite time of year with its prospect of lazy mornings, hanging out with friends until late in the evening, endless hours at the pool, and our annual week at Capitola beach…that was then, this is now.

As Chelsea’s 11th grade school year comes to an end, I wondered just what this summer will hold for us.

For me, I was physically and emotionally exhausted, and seriously worried how I was going to get through the long days that lay ahead. All this time since her illness began, I have been her primary caregiver. Sure, Howard, her dad, helped out but for the most part it was me Chelsea needed, wanted, and called for night and day. It was me that spent all day interacting and rediscovering fun and interesting ways to play and pass the time; and I was not sure with the long days ahead just how creative I could continue to be.

Our local Regional Center, which Chelsea is a client because of her cognitive condition, had approved us for 20 hours a week to hire someone to help me attend to Chelsea, but I have been very reluctant to bring a stranger into our home. I never wanted Chelsea to feel as if a nurse were sitting bedside waiting on her. I couldn’t muster the energy around training someone to essentially “be me” for her in ways aside from personal care. The only way I was comfortable with the idea of somebody stepping in “as me” was if they were to appear more as a friend to her. I envisioned someone young, energetic, creative, entertaining and passionate to be in relationship with us, someone to become part of our family and to love Chelsea, but more importantly for Chelsea to love them. As in the movie “Mary Poppins”, Jane and Michael wrote down their ideas for the perfect nanny only to have their father dismiss their silly thoughts, tear them up and burn the pieces up the chimney; to be dispersed into the universe. So, as I have always done, I threw my thoughts about the perfect person I wanted and needed for Chelsea into the universe and waited. I’ve always held the belief that if you throw an idea “out there” and were patient; what you were looking for will find you; and for the most part that has held true for me…so we wait.

For Chelsea, she was showing more signs of physical and cognitive decline. She’d missed the last several days of the school year and was much more tired than usual. Our summer began with her slow descent into another unknown arena of lafora. For more than a week she slept sometimes 16-18 hours a day with little time awake in between; all the while seizure free. She was very calm; peaceful. Whatever internal havoc her body was in showed no outward signs of distress but it obviously was too exhausting and caused her body to shut down.

This “shutdown” phase looked exactly as it had when she was first admitted to Children’s Hospital back in February. At least this time because of her G-tube, I was able to attend to her medication and supplemental feedings while she slept. Confident in my ability to care for her and assured by her doctors she was OK, we waited it out. Although there was a bit of concern by our doctors that she may have been in “status epileptus”; a constant seizure state that did not show outward signs of seizure. After an EEG proved she was not “in status” we had no choice but to wait this phase out. The doctors stated this was not unusual and that she would most likely bounce back with at least some of her ability.

I was thoroughly stressed and emotionally worn out from her condition, such that it was, not only because of its unknown state but also because our annual Capitola beach trip was just a week away. I couldn’t imagine how we could be at the beach with her in this state, even if she did sleep all day. It would be physically too difficult for me to handle her. At least at home she has an electric bed which saves my back and other creature comforts we’ve adjusted to. Chelsea’s doctor suggested I check with the George Mark House to see if space was available for her for a few days of respite care so she could gain strength and I could keep our beach plans to rest and reenergize myself. So that is what we did, she was scheduled for respite at “camp” as she has come to refer to the George Mark House.

For the past two days, I’ve been at our regular spot on Capitola Beach only this year it’s very different from previous years; at the moment, I am alone. Howard has been finalizing work before he takes on the beach and Collin is away at summer school at University of Oregon and will miss our beach trip for the first time.

As I sit, coaxing the sun to become just a bit warmer, I am sad as I think about Chelsea. The beach is not as crowded this morning as it usually is probably due to the cooler temperature, high gas prices, and many California fires keeping people indoors and at home. Chelsea’s inabilities are haunting me as I watch a group of teens playing volleyball; something Chelsea used to do while here.

I am imagining what she’ll ask me if she can when I bring her here. Will the flood of her beach memories be present for her? Will she remember her former athletic self? Will she question why she’s not able to do what the others are doing? Will she ask me what’s happening to her body or will what’s happening to her mind prohibit those thoughts from materializing?

As it turned out, Chelsea gained strength from her days at George Mark. She had regained a bit of her walking ability with help and also was able to swallow small bits of food and was once again speaking although very little. Rather than using many words, she expressed herself with a joyful shriek or giggle as she would so happily say your name and gives you one of her famous long lasting hugs upon recognition. She had been told I was coming to pick her up to take her to the beach and was patiently waiting for me. While I think she understood, it’s unclear just what she actually can perceive but for sure I can say, she was excited to see me. She held onto my face for such a long time, smiling and looking at me and saying over and over “Mommy!”

Our time at the beach was wonderful…perfect weather, devoted friends and family to share our time with. It was so tender and especially bittersweet how everyone doted on Chelsea to be sure she got every bit of attention there was to get. We became “one” as we referred to ourselves as Team Chelsea and I think we all knew deep down inside that this beach trip may possibly be the last that she will be able to enjoy.

She was content to be on the sand and play or at least be in the middle of play around her. There was always plenty of music playing and true to Chelsea’s love of dance…there was dancing. We ate, napped, sunned, collected rocks and shells, took many pictures, ate smores by the campfire at night and relished in what was “momentary bliss”; normal summer fun.

 While the sun and so much interaction was exhilarating for Chelsea, it was also exhausting and did result in several seizures while she slept on those few days that week, but the resulting joy for us all will forever be embedded in the minds of “Team Chelsea”.

Upon our departure, Chelsea’s few days at the beach were just enough for her and my several days without being needed were just enough for me. It is always sad when Saturday morning arrives and we pack up our week away, say our tearful goodbyes, and hold onto the feeling as though for just a brief time there are no worries. I am so grateful for our incredible friends and family who worked hard to ensure Chelsea was well cared for and fully entertained but most importantly that she was especially loved.

Back to our routine at home, Chelsea seemed happy to be in her own room again. While she doesn’t say it in words, you can tell by the way she looks around getting reacquainted with her surroundings that she is taking in all that is familiar and is happy about it. Her mental state is not always clear and she often falls into bouts of dementia where she doesn’t recognize her world or those of us in it and considering we were coming from a week where she had been in two different environments, I had concerns of her adjustment back at home.

Fortunately, our homecoming was smooth. Being rested and ready for the long days ahead, I began conversations with a nursing agency to see if my “tall” order for help had been answered. As I wrote before, I had put together quite a list of qualifications that I needed for Chelsea and me aside from the certified nurse assistant training. I wanted to find someone we’d love upon sight and who would fit easily into our family; someone passionate about life, compassionate, intelligent, creative, young spirited, fun and one Chelsea would see as a friend. As I have always believed, if you “put it out there” it will find you; and so mid July, Colleen comes into our world exactly as I had envisioned.

My days immediately changed as Colleen became acclimated and available to us. The agency, through Regional Center, approved 40 hours a week for Colleen to be Chelsea’s CNA (certified nurse assistant) and for the first time in over 3 years I felt as though I had gained a bit of breathing room and would soon be able to get out, run errands, see friends or just take care of business at home knowing Chelsea was in good hands but the best part was that Chelsea instantly bonded with Colleen as I hoped she would.

The next few weeks brought lots of fun for Chelsea as we all adjusted to having Colleen around. I let them have free reign over the arts and crafts closet and everyday brought new creative adventures. The mood in the house seemed a bit lighter with me having more energy and Chelsea having someone else to be entertained with. We are fortunate to have great friends who came by often to enjoy the late afternoons and evenings in the backyard with us and that always brought a smile to Chelsea’s face and, of course, everyone loved Colleen.

Mid August and Collin finally comes home from summer school and Chelsea is thrilled to have her brother back. He is so wonderful with his little sister and is uniquely in tuned to her changes. While he doesn’t much talk about what is happening to Chelsea and how it affects him, I know he is in pain; but he never lets on to her. He lies in bed and reads with her or plays music for her and can always make her laugh…she just wants to be with him.

As the end of August is soon upon us, Chelsea once again showed signs of big changes. First comes her swallowing being affected which creates heavy drooling for several days followed by many days of multiple seizure episodes at night which lead to exhaustion during the day. She was slipping into another “shut down” phase…

We had a Make-a-Wish trip planned for our family to go to San Diego for 6 days beginning September 6th and we were so excited. It was to be a first class, all expense paid wonderful trip and while Chelsea was not entirely understanding of the whole concept, she knew she would get to be in the pool with dolphins and she was ecstatic about that. In my mind, I was afraid she would not be well enough to travel and heartsick at the thought that we may never be able to vacation again as a family.

As the new month began, Chelsea was beginning to go into another “shut down” phase and we would cancel our trip. It is another devastating blow how this awful disease is robbing our family of precious moments together. As I hear the rhythmic tick, tick of her Tinker Bell clock, I am once again caught in the thought of passing time…

Linda