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May 2008It 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. To all who are reading this…breathe in the precious moments, let them resonate in you and experience simply being… Linda |
