Dear friends and family,

As 11:00pm approaches my family is asleep and of course, I am not.

This is not unusual for me anymore as my mind tends to have too many thoughts running through it. Usually I have incredibly ideas, thoughts, insights and general stuff I should be writing down running wild all day long in my head and I am either too busy doing whatever around here with and/or for Chelsea or I am in the shower or in the car and cannot write things down. I have decided tonight to start sharing some of my thoughts with you all if you don’t mind.

On April 15 (Sat.) it will be two years since our life began to change in the most unexpected, never imagined way. My (our) Chelsea began a journey that no one should have to travel, especially a child. Within that first year, I felt devastated with immobile sadness and despair. Compounded with that I saw many friendships we have carried over a number of years begin to change…people didn’t know what to say or how to act in this situation…we left Beth Chaim after 12 years of membership…my (our) life was falling apart. Collin entered his first year of college at the beginning of serious change for Chelsea. At this point, I felt I had lost a son (loosely speaking) due to his growing up too soon and now was faced with loosing Chelsea. At the end of that awful first year I was bitter and angry at G-d, our rabbi, and the many friends who had disappointed us. I slowly began to understand that our situation was not going to change, I (we) had to.

I turned 50 in August. It was shocking just to think I was a half century old but somewhere in my maturation a wisdom seed began to grow. It is said you can find joy in everything and that even in the most awful, traumatic and sad events, there are blessings. This I know to be true, if you look closely and pay very special attention. I have always been one to stop and smell the roses, probably to avoid homework or some tedious chore I should be doing. I remember being young and spending many, many summers in Texas walking the country roads exploring, or taking Collin and Chelsea to the beach looking for shells or climbing with them on the rocks in the park near our house in Chatsworth…there were many opportunities to stop and see what was around us and just enjoy. Whether it be a bug in the grass, a cloud shape in the sky, a mud puddle to jump in or a million other simple things, it was all there to enjoy.

Somewhere in our time over the last dozen or so years we had less and less time to just be. Until now. This is where the blessings begin. My days with Chelsea are not easy. I am not complaining, but it is tough to be someone’s everything. She still feels rather independent (although she really isn’t) but needs me to coax her along, guide her through her daily routine, help her with her clothes and personal care, sometimes feed her and be her buddy. On the days when she feels well enough she enjoys going to school or is busying herself with music, her books, and all the stuff she loves in her room.

On those other days, we are all suffering. Through it all, we have the most amazing connection…I am connected to her and she to me. We laugh at the silliest things, her observations are quite unique and she can really throw a zinger at you in the most honest way. Her changes have allowed her inhibitions to be nearly none…which is so freeing. She is so honest with her thoughts…her comment, “No Offense”, just cracks us up. She has the fun loving spirit, joy and unbridled affection for everything she comes in contact with much like a very young child. At the end of the day, I know we have had joy, maybe nothing serious has been accomplished but we have laughed, cried, had very tender moments and lived simply, or maybe sometimes just simply lived. Through all this, I have come to appreciate every little thing. I cry over the opportunities she will never have, the school dances she will never go to, her first kiss, boyfriends, sleepovers, jobs,…I live every day trying to make her smile and feel as though life were normal. (I am speaking from my heart but I know Howard is incredibly devoted to us and does an amazing job of helping us all cope and loving us unconditionally. We are very lucky).

Now for the story which motivated me to begin to write. Chelsea had an eye exam today with an ophthalmologist we all admire and love. He cried when I told him of Chelsea’s condition 18 months ago. While we were waiting in the quite full lobby, music was playing, people were shopping and we were sharing a magazine. A song Chelsea was familiar with came over the speakers and she started to move. The beat moved through her and she began dancing in her seat, singing the song all with a beautiful smile on her face. It was such a tender, spontaneous and freeing sight. I danced in my chair along with her. The eyes of many in the office began to look our way and their feeling embarrassed quickly turned their heads. How sad it was for them. We were living and loving in the moment, not embarrassed in any way. We laughed when the song was over continued to look through our magazine and waited until we were called by the doctor.

That little moment stayed with me all day and I began to think how sad it is that as we age the walls around us grow; fears, inhibitions, doubt, stress, worry, etc… It takes a mountain of awareness to keep those walls down and let ourselves be free. Through the innocence of my child, the lessons and blessings she gives me, I will grow. Believe me when I say I would rather learn this any other way but I have been given a situation, so I am trying with all my ability to make the very best of it with honor and dignity as Chelsea’s mom. I am incredibly grateful for the wonderful people who’ve come into our lives; maybe because of our situation; but nevertheless the relationships with those people happened because a window was opened by the closed doors of some of our old relationships. As we trudge forward on this journey, we will feel supported like never before.

As I leave you, please keep Chelsea in your hearts and prayers and remember to dance when you feel like it.

With love,
Linda