As the holiday season is upon us, I try to find the energy to transform our house, or at least parts of it, to reflect a festive mood with garland, twinkling lights and gifts. Over the last several years the holiday cheer has eluded me but for the sake of tradition I shop, wrap, and share a few gifts with those I love.

Chelsea, while thrilled with seeing the transformation of our family room, remains for the most part, kind of in a haze. Her abilities have diminished substantially and for the most part, stays put where she is planted. She can no longer “play” as she had earlier in the year. Her fine motor skills no longer serve her well, so things like sticker books, which were so much fun for her and occupied hours of her time, are unfortunately an activity of the past. She is, however, entertained by those around her and welcomes company with open arms and still loves and enjoys music and watching her favorite, Justin Timberlake, in concert. Still after dozens and dozens of times watching JT he still moves her to groove as best she can and it is infectious to watch her, so we and anybody visiting gets involved in the show with their own moves.

It is quite entertaining, uplifting and unique to experience because if she were a typical 18 year old she would NEVER be doing this with us. So to look at the positive amid the horror of this disease, we win because we do get to play, dance and recreate the young side of her life over again. Would I trade, you bet, but I don’t have that choice so we gather all the good we can out of each moment.

While I am on the subject of good moments, I’d like to share something special that Barb (co-creator to the site) and I experienced this month. We are part of a special group of friends that meet one Friday night per month for dinner to celebrate our friendship and share Shabbat. Throughout the course of the year, we all contribute monthly to a “charity box” with the intent of donating to a worthy cause at years end. This year the recipient of part of our fund was Tricia, who is a single parent and mother to Kris and Angel both with Lafora. Tricia lives in a rural area several hours from me and has suffered tremendous hardships over her lifetime and especially over the last dozen or so years and was in need of assistance. She has had many years of financial difficulty on top of the emotional and physical struggle of having two children with lafora and another child with difficulties of his own. Neither Kris nor Angel lives with their mother as situations have put them where they are able to be cared for more effectively elsewhere. She herself has had many health issues which had prevented her from making significant changes to her situation. While the details are hers to tell, I would like to share our experience in meeting her that day.

I have spoken to Tricia many times over the course of the year, was very familiar with her story, but had never met her. We took her to lunch which was a treat since this is something she never does and spent time getting to know each other more personally. While her background and story are much different than mine, we shared one thing in common, Lafora. I had the sense that she had never known people who genuinely listened and cared about her. She presented herself as truly grateful and gracious in her own mild way and brave beyond words to be living such tremendous hardship.

Tricia, in old clothes that were much too large for her due to a 50 pound weight loss this past year, had a jacket that was tattered and torn and not adequate for the typical cold mountain temperature of winter. We chose to take her shopping and treated her to a new winter coat and a light weight jacket for when she is able to go walking to continue on her plan to regain her health and loose more weight. She was like a kid as she hesitantly looked through the clothes racks, as it seemed she’d not in many years been able to buy something new for herself. We also made sure she had enough money to adequately stock her shelves with good food and a few extra dollars to buy some personal goods for her and her other child Joey.

We had intended to pay a visit to her son Kris (22), restricted to bed due to the progression of lafora, who resides at a convalescent home two hours from Tricia, but ran out of time. We did leave a cozy pair of new flannel pajamas and a soft robe for her to give to him on her next visit. As we said our goodbyes to Tricia, we left to travel to visit Angel (17) who resides in a residential care home about an hour and a half closer to our journey home.

She had been waiting all afternoon for us and was very excited at our arrival. Her mother had told Angel about Chelsea last year and she knew we were coming to visit her. She resides in a family neighborhood residential care home which was clean and decorated for Christmas. Angel has her own small room with her few personal possessions. She is a sweet and loving child aware of her difficulties. She uses a walker/wheelchair, has very delayed speech combined with slow cognitive process and a slight tremor in her hands. Knowing what I know about lafora and seeing the changes in Chelsea over time, I recognize the signs of this disease and see Chelsea in Angel. It immediately connects me to her. She told us about her new school and the cute boy there and that she misses her mother and brothers.

Barb and I were so excited to bring gifts for Angel. We gave her a new winter coat, which fit her perfectly and she loved the fur collar. We also gave her a new TV/DVD combo for her room along with 6 new DVD’s, some of Chelsea’s favorite movies. Donated to Angel by Barb’s daughters, Dani and Alyssa, was a portable DVD player so that she could watch movies on the long drive once a month to see her mother. It was a very sweet and special time for us and we made a promise to Angel that we would be back to visit her.

This experience was both heartwarming and heartbreaking. I cannot even begin to imagine Chelsea being taken from home and placed so far away. My mind goes to how Angel must feel ending her day without her mother to love on her, read to her and tuck her in at night like I do for Chelsea. Tricia told us we have made her year though our kindness and she is forever grateful. As Barb and I drive home nearly in silence we both commented on how fulfilling this day has been. We were able to support a family in need with generous donations from our friends and connect with another lafora child.

Lafora has changed our life and the way we look at things. This day reinforced our own knowing of how blessed we are in our own situations, how lucky we are to be living where we do, the fact that we have wonderful and supportive friends and mostly that our families are intact and able to stay together.

As the year comes to a close I am grateful for what this journey has given me and will work on finding new rejuvenation to propel me into the New Year.

With blessings,

Linda