It’s been two weeks since Chelsea’s deep descent into what seems to be a peaceful place. Most of her days have been in deep slumber with just four or five waking hours per day. During this time she smiles, but is rarely speaking, is not eating, nor can she move her limbs very freely. She remains in bed.

It was wise to have cancelled our Make-a-Wish trip as difficult a decision as that was. One just never knows what each day will bring and the thought that she’d be in this “shut down” phase away from home sets me in a panic.

I also chose not to enroll Chelsea back in school. She’d be a senior this year. While she did occasionally go to school last quarter, it seems too much of an ordeal these days to even consider. My heart is heavy with this decision and as normally a senior’s year is so exciting with the anticipation of college acceptance letters, senior trips, graduation and a bright future, none of that can happen for Chelsea and I am devastated that this is our reality. I am terrified if she were able to go back to school, even if only a few times, there may be mention of something happening for seniors which may spark memory for her. I don’t know if she “can” remember how her life used to be, her former self, but I can’t risk her falling into a depression as mostly she remains sweet tempered, joyful and smiling. I play on her temperament and try to maintain our “new normal” as best I can with our own display of silliness, art, songs and music to keep our days happy.

In all honesty, this is my issue. I know I have harbored hurt and angry feelings at many kids she went to school with, her former friends, who chose “out” of her life because of the fear of her illness. It’s not their fault really, just the unknown and unfortunately no guidance was given to help any of us face this fear. Four Septembers ago when Chelsea first began high school, she was so excited and anxious to participate in everything and within that first month, life has never been the same for her or any of us. For us as a family we didn’t know the word “lafora” but knew something very, very serious was happening. We couldn’t talk about it without breaking into tears and heavy sobs. So on one hand, I don’t really blame the kids as it is unimaginable that a teen should be facing a friend who’s slowly dying. On the other hand, illness and tragedy are part of life and needs to be faced.

The reality is she is not in school because she is not able and second to that, I can’t face those kids whose lives are normal, functioning and bright with a future when so much time as passed without connection. We have created a different kind of life for Chelsea at home and with the help of a few devoted family friends life is at a “new normal.”

While the days of September droned on quietly and with much difficulty for Chelsea, I dealt with getting the ball rolling for her to receive Social Security benefits as she would be 18 on October 1st. Never in all my life would I have expected to be doing this. It was a difficult and painful process to discuss with a clerk why I was applying for Social Security Benefits for my 18 year old daughter and to further explain the horrible details of her disease and how it had left its mark on her by its progressive and degenerative nature which had created her, now, cognitive and physical disability.

Had I not been gently pushed to initiate these and other eligible benefits by several of Chelsea’s social workers, I might have put it off. I am so grateful for the guidance I have received throughout this process from our social workers, Diane, at the George Mark House (www.georgemark.org) and Leslie from Regional Center. These very caring, knowledgeable, and diligent women have educated and encouraged me on which county, state, and federal services are available to Chelsea. These benefits help cover medical expenses, offer occupational and physical therapy, evaluation for and help with obtaining necessary home medical equipment, connections and cost coverage for in-home skilled nursing, as well as lending me an ear when I needed one.

Part of what I have learned over these past several years is that it clearly takes a team of knowledgeable people to direct and guide us when we are so wrought with grief and shock facing a terminal illness. We were and are fortunate to have been connected to great resources by Chelsea’s doctor, initially, even though we were not in immediate need of assistance. It takes time to lay the groundwork for services to be in place and while I never would have imagined needing such service, here we are in need for every bit of it. I feel an obligation to share this information as I have heard too many incidences where children and families were not directed to social workers to help manage and plan for these imminent changes.

October 1st is Chelsea’s 18th birthday and she is in a state of uncertainty. She has not asked about school and doesn’t know her birthday is just days away. When she was younger she’d mark the days on her calendar for a full month ahead as a countdown. She’d make plans and everyone knew her birthday was coming, but not now. I contemplated just letting the day pass uncelebrated. My heart couldn’t allow that to happen though, I feared one day she’d ask how old she was and I wouldn’t be able to tell her that her birthday came and went. We celebrated quietly with Chelsea’s Grammy, my mom, spending the day and night with us. Slowly over the course of the day we presented her with fun, silly and very entertaining gifts.   Her favorites being a fantastic 30” ball with a huge balloon insert called a “Rib-it-Ball”, and a childhood favorite, a 4’ Bozo Bop Bag, a weighted punching bag, which had us all in stitches as Chelsea came to life hugging, punching and giggling this thing all day.

Our good friends, some of Chelsea’s favorite people, Geoffrey, Karen and Sarah, shared the evening with us bringing Chelsea’s favorite dessert, a carrot cake without raisins to top off the night. While her birthday did not hold the same festivities as past years it was a sweet and private celebration with loved ones.

As fall continued we had our ups and downs. There were many seizure filled nights which meant interrupted sleep for all of us. Difficult nights rolled into exhausted days. As a general rule for the last 20 years since having children, I have not been one to take naps during the day or go back to bed in the early morning when all was quiet. But now that I am older, feeling sometimes physically and emotionally exhausted from interrupted or very little sleep, I find myself much too tired to begin my day after I tend to Chelsea’s morning meds and feedings. So for many mornings, since we have no schedule aside from a medication/feeding one, I find myself back in bed for a few solid hours of deep sleep. Of course, while that feels great, my day’s rhythm is thrown off and often I am left somewhat empty.

While I have always put my best efforts forward and have tried to find the positive aspect of our days, I can’t help but feel desperate and blue at times. Life in general has been difficult for us this year dealing with what’s going on with Chelsea but like so many others right now we have been financially slammed. The constant worry about tomorrow, stress and strain that life is putting on my 22 years of marriage, providing a good college education for Collin and the general worry about Collin and Chelsea’s future makes it hard to muster the energy and motivation to get out of bed. But somehow we do…and with morning coffee and usually a smile and a possible few words from Chelsea, as we quietly creep into her room, we face yet another day.

Chelsea’s general state as of late has been quiet. It seems she wanders off to a content space in her mind, often not clear to what’s happening around her, but sometimes without warning she returns with a giggle or a few words. Those moments are precious. She is still capable of sharing her generous hugs and smiles, wonderful words, although few and far between, and a twinkle in her eye that lights up the room.

As Thanksgiving approaches and we wonder where and how to celebrate the holiday I feel drained and want to let it too, pass unnoticed. Chelsea and I join my mom, sisters and family in Auburn. It is difficult having Chelsea away from the familiarity of home but it is necessary as I need time away from our own walls to regain a bit of strength. Howard, with much to catch up with at home, chose to stay behind and wound up spending Thanksgiving with our good friends, Steve, KT and their family, which was a special treat and great for his reenergizing as well. Collin chose to stay in Oregon as he only had a few days off school, celebrated with friends, and so this marked the first time we have not been together as a family for this holiday.

As we head toward the December holidays, the energy in the house seems less than festive and what I hold to be tradition for the holidays requires lots of work and attention, I find myself questioning what I can do to liven up our surroundings and create the illusion that all is well within our personal world.

Linda