The month of February 2008 was a blur. For several days prior to February 4th, Chelsea began showing signs of increased difficulty in swallowing, more myoclonus and increased seizure activity. She had this trouble for a brief period once before and we wound up in the emergency room on Christmas Eve. After many hours of trying to get her medications down and several conversations with the doctor it was decided we’d better come to the ER as a precaution but since it was Sunday night, we’d wait until morning.

Monday, February 4th was the beginning of our lost month. Fortunately Dr. Davis knew we were on our way that morning and we were admitted to the ER right away. Time had a way of standing still as I waited 8 hours with Chelsea and finally Monday evening after several seizures and disorientation we were being admitted to the fourth floor of Children’s Hospital Oakland.

And thus began Chelsea’s slow descent into a very deep slumber that for the better part of the next four or five days was how she spent her time. Her overall demeanor was of peace not pain nor fear and on occasion she’d let out a quiet giggle and a smile as I’d peek under her little lambie eye mask she wore. That lambie mask turned out to be her most precious possession during her hospital stay as it allowed her to escape the lights, sounds and unknown arena which was our world for the time being.

For me, as I lay on the chair bed next to her that first night I remember having no thought, I couldn’t cry, I was exhausted, in shock and completely numb. It was a surreal foggy world that some how was strangely familiar to me. While I had never spent the night in the hospital except for giving birth or on the rare occasion to visit someone for a brief period this experience seemed eerily familiar. Was it the many hospital dramas I’d seen on TV or was it my ability to accept what was happening and just be?

Hours passed, days passed, friends called, visited and fed me and Howard. As time moved on, Chelsea woke more, smiled often but seemed vacant. While at home in January, she’d often question where we were, and who we were. She’d been having periods of psychosis and would say things like,“This is a bad vacation, when are we going home?” Or “This isn’t our house.” The home she’d lived in for fourteen years was now strange to her but in the hospital with nurses and doctors poking and prodding all hours of the day; she didn’t question

After several days we were presented with the information for a gastro tube procedure for Chelsea since she was unable to eat or take her medications. This is a peg and tube inserted directly into the stomach near her navel to allow for her nutritional and medication needs. All the while, thus far, Chelsea had a nasal gastric tube for all her food supplement and medication along with an IV for fluids.

The thought of the G-tube brought such sadness to me since so much of our time with friends is spent around a table somewhere. The thought of loosing this form of entertainment was emotionally strangling as it was one more thing of pleasure to be taken from her.

Chelsea has always been such a terrific eater, asking, “Is this organic?“, or “Is this healthy?“ and her favorite foods have always been big salads, fruit and steak. While I knew the G-tube would be easy for us and her eventually and that she could possibly regain her swallowing ability; I felt sick with the thought. My little girl who was so style conscience and aware of her self physically would have a tube poking through her tummy, and I wasn’t sure she’d be able to understand.

One week in the hospital already, procedure in place for today. Howard and I tired but strangely comfortable where we were. Even though Chelsea appeared to be still and resting most of the days, she began taking in her environment more and more over the weekend. One very poignant question she asked me was, “Did I die?“ I knew at that point that she was aware something big had happened to her. With tears streaming down my face, firstly that she was able to talk to me and secondly that she was so clear. I simply replied, “No darlin’ you’ve been in a long, long sleep and you are waking up and your body has been very tired. We’re in the hospital and mommy and daddy are with you.”

Over the last several days, I believe she was aware of the talk of the procedure and was beginning to get a sense of where she was and now showed signs of being afraid. She clutched our hands tightly as we waited in pre-op somewhat aware but not fully of her surroundings, but clear enough to know we were who loved her most in the world and we assured her she’d be alright and we’d be here when she awoke.

Over the next week I had become quite comfortable at my window seat/bed and met with neurologists, gastroenterologists, physical therapists, occupational therapists, nutritionists, social worker, nurse case manager and many friends. It became apparent to me that I was completely unprepared to go home with Chelsea being in such a compromised state. Previous to this hospital stay she was at least able to walk with assistance, speak her thoughts, albeit slowly, and especially eat. Today she was unable…I hate to say disabled, it is too heartbreaking and I believed with all my heart that she would regain her abilities, at least some of them. I took in the mounds of new information and tried to sort it in my head imagining how our life at home was to be. I couldn’t see being home like this; at least not yet, my mind couldn’t go there.

I was overwhelmed, exhausted and emotionally drained but mostly profoundly sad for the immobile life that lay next to me. Chelsea still had a beautiful smile for the nurses and friends who came by her bedside but clearly there was vacancy in her eyes. I expressed my fears to our friend, Christa, (nurse manager of ICU) and she asked if we’d been told about the George Mark Children’s House. We had not…as she spoke so lovingly about this incredible place, I felt as though the sun began to shine in our room that day. Please visit the George Mark Children’s House website at www.georgemark.org to be enlightened.

Howard and I took a tour the next day at the house and felt as though a lifeline had been handed to us. Not only is this state of the art and the only one of its kind facility available for Chelsea, it was available for support to us. It felt like “home“, all the amenities you’d want in you own home complete with a loving supportive family of well trained staff.

As we left our tour, I remember crying at the over whelm of our lives but feeling like we could actually leave the hospital with a plan for transition with the George Mark Children’s House there to catch us if we fell. Finally after 11 days, Chelsea was able to be discharged; and I felt at least ready at that point to leave the hospital towards our new home away from home, the George Mark Children’s House.

The next eleven days Chelsea spent at the George Mark House were truly remarkable. Chelsea, Howard and I were greeted upon arrival by her nurse, Paul, a gentle compassionate man whose hug warmed our tired, confused and overwhelmed bodies. He even had reserved several plates of dinner for us from their incredible kitchen since dinnertime had passed and we’d not yet eaten. We immediately felt at home.

We settled in that night happy to be in a more home like environment but still very compromised with Chelsea’s condition. At this point, she was getting all her food supplement and medication through her g-tube, not walking, and barely speaking. Her swallowing ability had just slightly improved but not to the point of being able to eat.

For the next several days she grew stronger, her sense of humor and personality began returning. Soon she was walking with assistance and finally thinking about food. She asked me one morning, “Doesn’t anyone eat around here, I’m starving!” I tried to explain and yet wanted to ignore her food thoughts since she technically was not allowed to eat. She pestered me so that at one point several days later, she held her own “sit in” in the kitchen and proclaimed, “I’m not leaving until someone feeds me.” Fortunately, Dr. Beech was there to supervise her first food in more than 2 weeks; a delicious pureed vegetable lasagna soup, prepared quickly and expertly by one of the incredible chefs. Her taste for food was satisfied that day and we celebrated her joy and small success. I felt she was on her way to a new normal, one that was less than she was before but dramatically better than she had been over the last several weeks.

We spent eleven days at Children’s Hospital Oakland, and eleven days at the George Mark House, it was time to go home. Chelsea was very happy where we were, her needs met, she was occupied and entertained by friendly faces but I needed to go home. Feeling somewhat comfortable with our new medical situation, I had been handling her tube feedings and meds for days now; it was time for the next step…home.

The day we left the George Mark House was bittersweet…we waited until after dinner, hugged everyone and said our goodbyes and drove home. Chelsea cried, not wanting to leave her new found friends, comfy room and an environment that had nurtured us so well. The adjustment home was not as smooth as we had hoped. It had been three weeks since she’d been in her own room, her mind and body had been lost in another dimension. She experienced several tonic-clonic seizures those first days back and slept most of the time but slowly, she returning to us…not as strong as before but we can see the spunky, funny, charming Chelsea settling in the routine of being home.

Our family has lost so much with this illness yet I try to hold onto the good in each day to allow it to help me to move to the next. It sometimes seems impossibly hard and too much to handle but then I look at Chelsea who projects so much joy that I cannot give up…she needs me…she’s my purpose.

Chelsea and other ill children seem to possess a simplicity about them that is about love and what we can learn about how to live with love. Throughout this process, I continually try to find the positive, the joy and the blessing.

One of the most prominent blessings, while it may seem strange, has been Chelsea’s hospitalization. Being away from home had not been easy but finding solace on my window bed knowing Chelsea was being loved on by our incredible group of friends who rose to the occasion by bringing food, loving energy and overwhelming comfort dispelled what I had questioned many times before, “Are we alone in this?” The answer is an overwhelming NO.

Something else to mention that has been positive energy for us has been Chelsea’s neurologist, Dr. Suzanne Davis at Children’s Hospital in Oakland. She has and continues to be a connected well informed doctor in the lafora field and has shown her heart to us by looking after Chelsea so closely and keeping Chelsea’s best interest a top priority. While some of the lafora cases have been 5-6 years in getting diagnosed, with seizures and deterioration ravaging young minds and bodies, Dr. Davis was in touch with the latest in neurological findings and has had been at the cutting edge with medication and treatment.

My stubbornness, a blessing in disguise, does help me out in unusual ways. By being adamant that I could not go home with Chelsea so compromised after our eleven days at Children’s Hospital opened the door of opportunity for us to be affiliated with the George Mark Children’s House. I don’t know if that window of opportunity would have been opened had I not been so stubborn. We feel we have an extended family within its amazing staff. Chelsea was loved, nurtured and expertly taken care of as were we and the possibility for respite is not only a godsend for me and Howard but an opportunity for Chelsea to experience this incredible house as a home away from home. The George Mark Children’s House (www.georgemark.org) while a facility for terminally ill children, is also a home filled with all that is life; an abundance of joy, love and unconditional acceptance.

The community that has formed within Chelsea’s Hope has also been a positive, joyful blessing. While we are all connected because of a tragic illness, we’ve also connected because of the love for our children and the hope for their future. When we who were once strangers began exchanging personal emails and phone calls, our worlds grew a tiny bit larger. I feel connected to the parents and their children represented on Chelsea’s Hope as well as those who have not yet sent in the children’s stories.

A not so impossible dream would be for the lafora children and their parents to assemble somewhere together to promote awareness and raise incredible amounts of research dollars. I am positive great things can happen…

With great hope,
Linda