Loving and Losing A Child

When I lost my Sarah to ANE in 2014, it was not the first time I had “lost” my child. Let me explain in very non-medical terms. ANE is an acute phase of Necrotizing Encephalopathy, where a common virus triggers a response and the body literally attacks the brain. The affected part of the brain literally “dies” in the sense that these cells “necrotize”. The child will typically go into a comatose state, and even upon “recovery” will have noticeable physical, intellectual, or emotional changes – depending upon the severity and area that was affected. Sarah had 4 episodes during her short life; each one causing her to be drastically different than she had been prior.

Sarah had been born a healthy, baby who met her all her milestones early, and had a sunny personality and zest for life. Her nickname at Daycare was “the mayor”, because she would toddle around with her hand extended inviting each person she came across to shake hands. Her mantra was “meet me, I’m Sarah Andrews”. It was really quite adorable to her father and I J and she was always the “life of the party” even as a baby – definitely an old soul.

When Sarah was 13 months old, she had her first episode, though she was misdiagnosed at that time with Meningitis. She was only sick for about a week, but when she gained consciousness she had changes in her gait. Since she had only been walking for 2 months, the after-effects didn’t worry me too much; though she no longer ran as quickly as she had or threw a baseball with her Dad. She still gave us glimpses of the “old Sarah”, and at that age, it’s hard to tell; but we knew she was “different” than she had been. My baby who had seemed invulnerable, whom Daddy had been grooming to be his little baseball player (she could already throw a ball at a year old); and had never given me a minute’s worry, now seemed delicate and fragile.

At 23 months old, the same set of circumstances happened, except that this time, the episode lasted for 4 weeks, she needed intubation and a feeding tube. When she finally left PICU, she needed intense physical and speech therapy for about 3 weeks. When she came home, she was in a little walker, and it was obvious that she had regressed a lot in terms of speech. Also she was constantly miserable, crying and waving away something from her face that no one else could see. We saw countless doctors and therapists and she spent far more time in Dr’s offices and hospitals than any child should have to at that age. One of my memories of that time, was taking her to Childrens for bloodwork, and assuming that she would cry and be upset; the nurse and phlebotomist were shocked at her reaction. Her little face was red and her cheeks puffed out in indignation, while only one little tear streaming down her cheek betrayed her fear. When we walked out of the office however, she turned her little yellow walker around, pointed her index finger at the phlebotomist, and shouted in her high pitched little girl voice “You know what? That Hurt!”, then sped out of the waiting room. My baby had become a warrior.  Despite all this, even though she rarely spoke anymore, she became a lego master. What she lacked in speech, she seemed to make up for in her ability to do puzzles and build things with lego blocks.

At 3.5 years old, she had her 3rd episode with ANE, and this time we really thought we would lose her. She was in ICU for 2 months and In-patient PT, OT, Speech for 3 months. The after-effects were a G-Tube for feeding and hydration, very limited speech, a wheelchair, and a lot of medications for her dystonia and the painful tone in her feet and hands, She was no longer able to hold a crayon or play with her beloved lego blocks.  She was no longer speaking or even able to hold her head up on her own. We were suddenly a “special needs” family complete with the minivan for the wheelchair and the handicap tag. Well, one thing that she still retained – which has always been her most notable trait;  was her love of people…kids, adults, old and young , everyone was her friend. She still had the most charming smile and way of leaning in and stretching out her arms to show that she wanted a hug. She was still my little beauty, and I was still so proud of her strength, courage, and inner and outer beauty. Perfect strangers in elevators and waiting rooms would thank me for sharing her space with them. She still had that radiance that was like a magnet – her body just didn’t want to cooperate.

Thanks to her persistence and inner strength, she taught herself to sit up, crawl, use a walker and finally walk short distances, she was able to communicate verbally even though she had limited control over her tongue. She eventually learned to swallow well enough to eat pureed food, though she aspirated liquids and needed the gtube for hydration. Although her fine motor skills never really improved significantly, she did learn to use a larger size crayon and chalk to allow herself to draw, memorized and repeated the books I read to her, and participated in every adapted activity I could find for her – horseback riding (oh how she adored ponies and horses), buddy baseball (Thanks Miracle League of AZ), Sunday School (Highlands church in Scottsdale with it’s wonderful “In His Image” program), and many many more. Life was good – different than what some might envision as a perfect childhood – but to us it was blissful. I couldn’t have imagined a happier or more loving child, and had no thought one way or the other when her teachers evaluated her at a 3 year old level in terms of her IQ. She was perfect in every imaginable way! My biggest concern in those years when she was healthy from 4 to 12 years old was in regards to what would happen to her when I was gone. It never occurred to me that she would get sick again.

Then BOOM, at 12 years old, she came home from school before Memorial Day weekend with what appeared to be a cold. By Saturday I had cancelled our weekend plans and had a Pediatrican appointment booked for Monday. She hadn’t had so much as a cold since she was 4 years old, so another episode of ANE was the furthest thing from my thoughts, but on the way to the Doctor’s office, I decided to just make a detour to the ER. Something in the way that she was so quiet and listless made me think back to the times at 1,2 and 3 years old when she went from a cold to a coma in minutes. When we arrived at the hospital, I was just getting her out of her car seat when she started having a seizure. A woman nearby ran to the ER door and called for someone to bring a wheelchair. In a matter of minutes we were in Triage, she had stopped breathing, and was being intubated! During this admission she had to eventually have a tracheostomy and ventilator because after about a month she was still not breathing on her own. She also had a new Gtube inserted and required round the clock monitoring at PICU. After several months she transferred to a pediatric nursing facility, but was never medically stable enough to leave again. She remained like this for 2 full years until she finally succumbed to pneumonia.

During all her hospitalizations and rehab stays, people were always kind enough to let me sleep in her bed, shower there, and commute to work– so that I spent as little time as possible away from her. I am thankful for all the kind people I have met over the years, and for the blessing of this little girl in my life. Those 14 years are the ones I hold onto.. I have little memory of the person I was before – nor any idea of who I am really beyond “Sarah’s Mom”, but I know that  her life was a life well lived, and neither of us has any regrets.  In my upstairs hallway, I have each of her annual day care and school portraits hanging on the wall in chronological order, and because each age is so different, and I remember her – not as she was at the end, but as she was in each of her various phases; I call them “My girls”. When I leave in the morning, I kiss each one and say ‘Have a great day girls – mommy has to go to work now”, and when I come home at night I call out “How are my girls today?”. Somehow when I think of her in the plural, I feel her presence more.