Everyone in Emma’s family loves to read. At five years old, Emma’s natural curiosity and wonder sparked this bright Kindergartener’s interest in fantasy favorites, The Hobbit and Harry Potter.
While reading with her mom one night in September, Emma complained of an earache. Making an appointment for her daughter to be seen, the doctor thought it was an ear infection. The prescribed drops didn’t seem to help; Emma’s pain persisted. Days turned into weeks with Emma reporting her ear was still hurting – only now, it was accompanied by a high fever and neck ache.
Looking for relief, Emma’s parents took her to the emergency room three times. Recommendations included Tylenol for headache, fever and neck pain, with Zofran for Emma’s nausea. Now into October, Emma was complaining; the pain was intolerable. Soon, she became unresponsive. Calling 911, an ambulance came, taking Emma to the ER. This time, she was admitted. Within 24 hours, a spinal tap revealed this young girl had contracted bacterial meningitis.
Once Emma was hospitalized, her mom, Heather, dad, Kyle and brother Jeffery came to stay at our Ronald McDonald House. Time and again, they’ve expressed how thankful they were to be in such a loving, safe place, just steps away from their Emma.
Because meningitis lives in the cerebral spinal fluid, creating hydrocephalus (excessive accumulation of fluid in the brain) doctors performed an emergency craniectomy (removing part of the skull, allowing her swelling brain room to expand). Sadly, Emma’s condition worsened. She had a stroke (the first of many) and began having seizures. The impact has left Emma presenting as a two-month-old. She is unable to eat, swallow, walk or speak .
There’s NO PLACE ELSE Emma’s family would have been over the next few months than by Emma’s side. With their daughter’s life hanging in the balance, they knew they needed to be with her – at her bedside – to monitor her condition, talk with the doctors, understand (and follow)the medical protocols and spend time together, talking with her and reading to her. Heather and Kyle’s unwavering hope for Emma’s full recovery has remained a constant.
January came and Emma was released from the hospital. To care for their daughter’s needs at home, Kyle, an Army veteran, quit his full time job and completed his certified nurse’s assistant (CNA) course to be Emma’s primary caregiver. It was a natural fit for Kyle, who had assisted medics while serving in the Army. Heather said, “Kyle’s always been a good dad. I’m not at all surprised by his abilities in caring for Emma.” And care for her, he does. In two hours’ time, Kyle fed Emma through her G-Tube, administered medication, changed her when needed and talked soothingly to his daughter while patting her head to calm her. To assist, Kyle asked “Dr. Bubba” (two-year-old brother Jeffery) for help. Jeffery moved lovingly to his sister, patting her while saying, “It’s all right, Emma. I’m here.” He smiled a genuine smile at her and then went back to eating his sandwich.
The toll Emma’s disease and illness have brought to this small family is evident. Life changed so suddenly and dramatically. Pulling around the clock care is difficult. Kyle hasn’t yet cried. “Some days are better than others. There simply isn’t time for me to break down.” he said. Heather added, “Seeing Emma’s things and remembering who she was just a few months ago, is unhinging.” It has been helpful for Heather to sit down and lose it for a few minutes. Then, she gets up, blows her nose and goes back to work. “Emma and Jeffery need us to be strong for them.” she said. Even the family’s dogs, Tuck and Eli have pitched in, snuggling up with their Emma, being a comfort when she’s struggling most.
Heather said, “Staying at the Ronald McDonald House meant a lot to us. We didn’t have to worry about getting from there to here; we didn’t have to worry about cooping Jeff up in a hospital room.” She paused, trying to find the right words. “I’m not quite sure how to put this, but it was like staying at your grandparent’s house for the holidays. Everything was so nice and clean and taken care of. You know it’s not really your house, but yet it feels so much like home.” she added.
Our House did indeed become their “home for the holidays” with costumes and candy for Jeffery on Halloween, a traditional Thanksgiving meal with all the trimmings and Santa, parties, gifts and a Christmas Store for their family over Christmas. New Year’s was a time of reflection, renewed beginnings and hope.
“Honestly, staying with you was a godsend. It gave me a place where I could lay my head down without worrying about the minor details of life,” said Kyle. “Little things weren’t nearly as pressing.” Touching Emma’s leg he continued, “Staying with you let me focus on the big things – the most important things.”
Their family loves deeply. Holding on to as much normalcy as possible, our staff was surprised by a “Santa sighting” late on Christmas Eve. It turned out to be Kyle, (donning a complete Santa suit) returning from a visit with his girl, wishing her a Merry Christmas.
Heather said, “My grandpa used to say ‘God shows himself to you in whatever ways you need it.’ We definitely need it now.” Emma’s long-term prognosis is in the wait and see category. Because of her age and the brain’s ability to adapt and heal, her family holds out hope for a full recovery as Emma continues to be seen by a team of professionals who are providing the best care possible.
In the meantime, this little family continues to snuggle up, turning a page and reading Harry Potter aloud. Kyle and Heather aren’t sure if Emma can hear or comprehend – but, just in case, they’ll keep doing what they know their little girl loves.