It’s November 3, 1997. I had just returned from an evening class to hear my husband say that Maria, our 6-month-old daughter, had not been moving her arms and legs during her last diaper change. Prior to going to class, I had noticed that Maria had spit up and was rather fussy that afternoon, which at the time I had just thought was due to teething. Hearing these new developments, we called the pediatrician and were advised to go to the Children’s Hospital. Once we arrived in the emergency room around 8 pm, Morgan and I were separated and questioned because our story of her symptoms was so vague. I think they thought we hurt her.
We were fortunate, however, that the ER staff consulted a neurologist, who then requested for an MRI to be done. By 2 am, the MRI was complete and we were informed about Transverse Myelitis. The cause of the attack was unknown as Maria had been completely healthy; however, she did have general anesthesia with a caudal block six weeks earlier for double inguinal hernia repair. Given the diagnosis, the next three weeks Maria stayed in intensive care, receiving high doses of intravenous steroids and immunoglobulins. At the time, a social worker explained to us that it was perfectly normal to go through the six steps of grieving, which was helpful for me to know and recognize. Our hopes and dreams for our healthy daughter and the life ahead of her had drastically changed.
When it was time to bring Maria home, she had only once randomly moved her right arm and required oxygen. Within a week, she started physical and occupational therapy three times a week at the Children’s Therapy Center, which was fortunately just ten minutes from our home.
Over the last 18.5 years, Maria has participated in a wide array of outpatient and home therapies, including aquatic therapy, therapeutic horseback riding, and riding a functional electric stimulation (FES) bike. Through these therapies, Maria has gained function and strength in her upper extremities, enabling her to independently maneuver a manual wheelchair with e-motion wheels. Her hand function has improved, but it is still weak. In terms of balance, she has decent trunk control thanks to a 13-hour spinal fusion and the insertion of a baclofen pump, which limits the impact of her involuntary leg spasms. For the past couple of years, Maria has received botox to help relax her neurogenic bladder. Even with all of these medically related obstacles, from Maria’s perspective, the greatest frustration has always been feeling accepted by peers and overcoming the limitations they place on her. People are quick to see the chair and not always the person in it. She simply has wanted to be treated like everyone else.
I believe we as parents struggled more emotionally over the years because Maria was always content with her life. At the age of 13, Maria was asked, “If you could change anything in your life what would it be?” Her answer was simply “nothing, I am happy and content with who I am.” Today her answer to that question remains the same in regards to living with TM. Living as a quadriplegic is all she knows and she accepts gracefully.
Our family has been and is continuously blessed by the support and services of SRNA. We are fortunate to have attended symposiums and family camps. The folks that we have met over the years have become our extended family. Our trust and faith in God has carried us through each and every day. God is good. My hope is in God and his plan and his will for Maria’s future. This past year, Maria has successfully lived independently on a college campus just like any other young adult. Keep your hope alive and strong!
Pamela Hoge
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