I was ignorant of the challenges that face many people in our society born with disabilities and had no way of understanding the physical, psychological, and emotional commitment it takes to parent one of these individuals. My eyes would never have been open to the spiritual gift they are to the people God entrust them to. When I am asked how Eli is doing I never have a chance to really give an honest answer. So I stick with the same one all of the time. “He is happy.” People’s reaction show it was not the answer they were expecting to get. It is impossible to give them a true picture of how difficult a question that is to answer in a routine conversation, however, when it is asked these are the thoughts that run through my mind.

     Caring for Eli daily can be challenging task. Ashley’s day starts at five – thirty in the morning. An hour later Ephraim is dressed, fed, and usually sad that he must leave his brother behind while he attends school. I see the disappointment in his eyes as he leaves the company of his mother whom during the school year he sees very little of. He is learning a lesson we could have only partially taught him without the presence of his brother. To die to his own wants each day for the benefit of his brother, and to rejoice in the selfless love he exhibits in doing it. Matthew16:25 “For whoever wishes to save his life will lose it, but whoever loses his life for my sake will find it.” A lesson so profoundly displayed by our five year old that God uses him to call us to willingly do the same every hour of every day.

      Around seven o’clock Eli is being catheterized for the first time. This process is repeated every three hours at least five times a day depending on the amount of his fluid intake. When he tries to urinate on his own, because of the nerve damage to his spinal cord, his sphincter that helps control the flow of urine only allows him to partially empty his bladder. The remaining urine will begin to produce unhealthy forms of bacteria that when mixed with urine being produced by the kidneys can cause an infection known as a U.T.I. Urinary tract infections are very common in children with Spina – Bifida and cause a high fever. If not treated with proper antibiotics, the condition can lead to an extended stay in a hospital. Eli developed his first urinary tract infection in the summer of 2010, over a year after his birth.

     Since we have begun catheterizing, he is required to take two different types of medication by mouth. One will prevent the likely hood of an infection and the other will help to stop his bladder from continually having spasms which could lead to reflux in the kidneys and cause permanent damage to those internal organs. The latter of the two medications is to be given twice a day, once in the morning and once at night following some type of food intake; which can be rather challenging because the antibiotics cut his appetite. Eli has only weighed more than twenty pounds once in his life.

     Eli has therapy eight times a month. These sessions are either for physical therapy or occupational therapy. The physical therapy involves skills that will improve his upper body strength and eventually give him as much mobility below his waist as possible. His occupational therapy is designed to help him acquire everyday life skills like feeding himself, tying his shoe, writing his name, dressing himself etc. All skills he will need to accommodate the possibility of living his life in a wheelchair and being able to achieve personal self sufficiency and independence. Either a therapist comes to our home or he is brought to the hospital twice a month to receive treatment there. On the remaining days of the month Ashley works with him so he can achieve his best possible physical and mental capability. A speech therapist that visits our home once a month and he has benefited greatly in this area. His cognitive skills are on the same level as any other two year old. We feel extremely blessed that his mind works so well. We believe it will give him endless opportunities in life regardless of his other physical limitations.


     Eli also has to be in his “stander” twice a day. The stander is a special piece of equipment that is used to help get him erect for a period of time to get constant blood flow to his lower extremities. It also keeps his femur bone in line with his hip socket. His left leg below his knee is turned slightly inward, and this process could help to eventually straighten it out. Most babies are naturally bow legged before they begin trying to walk. The pressure from standing on their feet begin to turn them slightly outward, giving them the ability to stand completely erect before beginning to walk. Because Eli does not have the strength to hold himself up, the stander allows him that capability. He can move forward or backward on his own and has become quite skilled at navigating it around the house and often uses it to chase Ephraim around.

     Eli has seen more doctors in the first year of his life than I have in my entire life. A neurologist who monitors his shunt that regulates his hydrocephalus, a cardiologist who monitored two small holes in his heart until they eventually closed, and now examines an enlarged aortic valve. His urologist who will help him deal with issues he will face for the rest of his life concerning his bladder, continence, and bowel functions. An orthopedic who will eventually find some suitable device to help him walk or the right wheelchair necessary for him while continuing to work closely with his therapist in their efforts to strengthen his lower body. Finally, a pediatrician who will be his doctor to oversee and care for him during the numerous times he contracts illnesses or common colds that most healthy children encounter throughout their childhood.

     Ashley works two twelve hour shifts every weekend and one eight hour shift during the week. Our parents are only a phone call away and each play a major role in helping me care for the boys on the weekend. When Ashley and I want to have time together to maintain and strengthen our marriage our parents are always willing to help us have that opportunity. God always provides. Despite all of the sacrifice that is required by so many to make this situation work, our marriage is stronger than it has ever been and I know we have found a peace and happiness through all of this that we never had before.

     This is not the kind of answer you can give to someone in passing when that question is asked in passing conversation. However, these are thoughts that run through my mind when I re-examine the dynamics that surround this situation. God’s challenge to us to love unconditionally and continually die to ourselves through that love for Eli brings us closer to Jesus Christ as a family each day.