Disease and Life Threatening Illnesses
Disease or a life threatening illness is something that can strike a family cold! One of my nieces was born with a metabolic disorder that only one in a million children is born with across the world! Beginning with a birth of prematurity, we had no idea of what was about to be the beginning of a very stressful battle.
A 6 year old sister’s prospective:
“Jesus has angels, and Alie is my special one!” Alisa was only 6 years old; her Father was deployed serving in Iraq for another 6 more months when he was American Red Crossed home for the emergency birth surgery where her Mother’s life was endangered. Being 6 years old and attempting to comprehend the loss of the child growing within her mother as well as also her mother was enough to cause misunderstandings! After the birth it was a joy filled celebration that the two were safe. Alie was released from the hospital it was months of struggles and continual fussiness that caused Alisa to have many headaches and stress filled evenings. The battles of the wrong formulas, sleeping patterns, reflux, etc. that were the beginning signs of Alie’s disorder began to affect the children within the hou
sehold as well as the parents relationship (each undetected until the diagnosis of connecting the dots in January/February). After her parents received the news of this metabolic disorder, the struggle of how to communicate this to a 6 year old. Seeking professional assistance dealing with grief (for a military family is both easily accessed as well as so broad that it was very confusing) the family decided on their approach. Alie lived much longer than the doctors diagnosed (18 months of age actually!) and during this time Alisa grew in favor with Alie. Looking forward to her turn to hold and feed her, her turn to show her little sister she could read, and the normal milestones an older sibling is excited for. During Alie’s last days, Alisa’s house was continually filled with family, hospice, clergymen, friends, and supporting military personnel that it became so overwhelming. This was reality. Alie passed away in their home, and each person was given a few moments to hold her and say something before the body was taken away. “You are my special angel, thank you for protecting me now” There was a formal service, with a casket, and we were each able to write something on a piece of paper to be left with Alie. After the service the body was cremated and the family took a trip to Hawaii (the place she was conceived) to scatter some of the ashes. For Alisa, she wrote her cares, concerns, and needs on a piece of paper (some her Mom assisted in writing and some she drew a picture for privacy) to help keep Alie safe and to be her new Angel in heaven over top of her. For a now 7 year old, this is how she knows Alie still remembers her and protects her. Alisa received a lot of love and support from family, professional assistance, and anything her parents could do to help her understand and live on. Just recently, Alisa turned 15 years of age and has begun to struggle with the loss again. Each person handles the illness and loss in many different forms, diseases and a life threatening illness is real. It doesn’t just resonate during the life but the struggles later on and how they are handled are just as meaningful.
The Aunt’s prospective:
It was late January/early February and I was in my junior year of college, intentions to spend the entire summer student teaching overseas in Mali, Africa, when I received the news that Alie would only have a few more months to live. At this point Alie was only but 3 almost 4 months of age, I was dumbfounded! Alie was grandchild #20 for our side of the family and each child was healthy with milestone development, upon hearing this I was at a loss. What is a person to do? How does a sister support her loved ones when she doesn’t even comprehend birthing a child much less dealing with the news of losing a child? I began to read text books, articles, anything I could get my hands on for support as well as speaking with professors weekly on coping and dealing with #1 the loss myself, #2 how to support the circumstance for a loved one, and #3 as a future educator my role. Nothing a person can read or study can prepare you for the long journey our family was about to enface. Religion or an entrustment in a God that I have believed in since a young child wasn’t even enough to help me get through this. C.S. Lewis wrote a book “A Grief Observed” where he wrote of his anger toward God due to the loss of his wife. It was while reading this that I accepted; it is okay to be mad at the situation. It’s okay to be mad, even though I am a devoted Christian, at the circumstance God has placed our family in . . . but what will I do about it? Misery loves company, and C.S. Lewis was a great company for me during this time but also a great encouragement to realize I have to move on from it. A life threatening illness or disease is not something that anyone wishes upon another! I spent the summer home in Virginia, and most days at Quantico base holding the baby and growing a bond with her that was unbelievable. Having been told we would only have but a few more months with her at the beginning of the year, each day felt like Christmas! Fall semester came, and I debated whether to attend full time schooling in Pennsylvania or remain at home where I felt not only I needed to be but also my family needed me to be. After much pushing and support I returned to Valley Forge but drove home every Friday morning for the weekend. That semester was excruciating for me! Receiving phone calls that “she won’t make it through the night”, I would drive to be with the family. Upon her passing, while giving her eulogy, I realized this disease was something that not only overtook my newborn niece but our entire family. We were all affected in some form by this and in the same manner we were forced to unite together and find a way that worked for our massive amounts of people to support and encourage one another each day. It’s been 7 years since her passing; she is thought of daily and remembered for her strength!
Disease in Guatemala
I have traveled the world pretty extensively, through private, mission, and leisure trips one thing that tends to stand out is the poverty and disease infestation. I traveled to Guatemala in 2006, and during my stay we had the privilege of working with a government appointed official for child care center improvements, assisting street kids, and disabled. This official brought us to many centers that here in the states would be shut down immediately if an official of any kind would step foot in! In one facility, I still have the picture engrained in my head; there were children that had many different diseases (none diagnosed for lack of health care funds). These children were outcasts and were basically living within the facility as an orphanage because their parents would leave them in locations in neighboring towns as they didn’t have the funds to care for them and needed their funds to be used for the healthy children and persons within their households. The difference in American standards for assisting those with diseases or life threatening illnesses is leaps and bounds ahead of most countries in this world! It was hard not to think of what illnesses or diseases these children were condemned to (and even harder as an educator to be within the same facility as them with no materials for protection but gloves). Each time I travel to another country, doing work of this kind, I continually am reminded of how blessed we are here in the states for the security and assistance we are provided with. These diseases some of the children are sentenced to are caused by improper birthing procedures, lack of nutrition, misunderstanding appropriate health care needs, and some birth defects. No one person can change the world or supply the answers in how to repair these problems; but I will continually travel and assist in educating parents around the world in the resources available to them and how to get in contact with them!
Lewis, C.S. (1961). A Grief Observed. London, England: Farber.
www.usometrodc.org – supplies assistance to military families in many forms
