I have a dear friend, who struggles every day with one of those lifelong heartbreaks. My friend – we’ll call her “Joy” – is one I’d consider one of the best and closest. We have walked through life together and I’d like to think that our friendship is better than the mutual everyday friendships you’d have with many acquaintances. In fact, I know it is because last night on the phone – she told me so.
Now “Joy” adopted a son approximately 5 years ago at birth. He was one of the greatest blessings to “Joy’s” family. At the time, “Joy” and her husband had 3 older children (2 graduating high school and one entering junior high). She had always hoped for another child – and now – this baby was literally dropped into her life and she was so happy. But just a few months into his life, something was wrong – terribly wrong. He began to cry often as if he was in pain. He was inconsolable, so “Joy” took him to the doctor. After many tests, baby boy was diagnosed with Sacrococcygeal teratoma (SCT) which is a teratoma (a kind of tumor) located at the base of the coccyx (tailbone).
Since then “Joy” and I have remained close. Still, I am not as close to her as I’d like, and in all honesty, it is because I feel helpless. I don’t understand this diagnosis. I don’t understand what this does to a little boy, nor do I know , or can I pretend to understand the endless nights of changing out medicines alone, spending several weeks per month in the hospital, learning sign language so that my son can communicate better with me, attempting to pay for a private nurse that I cannot afford, and the many other things I don’t even know to list here. I am helpless.
Over five years have passed, and I still feel helpless. After a phone conversation with “Joy” last night, I still hung up the phone feeling helpless. I wanted to know what it is that people can actually DO for them. Sure, I know fundraisers are always beneficial, but they died down a long time ago. After all, what child normally survives this type of diagnosis for this long. What a blessing! Those who jumped on board to support this family have long gotten busy with their lives and forgotten about the daily struggle of my friend and her family. While I know that the medical bills for this little boy are beyond anything this family can ever repay, there are more daily needs that they have – that no-one even is aware of. For instance, they have a house payment every month that they struggle to pay. I know that they have struggled to pay it every month for five years! This home and his room are all this little boy knows and he is comfortable there. I also know that “Joy” is offered 70 hours of paid nursing care for her son per week, however, she only has a 40 hour a week nurse because the company that sends the nurses doesn’t have any RN’s available for two reasons. First, they cannot keep them staffed because they cannot afford to pay them what they are worth. Second, where “Joy” lives is 35 miles from the main city and beyond the distance that most nursing staff is allowed to drive for their job.
This lack of nursing help means that between the hours between 5 P.M. and 8 A.M. “Joy” is the sole caregiver for her son. Her 2 oldest children are in college now with jobs and families of their own. Her youngest child is in high school and while he helps, he has responsibilities of his own. Her husband works full time to attempt to support the family on one income. When he comes home – he is responsible for the many things “Joy” cannot do, such as being an effective parent to their high-schooler, tending to the house, and helping with their son as needed. “Joy” spends her days by her son’s side, and spends every day attempting to make the house clean enough for him to crawl around (he has lost mobility due post surgery tailbone nerve damage). This is a huge daily chore in itself because he needs to be in clean environments so that his tubes do not get contaminated with dirt. She takes him to multiple appointments daily and meets the needs that only a mother can meet. She spends her nights attempting to sleep, but only getting minutes of sleep at a time because her son wakes hurting, or his medication pump goes off, or he needs his diaper to be changed. She doesn’t rest. She doesn’t spend time with her high-school child. She doesn’t have time to communicate or build on her marriage.
There is a potential that as you read this blog, you realize how helpless this all seems. Not only do I feel helpless, but I am. I cannot provide “Joy” with anything more than an honest friendship that can listen to her heartache and empathize with her story. Adding to my helplessness is “Joy’s” helplessness when we discuss her life mission. The heart of a woman who is drained, lonely, and never allowed to rest is kept alive by the blessed livelihood of her baby boy. Her joys are found in small and deliberate moments. Her appreciation for life is summed up in the quiet sleeping breaths of her son. Her mouth never complains, yet it fights for his very life. Her stress is buffered with small bouts of laughter and harsh sarcasm on the phone – when she attempts to make jokes to keep a smile and keep from panicking.
More than anything, I have learned so much from my friend and she continues to teach me about love and life every day. While I feel helpless as we talk into the wee hours of morning, I must admit that I am the one most blessed because “Joy” chose me for her friend and continues to choose me – as helpless as I feel.
Maybe now you know why I have called my friend “Joy” in this blog. For joy is not found in the money we have or the goals we achieve. Joy is found in the life and breath of those around us, and somehow, my friend has mastered the art of joy in what she hopes is a lifelong fight to keep her son alive.