As the oldest of 18 children, my mother is always really busy. From Doctors appointments to Basketball games, she is always busy. As a result, she lives by her calendar where she rights everything down. She is meticulous with names, dates, times and locations. If you asked my mother what she did 5 years ago, she might need to search but she would inevitably be able to tell who, what, when, where and why for that day. My mother does this for memory and protection. I have been present during times she forgot information, she was able to refer to her handy dandy calendar for information. I have also been present during the times someone challenged her, again she referred to her faithful notebook for information. It has been both Saint and Savior in her times of need.
As I grew in age, the lesson of write it down became more important to me. However, I was not the best student. Like most of us, I would forget essential information and when it was time to recall the information, it was not available. This was particularly detrimental when I got married to my Warrior. I was wide eyed when I got married. I did not fully understand what it meant to care for my Warrior. Even though, I was informed by my Mother in Law, I did not grasp the full magnitude of caregiving. The information that I received from her was basic because information about Sickle Cell is very basic and there are very few doctors are willing to help you understand. Nevertheless, I entered this journey with minimal information and because I was not the best student about writing it down I learned a lot by trial and error.
Trial and error is a harsh teacher; it involves many long nights and confused days. Confused as I was, I began to realize that I could not trust anyone with my Warriors care. One time in particular, we had to go to a hospital different than usual. Unfortunately, I depended on the doctors to be well versed in my husband’s records. Much to my surprise, they were not! In addition to that, I noticed they had what I now know to be the “God complex.” They were the doctor, he was the patient, and I was the pointless caregiver. In his eyes, we knew nothing! It seemed that they thought my Warrior was addicted to drugs (I will discuss drug seeking at a later time), and I was his enabler. Oh joy, what a fantastic visit to the hospital that was! (Sarcasm drip, drip) Needless to say, as a new caregiver I spent nights battling with the Nurse. The Doctor was never to be found, he was sending messages through the Nurse. From time to time, I would gain enough courage to tell her to go back and ask for more medication. This back and forth happened for a while until in a moment of desperation, I called my mommy.
First, I was angry. I began telling her the tales of how my husband was in pain all night long and no one was listening to me. I explained how my husband could not talk, walk and was not coherent. Then, the water works began as I told her the entire story again. Occasionally, she would reply “I know baby, it is going to be alright.” I would start crying all over again because I felt inadequate for the job at hand. I felt like a child needing my mommy to swoop in and save the day from the big bad wolf of health care. Finally, when I was silent, yet still sniffling, she replied, “Did you write it down?” Write what down? There was no time between crying and begging and pleading, repeat that again and again. When did I have time to write it down because when I was not crying, pleading and begging, I was physically and emotionally tired, so I slept. Of course, I never said that to my mom for fear of getting verbally “knocked the heck out.” I simply replied “huh.” She replied again “Did you write it down, did you get names, dates and times? Did you write it down baby?”
She explained to me when you write things down you remember better for the next time and it make others stand at attention.
“Stand at attention” that was what I needed. I needed them to pay attention, to Stand at attention! If you are familiar with the military, soldiers stand at attention when someone of authority is coming or is already present in the room. It is a posture that denotes respect. Also, “Standing at attention” lets the Authority figure know that everyone present in the room is ready to listen. If you are not at attention, there are consequences! There it was, exactly what I needed, to write it down to call attention to what I was saying. I desperately needed the Doctors and the Nurses to know that I was an authority on care for my husband. My mom gave me the ammo! I was ready to make them stand at attention. From that point forward, I attempted to write everything down. Some days were better than others, but I did not depend on anyone to know more about my husband’s care than me because I had it written down.
Recently, my husband had to go into the hospital because of an infection through his port. When anyone entered the room, I asked for their name and position and I wrote it down. I wrote down the time and reason they were in the room. Also, I asked about the treatment they were proposing and how it would affect my Warrior. I explained that I understood that they do not always get appreciation for the good things they do and I wanted to give a good report. I noticed that his care was better when I wrote everything down. Soon, I did not have to ask many questions, I was automatically told and the word got around! Also, I realized it was not enough for me to tell them I was an authority; I had to back it up with writing it down and be willing to report good and bad experiences!
Now, I say “ATTENTION” every time I show up to the ER, Doctors appointments or anything involving my Warrior by taking notes during the meeting. I need everyone involved to pay attention to my knowledge. I cannot afford to depend on the knowledge of the Doctors as my only resource. I must have detailed notes on how my husband’s care used to be and a plan of how I want it to continue. In addition, part of my notes must include a personal copy of his medical records. Unfortunately, Doctors do not have the time to read everything in his file but I do, so I can be an excellent expert. I don’t have to carry them around but they must be handy.
As a final point, I am so happy my mother did not baby me that day. She showed me how to fight. She wasn’t superwoman just a super mom by giving me the tools to be a better warrior. As stated, I was not the best student and I did not learn right away. There were moments when I forgot to right key information down concerning my Warrior but I am getting more efficient as time goes on. The days of helplessness have decreased and the days of victory have increased. Victory comes when I say “ATTENTION, AUTHORITY ON DECK!” as I write it down!
Habbakuk 2:2 (The Message Bible)
And then GOD answered: “Write this. Write what you see. Write it out in big block letters so that it can be read on the run. This vision-message is a witness pointing to what’s coming. It aches for the comingit can hardly wait! And it doesn’t lie. If it seems slow in coming, wait. It’s on its way. It will come right on time!