a mother's love

From yesterday, April 6 (i'm sorry - internet excuses again!)

Othathali went to surgery this morning. Thankfully the premed worked and she was knocked out for the majority of the wait outside the theatre. The surgery before hers ended up taking a long time, so we waited in the hallway for about an hour. Othathali’s mom was there, so I just sat with her and talked while Othathali slept. We had plenty of time to talk, so her mother told me all about Othathali’s story. Othathali was burned by fire when she was about 3 months old. She is now almost 6 or 7. She spent the majority of her first year of life in the hospital, undergoing numerous surgeries and painful procedures to save her life. Due to the social situation Othathali came from, she was not able to go home with her parents. One of the women working in the cafeteria heard Othathali’s story and ended up adopting her. Her mother told me about the way she felt God had been preparing her and her family for Othathali’s presence in their lives and that her addition to their family was truly orchestrated by God.

Othathali’s mom also told me about the role she plays in advocating for her child – both in and outside of the hospital. Children can be cruel to those different than them anywhere in the world, but it seems like physical disfigurement takes on a greater social stigma here. Tolerance is not a key topic in children’s education, so burn survivors often have a very difficult transition home. We’ve even heard of children being shunned by their families and communities following burns. Othathali’s mother told me how she had gone to the schools and spoken with the parents (spoken – threatened…it’s all the same around here. ☺). She also told all the children in the neighborhood that she had gone to the police station and filed an open case, so that any child caught making fun of or hurting Othathli would immediately be prosecuted and their parents would go to jail. I’m not suggesting this is the newest model we should use for school reentry, but it does illustrate what a mother will do to protect her child from emotional pain. She is doing the best she can what she has in order to protect her child.

Othathali also discussed her role as an advocate for her daughter in the hospital. She is constantly asking questions and wanting to be at the forefront of her daughters care. She told me that she worries that the doctors think she is annoying or bothersome because she always needs to know what is going on and feel in control. I encouraged her in taking leadership of her child’s care, reminding her that she is the expert on Othathali. I said I wished there were more parents able to take on the role as advocate for their child. I think that is often a difficult role for parents to navigate. We as medical personnel need to take it upon ourselves to encourage parents in that role and give them the tools necessary to achieve success as the expert in their child’s care. Parents should never be made to feel bothersome because they are seeking information or wanting to take part in their child’s care. True family centered care recognizes the family as the constant in that child’s life. Doctors come and go with different ideas and different messages. The one consistent member of the team is the family and child and they are therefore the experts.

After our talk Othathali’s mother started to cry. She wouldn’t look at me because crying is not openly displayed here. But I could see her wipe her tears. I put my hand on her back and encouraged her in her role as mother. She told me she was usually so strong that people didn’t realize how difficult it was for her to watch her daughter continually go in and out of surgeries. She told me how her husband had died a year ago and that he was usually the one that accompanied Othathli to surgery. It had been over a year since Othathli’s last surgery (not counting the one a few days ago). It seems like so much for one person to handle, but she handles it with such strength and courage.

We accompanied Othathli to the theatre. She slept for most of the time, waking occasionally but calming with reassurance from her mother and I. The environment was so soothing and the sedation went very smoothly. I accompanied Othathli’s mother back into the hall where she gave me a hug and thanked me for listening. So often that’s the best thing I can do.

There is another mother on our ward that displays this strength and courage. Her son has been in admitted on the burn unit for over 3 months. She has been with him almost every moment of that three months. Every now and then she goes home to care for her other two children. She feels torn between her child in the hospital and her children at home. She sleeps on a mattress by her child’s bed that they bring her at night. She is so patient and kind and often looks after the other children who do not have parents at the hospital. Her son has some horrible itching problems. He scratches and scratches at his wounds. The medications don’t help much, so he is often miserably uncomfortable. His hands have been bandaged to keep him from digging through his dressings. His mother remains so patient as she tries to comfort him and support him. She, too displays so much strength and love.

The display of love and strength by these mothers is not unique to Africa. I can think of many mothers on my unit at home who have endured the stress of a difficult medical diagnosis, who battle with the daily struggles of long term hospitalization, who balance caring for their well and hospitalized children, who try to keep it together when they feel like the hospital is making them crazy. I don’t know how they do it. I have the benefit of leaving every day…of seeking renewal outside of the hospital walls. The hospital doesn't have to consume my life, but when you have a child in the hospital - it so quickly becomes your life. Many of these mothers relocate their lives to a small hospital room and continue to manage their daily responsibilities from afar. It truly is amazing. They truly are an inspiration. The least we can do is offer a listening ear, an understanding hug, a brief respite, an encouraging word, and always a respectful response to their expertise as the mother of their child.

In the last few days I have heard from a number of friends about struggles they are experiencing at home. It makes my heart heavy not to be there to provide the comfort that I so want to give. As I was thinking about my friends, I began to think about these mothers. There are times when the things they must do for their children causes them discomfort and even pain. The children become very upset and don’t understand why their mother’s would keep them from the comfort they seek. For example, Mark’s mom must battle with him daily to keep him from scratching his wounds. He cries and hits her, not understanding why she doesn’t assist him in the comfort that he seeks. But his mother knows that in order for his wounds to heal, and in the long term for him to find the comfort he seeks, she must not let him scratch. There are times she has to scold him or even swat his hands to help him understand the importance of following her commands. I think that often this same struggle occurs between our Heavenly Father and us. We feel like we know the answer to the comfort we seek. We desire the immediate relief from the pain we feel. But he says – wait. I know what is best for you. Wait…and while I know the pain you feel now seems unbearable, in order for you to heal, you must endure this for a while and the healing that will come will be a far greater blessing the temporary relief you seek. So for my friends who seek comfort – I pray that you will find the strength to endure this trial, that the blessing that comes will not only strengthen you, but will provide an even greater healing than you can imagine!

My afternoon was spent trying to share love with the kids who do not have mothers or whose mothers are unable to be with them during their hospitalization. At one point I had two large children (7 and 8) sitting on my lap and one standing between my legs. They were all participating in different activities, but just wanted to be close. The closeness got a little too much to handle at one point. ☺ The little girl on my lap accidentally hit me in the face. She felt so sad and started rubbing her hands all over my face trying to say she was sorry. The little boy on my lap must have been feeling protective and didn’t like the way she was touching me, so he hit her. She cried. He cried. They all sat there trying to get their emotions under control while they little girl standing by me stared in confusion and another boy on his bed just laughed. It was actually probably a very funny picture. I wish you could have seen it. We took a little break after that and everyone returned to their own areas for a little bit of personal space time. ☺ There are just some times when it’s hard to see just how these kids are craving love in their lives. And it’s hard to know that I have to walk away from it every night…and that soon I will be walking away from it for good.

All this talk of mothers makes me miss mine immensely. I love you mom! Thank you for filling my life with so much love!

I hope you dads aren’t filling left out in all my talk of moms. Your role is just as important, it’s just that moms were the center of my interactions today. Dad – I love you, too! You are definitely my biggest supporter in the entire world! I can’t help but picture you when I play with these kids. You would be so excited and they would love you so much!! ☺