Sunday, July 19, 2009

After The Journey: Part Two:

Dear friends, prior to the walk, there were several individuals in my heart and thoughts who obviously stayed with me in the journey. I introduced you to George who I most likely will talk about in other blogs to come. Today, I want to introduce you to two special people I encountered just before I embarked on the walk. For many of you in the walk with me--whether through thoughts and prayer or beside me as we journeyed, you will understand places where the inspiration comes from. Some encounters do not leave us the same, some encounters compel us to hold our placards or just walk. In addition to so many others, these two are some of the reasons we walked--one does not forget...Susan: The 19year old mother of...well, a cousins child, two young sisters, two young brothers, plus one! Could this be the beginning of her 20 years?
I first meet Susan in the Hope ward office, I am sitting in Helen's chair whilst she is on holiday. Helen is a VSO volunteer who works with Hope ward, she too walked with me. The meeting--of Susan--happens by coincidence--it is not Susan who needs help from Hope ward: it is her little sister Kevin Akiror. Kevin is about 6-7 years old and has a very severe and rare form of cancer (Angio Sarcoma Xpigmentosa). A well wisher had seen the child in a village in Soroti (Eastern Uganda) and had brought her to the cancer institute at Mulago Regional Referral Hospital. Several attempts to remove tumors from her face and head had been unsuccessful and after months of visits there was still no solution to her problem. Akiror was then brought to Hope ward to meet Dr. Helena Nam (Oncologist Hope ward). Helena is another doctor who says " We don't know what the outcome will be with this form of cancer and in a child, but at least we can try." "Try" is a word I am hearing a lot at Hope ward and I am beginning to love it. "Try" means, lets hope a little!
On first meeting Akiror, it is impossible to not be shocked...her face is lost and in its place are multiple large nodular lesions/tumors. This is what I see when I first look at her. This is what everybody sees. I know her eyes are there but one has to look hard to see them...one has to look past the obtrusive lesions. She tries to peak and see others through whatever little space is left. I look at her because I know she is looking at me and even though it takes me a while to finally make eye contact, I know she sees me. I extend my hands towards her..as if to say I see you too and I am not afraid of what I see. When we are face to face, and I finally look into her eyes, I note that they are bright red, the mucous membrane severely damaged and irritated from the cancer. Most people would be very uncomfortable looking at her for long. Her disfigurement makes people uncomfortable; it makes me uncomfortable. She seems to be aware of the effect she has on others but cannot help the way she feels or appears or smells. The open lesions give off an offensive smell...I note that too.
I continue to regard her with my arms extended, I try to invite her into them...she remains rooted to the spot. She has no clue what language I am speaking...I note that too. She stands in the room a presence that cannot be ignored, and yet she is a child lost in her tumor, in her disease...I process this as well. She assess me and the room and Jemima--the Hope ward coordinator who is trying to ascertain with Doctor Helena whether we should admit Akiror or not--and eventually finds the rotating chair on which I am sitting, fascinating. I immediately encourage her to sit in it, but she just peers as me. I cannot read her face and there is little left of her eyes to communicate any other kind of emotion but sadness...even then I know is wondering "What the heck is this woman talking about and how come this chair moves?" She does not understand my attempt at Luganda, English, and a little bit of Swahili. Eventually, a nurse calls her sister.
I expect to see a much older person when finally, and to my surprise, another young lady enters the room. She cannot be older than 15, I think, and as soon as she enters the room, I stop for a second from engaging Akiror to contemplate the situation. She is too young to be the caregiver, I continue my thinking, surely she is not the one responsible for this little girl? My questions are answered without being verbally asked. In the meant time, Susan instructs Akiror to get in the chair; in fact she helps her into it as I explain the mechanics of the chair while Susan translates. Once Akiror is seated, the sister gives the chair a firm push and Akiror seems to light up with each spin...I cannot tell whether she is laughing and I am sad for that...
The lady (well wisher) who brought the two to Hope ward, as if to answer my unasked questions, tells me that the two girls are part of a family of seven (one other girl, two boys, a grandmother, and a cousin's one year old child who she calls 'Susan's' Child). She tells me that both parents were massacred by Kony rebels in the last massive raid conducted in Soroti approximately six years ago. She goes on to say matter-of-factly, that the parents were among those chopped up and boiled in pots. I do the math--Susan must have been in her early teens and Akiror probably a year old. She then says that Susan has been looking after the family since. The grandmother is too old to do so, she continues, and she too needs looking after. She also mentions the fact that Susan has a one year old ( a child belonging to a cousin...I find out later). I continue the math--so she is looking after four siblings and a child of her cousins, plus a grandmother (I have to repeat the information in my head as it is rather shocking)...and, the woman says and cuts off the trail of thought, "Susan is 19 years old." My heart breaks as I continue to listen to the story and the first thing I think of is, "I don't care what kind of budget we have on Hope ward, we are treating this child's (Susan) sister." I, of course, think of something we can fix but are aware of the many things in this life story (Susan's and Akiro's) that we cannot fix...not with chemotherapy, not with reconstructive surgery, not with medication...
When they leave the office to sort out admission procedures, I am left to my own thoughts and I am surprised to note that they are not of Akiror (the young child with a rare disease), but of Susan, her caregiver and parent. I am in the process of embarking on Rose's Journey. In fact when I meet Susan, the walk is just two days away. She reminds me in every way of my self 20 years ago. Her story is heart wrenching, it is unique, it is different, and yet similar. A story of tragedy. Here is a young woman waiting to be seen, to be loved, to be cherished, to discover hope, longing for relief, waiting for the restoration of her spirit, waiting for someone to care. Does she have a store of tears...I wonder! Whilst in office, and as I sat observing her, she had hang on every word from Jemima, the Hope ward coordinator, and I could see a glimmer of hope when she was informed that she and Akiror would stay on Hope ward; that Akiror would be treated here. A glimmer of hope and a beginning of something small...
Alone, and in thinking about the reasons I am walking again, 20 years later, I think of Akiror and the care she will receive on Hope ward. I know she is in good hands--so many people are giving money to make this care possible. I know she too will be in my journey. Then I think of her sister Susan and the next 20 years of her life. Will they be anything like mine? Will someone come along and say to her, "It is good you exist?" Will someone say to her "We will not let you go, we will hold on to you!" (Like my Irish parents said to me 20 years ago). Will someone say to her...we will stand with you; we will walk with you through the valley of she shadow of death; we will feel a little of what you are feeling and we will be around 20 years from now!
When I walked on July 11th, not only did I ponder the Grace of God in bringing into my life a family to say the above to me, I prayed for the same for Susan. Not only did I think of little beautiful George, but also of Susan and Akiror...and I saw many Susans and numerous Akirors on the side of the road "I am walking fro you and me," I thought. "We are singing for you today," they said.
More later...

3 comments:

Eden said...

What a story this is, Rose! Your description of these sisters felt like it slipped through the cracks of my heart. I really appreciate your blogging here. - Eden

Grania Brigden said...

Thats why I love Hope Ward, it is what you say... gives that glimmer of Hope to those who have lost it. Well done again on your walk, what a fantastic cause. Love Grania

RNC said...

Folks I found out after posting this blog that Susan is actually 17 years old which is quite ironic as I was 17 when I first walked. I am scheduled to go with her to her home village sometime next week. Will update you accordingly.
Much love
Rose