It took over a year for me to be ready to post this blog, but here it is, a memoire of bringing my son, Sam, to experience the place and people we love and the sadness, fear and education we faced when he was infected with malaria.
The road is dry and dusty, so dusty that the leaves on the bushes that line the street are covered in red dirt and they look as if the bushes are dying. Underneath the green peaks out and the orange and yellow flowers add confusion to the view. The road is so bumpy that the van heaves back and forth under the strain of pot holes created during a time of great rain, now cemented into deep ruts in the road. Cradled in my arms, with his head resting against a pillow to attempt to give him some comfort is my 8 year old son, Sam. He has a fever again and he has barely eaten in two weeks. This morning I negotiated with him to eat three Ritz crackers with peanut butter. He doesn’t want to eat, though he tells me if I had the ability to give him a cheeseburger from his favorite restaurant he would eat that. But I don’t have the ability, because we are almost 9,000 miles away in rural western Kenya. I consider the situation – his fever is higher than it has been in two days – 101.7 at noon. I have one dose of medication left to give him and he doesn’t seem to be getting better. This morning the diarrhea was back and as we are jostled along the bumpy road his face is strained and he is moaning. In front of us is a 5 hour drive from Kitale Town (western Kenya) to Nakuru – the next big city on the way to Nairobi. I am afraid that the drive will be too difficult for him – that the anti-diarrhea medicine wont work, or that we will have car troubles and the 5 hour drive will turn into 8 or more hours. It’s happened before, you never know in Kenya when a tire will blow out or an engine will overheat. I am afraid that if he is too carsick he will vomit his final dose of medication and then we will be in real trouble. But then I remind myself that at least the hallucinations have gone away, and he has been sleeping through the night, even if he does wake up and immediately have to navigate through the mosquito net and jump out of bed to run to the bathroom. But the yelling, crying and confusion are gone, and that is the best sign, the sign that the malaria is healing. He looks up at me and touches my face, he nuzzles into my lap and smiles the sweetest smile. A smile that says despite how miserable he feels he is happy to be with me. I take quick pleasure in the sweet look on my sick child’s face.
I run through the scenarios and options in my head – should we make the full drive to Nairobi in one day and hope to catch an early flight out – or will the drive be too much for him? Should we stay another night in Kitale and start the drive tomorrow and maybe he will be stronger? Should we drive to Nakuru and seek another doctor’s visit at a bigger hospital to get another blood test to see if the medication has cleared up all of the p.falciparum parasite in his blood? I know more now about this tiny parasite than I ever wanted or needed to know. Like the fact that the parasite infects the red blood cells and actually causes them to explode, or the fact that my child is in the category for the highest risk of dying from malaria being a child with no previous exposure to malaria and most likely to progress to cerebral malaria which can cause brain damage and death. I take no comfort in the fact that we took every precaution; we used nets on the beds and he was taking prophylactic anti-malarials. In fact it strikes more fear in my mind because if the malarone didn’t prevent him from getting malaria, how do I know the medication they are treating him with is even working?
As we drive along I am overcome with grief and worry. The children we drive by along the road are familiar with our van and they run after us yelling “mzungu, how are you?” cheerfully hoping for a smile and a wave and I barely have it in me. I raise my hand and give a strained smile and the child stops running along the van and just stares back confused to why today I am so unfriendly.
We stop at the children’s home to pick up my co-travelers. My friends who joined us on this trip to Kenya that was supposed to be an amazing eye opening and life changing trip for our middle child, just like it was for his older brother, David. Mike is there, my wonderful husband, who spent the day teaching leadership development to impoverished Kenyan pastors and their wives; encouraging them to carry on and seek to grow their ministry in the midst of unrelenting financial and human struggles. I am happy that he had the chance to have a break from tending to our son and I see him standing in the classroom with his sleeves rolled up, answering questions to a full room. He catches my worried eye and I break down. I can’t be strong anymore, I am too scared and all it takes is his eyes to see right through me and he knows – we need to make a decision to try to get back home as soon as possible.
I look around and I recognize in that moment that this terrible disease, caused by the tiniest of parasites inside the tiniest insect, is just one of so many struggles that the mothers and fathers of my heartland must deal with every day. And it is deadly. My mind flicks back to the sign in the clinic where we brought our son to be diagnosed and treated for malaria and right on the wall it said “Free fistula surgeries”. Another reminder of the burden mothers must bear in Kenya, as in much of east Africa. A land where sorrow is great, dangers are real and singing and dancing overcome all, because singing and dancing are free and available to all.
In the days since Sam’s malaria diagnosis I am often caught in contemplation over what I can learn from this experience. When we are on the other side of the trauma and are reflecting – what will come of it? How will God redeem this situation for good? I feel confident that the redemption will come with time, but I fear deeply that the worst is not over, and frankly I don’t want to learn anymore. I look into the faces of the Kenyan mothers gathered near me. I know that they know the pain and worry of watching your child get sick and not having any guarantee that they will survive. I picture in my mind that if my special little guy, my child that is of me, dies – I will die along with him. Then I picture the hurt and pain that will come to my two children home in Colorado. My oldest son, and my little girl – who at 6 years old has already lost one mom to death by deadly disease in western Ethiopia and lost one father due to poverty, and I marvel at how strong she was to survive all of that at only 2 years old and severely malnourished. I am simultaneously struck by the heartache of the life she has known, and stubbornly determined to pull my head out of worst case scenario and embrace that we will be fine. Because we have to be.
So I find Mike and we begin to make a plan to head home. Home to the perceived safety of American life, home to the guarantee of that cheeseburger and familiar bed that our 8 year old so desperately desires. It’s hard to reconcile in my head that with a couple phone calls we can so easily change our circumstances because we have he financial means to hold some level of control over our lives. For the parents of over 580,000 other children per year in sub-sahara Africa that is not an option, they don’t have the way or the money to seek treatment for their child and that child will die of the very same tiny parasitic infection of the blood that is currently wracking my child’s body.
As difficult as this situation is, there is also an incredible silver lining, my compassion and understanding for the precarious nature of parenthood in poverty stricken east Africa is deepening. My dear friend and co-laborer in the fight for justice for impoverished children and families of Kenya said something to me that has been marinating in my innermost being. My friend, born and raised Kenyan, an orphan herself, a mother of 5 children, a woman who has cared for over 30 orphans on the front lines of the worst kind of poverty. A woman who has faced many challenges in her life, a woman who puts on an amazing smile and brings joy to every child she meets. A woman who doesn’t seem to be rattled by any difficult decision. She said to me, “I don’t do so well when children are sick. If my child gets that sick I can’t stand it – if I think it is so bad I will just leave the house, I will walk out the door”. While I very much doubt that is true (because I have seen her stand firm in the face of so much tragedy) I don’t judge her for a minute. She has watched a loved one die more times than I even know, succumbing to the helplessness of fatal disease. I wonder if she has decided that in order to survive she couldn’t watch her child die, and it just makes more sense to walk away.
I am an adoptive mom, a member of the adoption community and my chosen profession is an orphan advocate so I hear a lot of people say, “I just don’t know how someone could do that – could leave their child and walk away”. Sick, sad and hungry children are left as orphans on the streets and at orphanages every day around the world. It’s so easy for wealthy people to assume they know what they would do in that situation. But to be perfectly honest – we are completely ignorant of what it takes to survive in this environment. Sometimes walking away from your child is the best option, the only option you have for them to survive, and for you to survive. One thing I can tell you is there is no way it is ever an easy decision.
I experienced four days of walking in similar shoes, and really they weren’t even close because I knew with a few phone calls and a credit card I could drastically change our circumstances. But this experience has given me a whole new sense of compassion and respect for the mothers and fathers who fall in love and raise their children in the face of the very present danger of losing them every single day, with absolutely no control over their circumstances because of the poverty they were born into and kept under. I have respect for the courage and determination it takes to find a way to keep living, keep loving and keep doing what is needed to help your child survive.
On our journey home, across the almost 9,000 miles of land and ocean I was binge watching the first season of the HBO show “Six Feet Under” – because hey – what else is there to do when locked in an airplane for 21 hours? In one episode a mother suddenly loses her 6 year old son. Two of the main characters, Brenda and Nate, are discussing the horror of losing a child and Brenda makes the observation “If you lose a husband or a wife, you are a widow or widower, and if you lose your parents you are an orphan, but have you ever noticed that there is no word for when a parent loses a child? I think it is because it is too horrifying to even name”. I think in the face of that reality there really can be no judgement. There can be grief and confusion, and rage over the injustice of life in this world, but really if you truly understand there should be no judgement.
Much of this insight came to me as I held my little boy in my arms, feverish with malaria while driving across the Kenyan countryside. As we drove the long road to Nakuru I passed one of many small shops named after God – Emmanuel “God with us” vegetable stand, Tumaini “Hope” Hair Dresser, and Omega Gas Station. It was the Omega Gas station that reminded me of a Kenyan worship song that I have heard many times in Kenyan church. The lyrics are “You are the Alpha and Omega – we worship you oh Lord, you are worthy to be praised”. In Kenya, the people who can’t depend on their own resources can always depend on God’s presence and ever-present help in their struggles. I recognized that as I was held captive to the circumstances of having very little control over the outcome of my son’s illness. I sang that verse of that one song over and over again in my head for 5 hours of driving across Kenya, and all night as I lay next to my son in a hotel bed in Nakuru. And I awoke, and Sam smiled at me, and he said he wanted to try to go to see the animals at the Nakuru National Park.
We still had a long trip home and another 10 days until Sam was fully healed. And now that I am home and I can breath I am thankful for these insights and I can feel “Tumaini Hope” washing over me. I am thankful that we had the money needed and access to medication for my son in Kenya. The resources I had to keep my child well, safe and alive are not available to all people. But if we can each see and feel the struggles that others are facing and we have resources to make a difference, it is our responsibility to take action to do something. So many of us have a little excess we can offer. Our family started Light Up Hope to do that very thing – in four years it has grown beyond our wildest dreams with the support of so many people who have placed their resources in our hands to make a difference.
And we now have had the privilege of launching our LIFT program: family support to keep children healthy, safe, educated and unified in their homes with their parents or guardians. We know the struggles that these families face every day to help their children survive. Children like 9 year old Claire. Claire lives with her grandmother, her mother and two cousins. Her favorite color is red and she loves rice and loves to jump rope. Her grandmother owns a small farm and depends on financial support from her grown children to provide for Claire’s needs and the needs of her other grandchildren. Due to illness and poverty Claire’s grandmother barely has enough money to provide for herself and her grandchildren. Claire’s mother lives with them but she is very ill and often cannot work so the burden falls on the grandmother to provide for the family and there is only so much she can do. She is undereducated and her job skills are limited to sustenance farming. She loves each of her children and grandchildren and wants to take care of them but it is a challenge and the whole family is really suffering. Our LIFT program provides Claire with money for school fees so she can attend school. It will also provide Claire’s grandmother with food and access to healthcare for Claire. It will provide the little extra support Claire’s grandmother needs to be able to raise Claire in her home, surrounded by her family members, and it lowers the likelihood of Claire’s grandmother ever having to walk away from Claire in order for Claire to survive.