Many who know me, know that Malawi, Africa is near and dear to my heart. It started when I hosted Moses, a pastor from there, in 2009 and again in 2010. He and I have remained close. From what I understand, Malawi “the Heart of Africa” is a beautiful little country and also the poorest in all of Africa.
I first heard of MAP through the American Occupational Therapy Association message board from Sue Coppola, the American representative of the World Federation of Occupational Therapists. She said she went to Lilongwe, Malawi and encountered an organization called Malawi Against Physical Disabilities (MAP) (this is the exact city where Moses is from) calling for assistance from occupational therapists. MAP works to get adaptive equipment, such as walkers and wheelchairs, to those with physical disabilities. I contacted MAP last year with the intent to get equipment in their hands. I have been disappointed in my efforts as I have learned there are many barriers to getting equipment to Africa. I was able to connect MAP to representatives from the World Health Organization (WHO) as they currently have an international initiative to train people on wheelchairs in regions with limited resources.
This last Christmas, my 12 year daughter put on her Christmas list that she would like money for wheelchairs for Malawi. She emailed her list to her family. For Christmas she received $112 for Malawi. I know that doesn’t seem like much, but Moses tells me $100 will pay for a month or more of rent. We passed that money along to MAP. Here is the response we received:
Your daughter should has a big heart. I hope she continues and grows with that Heart, I am very touched. If we had a thousand daughters like yours, the world would be a very nice place. Please convey my sincerest thanks to her. Tell her the money will be use to make walkers for some of the children who have become disabled due to cerebral palsy. These ones, to be able to eventually start walking they need walkers. Angie once more thank you very much. Let us keep in touch. I shall send a photo of one of the children who will receive the walkers from your daughters grant.
I post this in hope that at least one person may feel the urge to help those who are as lucky to be from a country such as America. If you wish to 1 of a thousand daughters (or sons) here is how to help:
Malawi Against Physical Disabilities P.O. Box 256 Blantyre Malawi
I often get asked “How do you do your job?” followed by “It’s so depressing” or “I couldn’t handle it”. On most days I disagree. I get to meet great kids with amazing spirits. They teach me far more than I teach them which includes how to be a better person. But today was hard. Another little friend of mine was handed a “death sentence”. I felt guilty because I couldn’t talk about it with his mother because I knew I couldn’t keep it together. As a scientist, I know that the human body is a complex system beyond our comprehension. As a spiritual person, I get that some things are meant to be beyond our understanding. I still find myself asking “Why this kid?” “Why this family?”
Pediatric rehab therapists are on the medical front line. The family is handed a diagnosis by a physician and left to figure it out on their own or referred to the social “experts” who really have no idea how how it feels to have a dying child. Families often turn the us (rehab therapists) because we see them every week. We are there to see tiny celebrations and share disappointing set backs. They bring us videos because their child held a cup or said a word. They ask questions we can’t answer: why? or how long? or what happened with other kids you have seen? We see families in all stages of grief. Some have been angry because we can’t fix it. Some have thought if we push harder and faster the child can cheat death. Some have shown accepting grace.
On days like today, I wonder how the pediatric therapist is supposed to grieve. We are expected to show empathetic neutrality–be a compassionate listener, but keep our emotions in check. The truth is, it sucks. Watching children die and seeing their families experience overwhelming grief is not something I would wish on anyone. Today I decided that instead of trying to rationalize it, I would think about what I learn from it.
I do not know what it feels like to be a parent of an ill or dying child. I never pretend I do. I pray that I will never know what it feels like and thank God everyday for my healthy children.
Kids are the most resilient, amazing beings I have ever known.
Sometimes the “experts” are wrong. I have seen a lot of miracles and never judge a parent’s unwavering determination to make their child better.
It’s ok to grieve and it should be talked about. Grieving is healthy human process.
Elisabeth Kubler-Ross has some excellent books on the topic. We are, after all, only human. If you are a healthcare worker and experience cumulative professional loss, I encourage you to acknowledge your feelings and get assistance if needed. Peace!
I have to admit that it’s getting more difficult to visit my mom. She has dementia and is almost blind. She lives in an assistive living facility. My mother is no longer who she once was. Gone is her zest for life, creative ideas and quirky hobbies. Once in a while I will see a glimmer of the sharp wit she always had. In the next moment, I see her staring at me…puzzled, trying to figure out who I am.
I have my mom to thank for my creativity. She loved arts and crafts–she was decoupaging before it was hip. She made the coolest cakes and boy could she throw a party. She was also a bit of an entrepreneur—sometimes at my expense (yes she took my beloved stuffed animals and sold them at Trader’s Village. I am not THAT bitter). She loved plants and sold African Violets from starts of her plants. My mom was a survivor. She picked herself up from her bootstraps when my dad walked out and worked hard to provide. She only had a high school education, but she was smart as a whip when it came to money. She was never afraid of being a little silly (as you can see in the picture). She taught me how to laugh at life and myself.
What I hate most about her present state is to watch her lose her occupations. She was an avid reader and loved to watch the stock market numbers on the television. She can’t see to do that anymore. She loved to mess about in her “little house” she loved so much. Now she is limited to a small room with only a handful of possessions. She participates in activities at the residence, but I am not sure how much she can hear or see. I know she gets lonely. My sisters and I visit her often, but she quickly forgets and thinks no one comes to see her. It is often sketchy that she even knows who we are. Leaving the facility to visit family is often challenging and frightening so she opts not to do it very often. She needs total care because she forgets to eat, bathe, and doesn’t know what time of day it is. At times, I am thankful that she can’t see the tear in my eye when she asks “Who are you again?”. I am thankful that she can’t remember what she has lost: her house, her independence, her family time, her passion for life. One thing I have learn through this process is that every day is precious. For that I am sure.