Many times we set out with the intention to help another, and it turns out that they end up helping us in ways we never imagined. This is exactly the experience I had today during a visit with one of the families we help at the Malki Foundation. The Malki Foundation empowers parents of children with disabilities in Israel to care for their children at home. We pay for the therapies that children need to reach their greatest potential – treatments usually not covered by insurance and social services. The purpose of our visit was to see, in real time, what happens with the money we raise. It was here we met E, an inspiring mother who was kind enough to open her home to us during her son’s occupational therapy session.
E is a tall elegant woman from Belgium, who has lived and travelled all over the world. She lives with her 5 children and husband outside of Jerusalem. There is not a trace of downtrodden or “miskena” about her. When we come into her bright, sunny apartment, there is a table set with a tablecloth, nice glasses, juice and cake. She urges us to sit down and eat and drink. Her son, H, is playing with his therapist on a large purple soft-play mat next in the living room.
E is pregnant and sits calmly in her chair explaining all that she has done for her 8 year-old son H, who suffers from developmental and physical disabilities and severe epilepsy. I can only imagine the hell she’s been through watching her son lose his ability to walk, talk, and even move, after a series of seizures, lasting for a few years, wreaked havoc with his brain. The seizures were so bad and so frequent that they left his feet permanently curled inward, which means that in order to walk again, he will need surgery.
And then I watch, with tears of happiness in my eyes, as H moves around on his knees, playing with his therapist, grabbing toys and throwing balls, and smiling the whole time. And there sits E, with her pregnant belly and her 5 year-old daughter hugging her lap, calmly remembering how bad it was, and silently glowing about the progress her sweet son has made.
Of course, it hasn’t been easy. She has had to fight to choose the therapists she wanted (as opposed to those that the government wanted to send). It took her 3 years of battling with Bituach Leumi (The Israeli Social Security branch) to get the subsidies her son deserves by law. They are currently working with a lawyer to fight a Health Ministry policy that, if put in place, would eliminate the sale of the strain of medical cannabis that was responsible for stopping H’s seizures and allowing him to come back to the happy, active state we witnessed during our visit. And on and on she goes, with a grounded, sincere countenance, listing all of the things she has done to help her son and her family live their life in health in happiness. I don’t hear anger; I hear calmness, purpose, acceptance and love.
As E speaks, I soak in all she has to say. She has so much wisdom inside of her. Wisdom that comes from a clear purpose, and fortified by sleepless nights, endless phone calls and emails with bureaucrats, and Gd knows how many consultations with doctors, therapists, alternative medicine practitioners, and advice on whatsapp support groups. We joke with her – you should write a guidebook for other parents. And she answers back – I don’t have time now. The time I have is for my children.
When I get home, I find that the qualities she exuded have seeped into my own being. I find that I am more calm, more understanding, more compassionate with my own daughter, even after a long day and the beginnings of a headache. I am more secure in my ability to give her what she needs, and more settled with my decision to work part time so that I can spend more time with her. E has awakened the inherent parent in me.
After this experience, it is foremost in my mind how incredibly linked the parent and the child are to each other; that one’s success is very much tied to the strength of the other. It’s not just about the child’s progress, it is also about the dedication of the parent in believing in and fighting for what’s best for the child and the family.
When we set out for the visit, we thought it was to observe how paramedical therapies can help a child progress in his development. By the end of the visit it became clear that we were witnessing power of the parent who believes in the potential of their child, and whose enduring dedication and love brings her child back to life.