When I picked the color for Lei’s first hearing aids, it was a major philosophical decision: hide or flaunt?
Did I want her to blend in or stand out? Did I hope for her to be mistaken for normal? Did I dream for her deafness to go unnoticed or celebrated?
What do you think I chose? Her first hearing aids were bright pink.
Why did I think about it so deeply? My mom.
My mother has had rheumatoid arthritis (RA) my whole life. Most of hers, too. She has lived with chronic pain, day in and day out, almost as long as I can remember. She has had good days in which she could do more, walk more, help cook and clean up, and bad days in which she had to stay in bed or on the sofa. But even on her worst days she is still my mom, still making puns of death-defying corniness, still looking for the spiritual meaning in life, still doing everything she can to connect as a wife, mother and friend, and follow the paths of service she has chosen.
So when I chose that hearing aid color, I wasn’t thinking, “I hope nobody knows I have a disabled daughter,” any more than I’ve ever been ashamed of my completely amazing mom. Instead I was thinking, “My daughter is totally kick-ass and her hearing aids need to announce that fact to the world!”
Growing up with a chronically ill mother was not easy, but ultimately benefited me greatly. I learned to take responsibility for myself and my family from a young age. I began cooking for my family around age 14. I developed a deep commitment to being an ally to people with disabilities. In many ways, it prepared me to be Lei’s mom.
Now Lei is going through something and I don’t know what it is.
Lei is entering week two of hives, joint pain and fatigue. No fever, no new detergent, nothing new in her diet, no new soaps in the house or anything else we can pinpoint. The hives would be bad enough, but I’m really concerned about the pain in her knees and ankles. Naturally my mind leaps to the possibility of her having RA or another autoimmune disease.
I’ve seen up close what autoimmune disorders can do to a person’s body. The pain, fatigue and stress of it all … I don’t want that to happen to my daughter.
I am trying to keep things in perspective, though. If anything, my mother’s lifetime of health challenges has made her one of the strongest and most compassionate people I’ve ever known. Well, I think she had a lot of that to begin with, but living with pain every. single. day, facing it with a habit of daily prayer and spiritual reflection, has deepened her many noble qualities.
But I am also on the hunt for answers. As of right now, with the help of a rheumatologist friend and an angel of an operator at the medical center where Lei goes, she has appointments next week with an allergist and a diagnostician. Add to that her next mapping appointment on Monday and she’s going to be missing quite a bit of school next week. I dare to hope that these visits will produce a clear diagnosis for a child who has never been in the business of pitching slow and easy.
Beyond that I am praying, praying and praying. I feel like my every breath is a prayer. Maybe the response won’t come in the form of answers. Maybe all this will just go away as mysteriously as it came. It’s hard to know what to expect.
My Baha’i faith teaches that God’s calamity is His providence: “outwardly it is fire and vengeance, but inwardly it is light and mercy.” My Muslim friends meet hardships with the saying, “We all come from God and to Him do we return.” My Catholic friends talk about “offering up” their hardships to God.
Life’s tests and trials open before us avenues of growth and opportunities to refine our inner character. As much as it hurts to watch my daughter go through so many of them, I am trying … sometimes more successfully than others … to humbly accept them. Some days the pain of watching my child struggle is sharp as a knife. A short Baha’i verse has been on repeat in my head since the weekend:
In the beginning how tiny is the seed, yet in the end it is a mighty tree. Look not upon the seed. Look upon the tree…
Someday Lei will be a woman who can express her many gifts. She might still struggle with physical illness, she might still be too intense for some people, but I am clinging to the faith that she will grow into a mighty tree whose shade will offer comfort to those who love her, and bear many fruits for the benefit of humanity. I have to focus on that because if I only look at today’s fears and challenges, it’s just too painful.