Gratitude is easy and difficult. It’s easy when things are all going according to our plan and everything works out perfectly with minimal effort. It’s very easy to be grateful.
Gratitude is difficult when our situation is a little bumpy. When we’re a little lost. When the problems are a little bigger than our comfort with handling them. When money’s a little tight. When resources are a little limited. When emotional support is a little scarce. That’s when gratitude becomes grueling. The practice of this amazing human quality becomes difficult at times and impossible at other times. Gratitude becomes a luxury. We yearn to be reminded of a situation that we could live to feel gratitude again. We pray for something to happen that would make us be grateful again. We try mindfulness and positive thinking to be more grateful. We find all these exercises fake at inducing the feeling of gratitude. We don’t realize it but what is slowly happening is the process of us losing hope. The problem isn’t just lack of gratitude now. The problem is hopelessness now. And despair. And the feeling of losing control. And the realization that we have no way to make it all better. Something is waiting to snap. And usually it does. But we can prevent it. Let me take you on a little journey through my own mind.
When my daughter was diagnosed with autism, it hit me hard. For people who’ve been down the autism road probably know the uncertainty, the waiting for symptoms to blossom or fade, the evaluations that are incessant, the hope that keeps wavering, the joy at achieving the smallest of milestones and the constant fear of regression. I was initially in denial for months but continued getting her the services she needed, the help she was offered, all the while secretly admonishing myself for taking the diagnosis seriously. “Of course she’s okay. This is just an American thing. Label every kid. Slap ’em all with the autism sticker when they can’t talk. She doesn’t look autistic”. I had never seen another autistic in my life. Even though I firmly believed that she didn’t have autism I devoured literature and books and went to see multiple developmental pediatricians, neurologists, geneticists and clinical psychologists. But she has autism and has had it all along. All the times I vehemently explained her symptoms away as sensory processing disorder or immaturity or spiritedness, I secretly knew she had the diagnosis.
When you start to live the life of a parent with a child with special needs, it changes your plans for your whole life. Job searches, house hunting, post residency plans, savings account, education plans and long-term financial/personal planning. Don’t get me wrong! This life can be very rewarding and fulfilling. But this life has challenges. And I realized that one of the biggest challenges was the constant falling in and out of gratitude.
When you experience this type of an on again-off again relationship with gratitude, you become confused. You stop trusting the good moments because you know they won’t last. You start to sometimes become cynical. Some people may even report a feeling of despair. You inadvertently wait for a bad moment to mar the good ones. This dread of a bad moment happening quickly on the heels of the good moment makes you apprehensive and on edge. There is limited understanding of this phenomenon by most people and you’re pretty much on a lonely island.
So needless to say that my most overwhelming feeling when it came to dealing with autism was confusion. Add to it the constant commentary about how lucky I was to be given the charge of a vulnerable kid, how this is something Allah chooses His best people for, how this is going to make me such an amazing human being in the process. Frankly, this all sounded like a lot of useless chatter and I either countered it with anger or silence. Until…..
A new family moved into our neighborhood. They appeared to be a happy, chatty family. Sometimes I saw them working in their backyard and sometimes they’d be working on their car. They seemed like one of those DIY families who take pride in putting their screen door themselves and put a fence around their yard with minimal effort. The husband was a middle aged man with a pleasant personality. His wife was the same. They baked an awesome apple pie for me when they moved in. I was embarrassed at them taking the initiative but accepted the amazingly homey smelling pie. Adnan loves anyone who offers food so it was instant approval of our new neighbors by him.
Husband, wife and two kids, both girls were this family. I saw some strange equipment in their garage once; a wheelchair and a hoyer lift, some Lycra-material swings that we use for my daughter for occupational therapy and a large scooter (the kind that kids use during physical therapy). I didn’t pay much mind to this because we’ve had a few equipments in our home at times to facilitate my aging parents-in-law.
Needless to say that my longing for a typical child always resurfaced when I saw their girls riding their bikes in the evening, or walking with their parents to the ice cream place or just hanging with other kids in the neighborhood. It made my child’s autism that much more tangible.
After the first pie, my sweet neighbor brought many sweet treats over the summer. I didn’t get the time or the energy to make anything for her. I felt guilty each time she brought something over and once I expressed my guilt to her too but she casually waved it away. She told me she loved baking and this was her way of sharing something with me.
Ramadan came two months after they moved in. We saw each other while I was leaving for work one morning and she asked me if Ramadan was indeed around the corner. I told her it was. She wistfully mentioned that she had so wanted to have a Muslim friend most her life to know more about our traditions but hadn’t ever had one. I told her that she could join us for dinner one Ramadan and instead of a traditional dinner I proposed that we could eat a typical Pakistani Iftar meal. We set up a date and it was the middle of Ramadan.
The day came and I was super excited. When they arrived we opened our front door. She requested me to let them in through the garage. I was a little surprised at this odd request but I opened the garage. My neighbor came with her husband, her beautiful daughters and…….. her son in a wheelchair. She was wheeling him over and talking to him. Telling him where they were and introducing him to us as they put a plank on our entry door to bring the wheelchair in.
It was hard for me to take all this in without any questions but disability is an embarrassing thing to have and if possible, an even more embarrassing thing to discuss and ask questions about. We have a barbed wire around extra needs and their families. We tread cautiously around these families in our concern but callously in our bluntness and free advice. We don’t see it as some people’s life but actually their punishment for something they must have done to deserve it. We don’t talk about physical and mental disability because when we are not challenged by it, we don’t see any value in knowing about it. We have a fear of disability, sure. But more than that, we have a judgment of disability and that prevents bonds from forming.
I didn’t know what to say or do. I stood there awkwardly and said my hellos and quickly went into the kitchen to tell Adnan of this. He was equally mystified and intrigued at why they had kept this a secret. Surely we would only be sympathetic and empathetic in our response. Surely this was something that we could’ve bonded over. Then why didn’t we ever talk about it? Today I know my neighbor avoided discussing her son with just anyone because she, much like me, had not had much empathy shown to her.
We sat down to eat and it was a happy meal. Really it was. Between questions about Ramadan and praising my food like it was the best thing on earth, it was a happy meal. Her son didn’t eat. But he couldn’t. He had a feeding tube. He also was on oxygen and had a tracheostomy. My neighbor had 24/7 nursing care for him. Dinner ended at midnight. We had so much fun getting to know about each other. In the middle of all of this my neighbor leaned over and asked me “Does your daughter have autism?”. I was a little taken aback but I said, somewhat defensively, “Yes but she can talk and is actually a very good kid. Really I sometimes forget she has it”. My neighbor asked if we could talk in private. We went to our room.
“I’m sorry that I brought my son over without informing you. I really thought you knew because most people in the neighborhood know”.
“Oh! No that’s okay. I just never thought you had another child”.
“Yes! He’s my middle child”.
“Well we knew he had some birth defects but we found out late and by that time terminating the pregnancy wasn’t something we wanted to do. I had grown very attached to him and I couldn’t even think of not bringing him into this world. To be honest, his challenges were predicted as much less than what has actually transpired. So his condition is a bit of a shock”.
I felt I could trust her a bit with my own insecurity with autism. So I ventured.
“How do you stay so positive? What do you do to keep happy? I’m happy but I can get very sad when I think that she has autism. How did you make peace with his diagnosis and medical problems?”
“Hahaha. I’d like to say I’m as positive as you think I am. I’m actually very grateful. Not sure about positive but I think my gratitude makes me grateful. I’m grateful that he’s with me and not six feet under. It’s work everyday but I have him. It’s big decisions everyday but I have him. I have two girls whom I’m very grateful for. My husband can be a pain but I’m grateful for him. When I look at a single mother at his pediatrician’s office managing a special needs child all by herself I say loads of grateful prayers. Perspective makes you grateful. I’m glad everyday that he’s with me because it sure beats the alternative”.
“I wanna be grateful too but it’s hard. There are days when I am and days when I’m not. And it confuses me because I wanna show my gratitude to Allah everyday.”
“Then be grateful everyday. Consciously. Painstakingly. Naturally. Habitually. Ritualistically. Then it will come to you all the time. But you have to do it intentionally first for it to come to you unintentionally”.
So I started practicing gratitude and I started by being grateful for my job that afforded me the money to spend on my child’s therapies. I became grateful for my support system, my husband, my therapists, my child’s teachers and most of all, I became grateful to Allah for bringing an amazing woman in my life to give me perspective.
Today, gratitude is a part of my life. Even when something doesn’t go as planned I try to see how I could make it better and I try to see the lesson I learned from it. I read somewhere once that there are no failed attempts at anything. You either come out successful or you learn something from it. My daughter has huge challenges but when I see how far she has come, I practice gratitude. I started working nights when my son was born for better work/life balance and when I see my kids happy during the day because Mama is home, I’m grateful. I had to let go of opportunities in my professional and personal life due to autism but when I see how autism made me value the real things in life and how I’m a more realistic person because of it, I’m grateful.
Gratitude is an exercise in contentment. If we don’t practice it, we can’t attain contentment. When we are grateful enough times, we automatically become content and learn to live in the moment with loads of grace and trust in Allah’s decisions.