Tuesday, April 24, 2018

As a Mother with a physical disability...


All parents go through a whole lot for their children. Many many struggles.. some physical, some mental and some emotional. As a Mother of a soon-to-be 3 year old, my trials have only begun. 

It all began for me the day I realised I conceived. The visit to the gynaecologist to confirm pregnancy was the last time I wore my prosthesis before I abandoned it for more than 10 months. As a hip disarticulate amputee, the socket of the prosthesis covers my abdomen and the pressure when I walk would be way too much on my tummy. Until then I was a very independent individual who has lived alone in a city, travelled alone and managed everything myself. I depended on my prosthesis for most of my work and had hardly ever used any other walking aid. I used to hop about at home if I didn't have my prosthesis on. I am so comfortable using it that I have gone many many days wearing my prosthesis all day and all night taking it off just to shower when I was a bystander for my parents/in-laws at the hospital. No one who sees me otherwise would know that I have a disability pegged at 90%.

And all of a sudden I found myself confined, constricted and dependent. And while extreme nausea & vomiting kicked in, I had a bigger challenge at hand. I had to mostly rely on crutches as most places in India are not wheelchair accessible. I had, until then, never really used crutches. We had to move out of our home in Mumbai as it was a duplex and into a rented apartment. My in-laws are the most wonderful people and make the biggest compromises to suit my comfort without a second thought. My parents, always my strongest pillars, flew down to be with me for many many months. My parents and Father in law lived with us as a family. I cannot tell you how fortunate I am. Yesterday a fellow amputee asked me if I ever felt bad that this happened to me. I cannot say I haven't. But every time I get such a fleeting thought, I begin to count my blessings. I have so much to be happy about.

Learning to negotiate staircases was one of the biggest tasks. Also, managing crutches on uneven surfaces that most places in India are full of. As my stomach became larger, looking at the ground I landed my crutches on became increasingly difficult. As my weight increased, swinging my body while putting my entire body weight on the crutches was worrisome. The one nightmare I had a million times through my pregnancy until the night before I delivered was that the crutches would slip and give way and I might hurt the baby. The same thought. A million times over. When I had to depend on external support devices and keep faith that every time I took a step it would not give way.

But that didn't mean I stayed indoors. Not at all. The wanderlust in me wanted to go out, explore places. I planned a short trip to Singapore, the most wheelchair accessible city in Asia. But my mom said that everyone would get way too worried about it. After I moved to Singapore in 2016 I realized what a breeze that trip would have been. Y&I had to settle for a babymoon in form of a staycation. I also went out with a big group of friends to Daman-Silvassa for a couple of nights. The resort wasn't exactly wheelchair accessible but my friends are the most wonderful people, so supportive always. In and out of pools, shopping in markets, walking along broken sidewalks. I've done it all.

As a fiercely independent person, by far my biggest challenge was, but, in my head. To get used to taking help. To go from being the facilitator to accepting assistance at every step. We always had a helper to clean but now mom took over most of the cooking. The tummy was getting too heavy for me to stand on one leg for more than 5 minutes.. and using crutches meant both my hands would be occupied to let me do anything with them. Carrying a book or a water bottle from one room to the other was very difficult. I used to put a tiny sling bag on my neck to carry small things like my phone. My sisters, nieces, nephews, uncles, my extended family came to Mumbai to spend time with me. And I had the most wonderful obstetrician. While she admitted to not knowing exactly what to expect, she was as cool and adept as I would want my doctor to be. Due to the pelvis being tilted to one side and the head not engaging correctly (as a result of my body growing from childhood to compensate for the missing hip), I had to go in for a C-Sec.

After I got home, the crazy hormones got the better of me. The fact that I couldn't walk my baby to sleep or that I couldn't carry her from one room to the other was painful to say the least. For a few crazy months I believed that my child did not prefer to be with me because I couldn't carry her around!! Silly me. And then like a godsend I discovered that I could use office chairs at home. They were not as difficult to use as a wheelchair but I could get my work done. Until today I use these roller chairs at home as I can quickly run about to reach my daughter, something that my prosthesis may not have let me. And as I am missing a hip, sitting on my rolling chair for more than half an hour wasn't easy. I got multiple back spasms in 2 months and was in excruciating pain. With some research and prosthetist advice, I got myself a specialized cushion that could offer more support on the side I'm missing the hip.

When my daughter turned 2.5 months old, I was allowed to get back to using my prosthesis. I cannot tell you how ecstatic I was to finally be able to walk again, something I learnt for the third time in my life. Slowly, my freedom was back! 

When my daughter turned 1, we were faced with the prospect of moving to Singapore. The initial months were a little difficult. Managing an extremely active infant 24/7, managing the house all by myself. Menial chores like cooking, cleaning became so much more difficult with a toddler in tow. And the worst of all. Not being able to step out with my child into a public place. What if she ran away? What if she's in trouble and I can't get to her fast enough? I didn't dare venture out alone with her. I got groceries and all household supplies delivered home. I couldn't afford to take her out alone. THAT was an extremely tough situation to deal with. I bought the baby leash but my daughter got very upset each time I'd try to make her wear it. 

But children are extremely receptive. At 2 and a half, she understands that I cannot run after her, that I need more time. I take her to school and bring her back. She doesn't leave my hand 'because mommy cannot run'. They adapt. Once last month I took her out to a place where my husband said he'd meet us. That day I won a battle within myself. It might be something anyone else would be taking for granted. But for me the fact that I can take my daughter out by myself is something to be celebrated. I am so thankful that I have a very very understanding child. That I have the most considerate in-laws. That I have such loving friends. That I have the most supportive parents and family. That I have a husband who is my best friend and my shadow. That any hardships can & will be overcome if you have the resolve.

3 comments:

  1. I read this today morning and I wanted to say so much. I kept staring at the comment box and I've literally run out of words. You are amazing Tintu! In a zillion ways! Keep counting your blessings and I am sure you'll run out of numbers to count them.. With lot of love...

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  2. Absolutely! Thank you for all your love and support, Anila. Much love to you..

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  3. Wow..you are such an inspinspiration. I truly understand how hard to go through some moments yet we cherish them as we pass the storm. I only go through very little of what you go through as I raise child with disabilities from 6 years. While raising him I put myself disable first. I am glad I read your blog as I really need to strengthen myself. Please have a look at my motherhood experience (blog) when you find sometime.
    mother-in-me.blogspot.co.uk

    Thanks

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