Like all mums I constantly worry about my children. Are they getting enough green veggies? Are their vaccines up to date? Are they safe? Do they feel loved and confident? Is my first aid kit fully stocked? Are they getting enough sleep? Did I sign Lily’s school book? It’s our jobs to worry. Then as an autism parent, there are few more concerns: Will her speech improve before she’s off to school? Will kids shun her? Will she understand everything said to her? Will she have a dream career that the world will feels she’s not equipped for? Will she experience ridicule? Will boys try to take advantage of her innocent nature? How will I explain puberty and periods to her when she still has the mind set or emotional intelligence of a 6-year old (autistic girls develop earlier). Will she find a good guy? Will teachers/lecturers be understanding? Will she experience jealousy if she excels at her career/studies etc.?

The latest worry though came from something completely unrelated. When Lily was two days old I entered the NICU feeling extremely anxious. I couldn’t explain it; call it mother’s intuition. Will suggested that it was just disbelief since she was here and healthy after a stressful pregnancy. When I looked around, none of the nurses made eye contact and I knew something was wrong. The Sister in Charge walked up to us and said, “The doctor wants to speak to you.” It was 11am and he would be available after 1pm. I could sit on a hot stove and those 2 hours would feel shorter.

His words were simple: “We have a problem. Actually we have four. If it were three I think we would be OK but I’m not the expert. I heard a murmur. Your daughter has four heart defects. It’s called Tetralogy of Fallot.” Doctors aren’t known for sugar-coating. Within a second life as we knew it was ripped into pieces. I don’t remember what he said after that because I was having an out-of-body experience. I was looking down at myself, with Will holding my hand but I couldn’t hear anything. My eyes were so filled with tears that I couldn’t see him anymore. I was looking down at my perfect little bundle and I realised why she was never really pink. She looked so sweet and peaceful and perfect. How could he be saying this about her? I kept wondering, “Is this it? Are these two blissful days all we get with her? Do we only have a few more hours with her to sniff that sweet little head that smells of roast beef and gravy? Do we get to cuddle that tiny little body and hold on to those pudgy fingers for only a few hours?" Then something pulled me back. He said, “But we have a solution. We have a solution. I have set up an appointment with a Paediatric Cardiologist who will explain the defect. It can be fixed.” Dammit, why do doctors never lead with the good news? Defect. Such a piercing word. It echoes in your head. Tetralogy of Fallot works like this: There's VSD ( hole in the heart) and an "overriding aorta" which means the artery that carries high-oxygen blood to the body is out of place and arises above both ventricles, instead of just the left ventricle. This causes two other problems: Pulmonary stenosis, a narrowing or thickening of the valve that connects the right ventricle to the pulmonary artery, the blood vessel that carries low-oxygen blood from the heart to the lungs and Right Ventricular Hypertrophy, which is a thickening of the muscular wall of the right ventricle - obviously as the heart works harder to compensate the muscle walls become thicker and narrower. That night, I wept in my mother’s arm. Like, full-on gross sobbing with snot bubbles. For the first time in a long time, her “Everything will be alright,” really comforted me.

We made a decision not to tell anyone. Her surgery was successful and today, she runs and jumps and gives lip like any other kid. J It’s something we almost forgot about. Until her second birthday when a friend pointed at her scar and asked, “What’s that?” Our lives were/are wonderful. But the other day it hit me what her future would be like. Because, though it may be in the past for us, it’s very much her future. She's had one surgery, so many children have 6, 7 sometimes 11 before hitting puberty. We were the lucky ones.

Last week, Lily came running in and went straight to her sister. She almost leapt up to her, hugged her and rubbed her face in Ila’s little neck and hair. She asked, “Did you miss me?” Suddenly I remembered a conversation I had had with an old friend. We knew each other for 12 years, yet she never mentioned the fact that she had the same heart condition as Lily. I was reminded that the doctors told her that she wouldn’t be able to have kids because pregnancy would be too much strain on her heart. Today, she has two beautiful, healthy daughters. She was our solace during a difficult time, a glimpse into Lily’s future. But here I was, staring at Lily holding her sister and thinking about the time I held my sister like that. I knew then that I wanted to be a mother. But what if she won’t be that lucky?

I know that if I had to choose – if my life would be put at risk to have Lily and Ila that I would do it over and over again. I did. But Lily will always be my little baby. How am I going to be OK with letting my little baby risk her life to have a child of her own? Will I be as strong as my mother and hold back tears to console her? Will my, “Everything will be alright,” comfort her in the same way it comforted me? I sat with these questions for two weeks. I’ve always offered advice and support to friends in similar difficult situations. Will I be able to do it with my own daughter? Eventually, I took a writer’s approach. I looked up the word ‘mother’.

mother |ˈməT͟Hər|
a woman in relation to a child or children to whom she has given birth.

What made me smile was that “in relation to a child”. I stopped there. Because a motherly relationship can be anything, not necessarily giving birth to a child. I decided that should she ask, I’ll tell her that motherhood can come in any form – through adoption, in a community or through surrogacy. But ultimately, that should the time come, that the decision will be hers and I will try my utmost to comfort and support her.


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