This post was originally posted HERE at Sonnolenta.
I’m writing this to you because you’ve asked me questions about Issy Stapleton, an Autistic girl whose Mother tried to kill her. You’ve no doubt read about other parents of Autistic children who have killed their children. I’m sure it’s confusing when you read that people feel sorry for these parents, who felt murdering their child was an acceptable way to deal with their problems. I’m sure this makes you wonder if at some point in time I wanted to kill you.
My answer to this question is: NEVER.
From the very first moment I discovered I was pregnant with you, I wanted you. You were a little miracle, you see… because for the first two months of my pregnancy, I was told that my hormone levels weren’t rising, or that it was a false pregnancy, or that I should go home a lie down, and take it easy- because I surely would be miscarrying you. You outsmarted them all, little one. Finally, at an ultrasound appointment, you let them know you had no intention of going anywhere- with a tiny little heart beating. I cannot put into words the joy that this brought me. I loved you more than anything I had ever loved before, and I had never met you. You were my sunshine from the moment I heard your heartbeat.
At this point, I started getting lectured about genetic testing. As a thirty year old mother, I was told my pregnancy was “high risk” and that the chances of you having a birth defect were higher. I was told that maybe my pregnancy wasn’t progressing normally because you potentially had one of these defects. While some they could ascertain visually from viewing the ultrasound, others required genetic testing. They would need to stick a big needle into my belly and withdraw amniotic fluid from within the cozy little bubble which you inhabited. There was risk with this testing, but they urged me to do it. So that I would know if you were “alright”. I refused the testing. I didn’t want to do anything to put your life at risk. I knew there was a chance you could be born with one of the many genetic defects listed in the pamphlet they gave me, but I didn’t care. I wanted you just as you were. I would love you no matter what.
As my pregnancy bore on, it became clear that it was going to be a difficult one. I had many false alarms, which then turned into real alarms. I went into premature labor, starting at twenty weeks, several times. You and I spent a lot of time at the hospital, late at night. If you had been born that early, you would most likely never have survived. I was given shots and medicines, and told I had to go on “bed rest”. I spent most of the next sixteen weeks laying down, only getting up when I absolutely had to. It was hellish, but questioning my decision to have you never crossed my mind.
You were determined, and so was I. Through all of the pregnancy aches, pains, sleepless nights, weight gain, headaches, and confusion about the future- questioning my decision to have you never crossed my mind. When I was admitted to the hospital on May 11, 2002 (my 33rd week of pregnancy), in active labor, I knew you would soon be here. They tried everything to delay your arrival, but it didn’t work. I was told you weighed only three pounds and had a 40% chance of survival. I had social workers come into my room before you were born, to give me grief counseling. They even sent a priest. They wanted me to understand that you might not survive. You showed them.
You arrived at 11:37 AM on May 13, 2002. The day after Mother’s Day. It was a dark, rainy morning and you shouldn’t have arrived until the very end of June. Despite being so early, you unleashed a furious cry within your first few seconds, and I finally got to meet you. My first thought was that you looked like Yoda. I can’t lie, because you were a greenish color, covered in white stuff, with a wrinkly little face. To be honest, I only held you for a few seconds, because they whisked you away to the neonatologists that were waiting to assess you. I fell into a deep sleep, aided by pain medication.
When I awoke, I didn’t know where I was, but I knew that I felt very empty. You were no longer in my belly, and the empty, sad feeling of you no longer moving, kicking and hiccuping stayed with me for weeks after you were born. I probably would not have felt this way if I could have had you with me, but I couldn’t. You were in the NICU for those weeks. I went to feed you several times a day, and I was only allowed to have you out of your isolette for ten minutes at a time. You had severe jaundice, torticollis, and no suckling reflex. I was not able to breast feed you, and bottle feeding you was often an insurmountable task. The nurses would give me the tiniest little bottle, filled with 5 ml of formula, with which to feed you. You were so tiny, and had several IV’s going into your feet, and a big one on your forehead. You still to this day have a squiggly little vein in your forehead from where that IV was. It would take forever to feed you even a tiny amount, and then you would spit it all back up.
When you came home from the NICU, I barely slept. I was a single Mother, so I didn’t have anyone to help me out. My parents lived several hours away. Your sleeping was erratic, you took over an hour to drink a tiny bottle, and then you’d sleep for fifteen minutes and wake again wailing, only to start the whole cycle. During the day, the slightest little noise awoke you and you’d cry insatiably. I was desperate for sleep, desperate for help, and desperate in general. I didn’t realize at the time, but I was suffering from post partum depression. There were days when I truly thought I was losing it. But you know what? The thought of killing you never crossed my mind. Being a parent is difficult, but that’s what we sign up for when we decide to become parents. I had no help or support and was caring for a newborn infant and running a business at the same time- it felt impossible and hopeless very often, but I loved you, and I was determined to make it through. No matter what. Killing my baby or myself because I was depressed and times were tough was not an option.
I’ve loved you since I first found out you existed, and I will always love you. No matter what. Though the world might call you many names, and Doctors over the years have written many scribbles in their ledgers, you are and always will be my Son. And I will always love you no matter what labels are given to you. No matter how difficult times got, I want you to know that I never thought that killing you was a solution to the difficulty I was dealing with. Murder is wrong, no matter what the circumstances. I don’t want you to ever be concerned that receiving an Autism diagnosis will change things, because it won’t. I will still love you. You and I don’t have much family, or assistance, or supports, but that’s okay. We’ve made it this far without it, and we will continue to thrive. I don’t want you to worry about those things. I don’t want you to worry that things will change. There’s one thing that has never changed for your entire life, and that is how much I love you.
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