“It was early afternoon in September of 2008 and I was sitting on our enormous green couch watching the movie Twilight on TV. My 7-week old son, Asher, was asleep to my right and our dog, Pearl, was snoring on my left. My cell phone vibrated. I had saved the number in my phone as ‘Children’s genetics ANSWER.’ My heart pounded. This was the moment I had been waiting for. I pushed pause on the remote, took a deep breath, and placed my finger on the green answer button.
‘Hello?’ I said, my voice shaking.
The voice on the other end greeted me. ‘We’ve received Asher’s testing results. The results are consistent with a genetic syndrome called Prader-Willi Syndrome. This syndrome occurs when the 15th chromosome…’
She continued to speak but her voice faded away. In that moment, the world moved in slow motion. I looked down at my perfect baby and felt rage his chromosomes were so very imperfect. Seven weeks earlier, in a NICU just 6 miles away, a physician had suggested PWS as a possible diagnosis for our newborn baby. My mind went back to that day in the NICU and I heard the doctor’s voice reverberate in fragments.
‘Parents have to lock the refrigerator… children will eat until the point of stomach rupture… cognitive and behavioral issues.’ I felt sick. Prader-Willi syndrome presents with a myriad of issues, but most markedly an insatiable hunger. The part of my son’s brain that regulates hunger doesn’t function properly, which means he is in a constant state of hunger. Other symptoms include difficulty regulating temperature, psychological issues, scoliosis, speech, and physical delays, as well as cognitive impairment.
After scheduling an appointment with the geneticist for Monday, I hung up the phone and pushed play on the remote. Bella Swan and Edward Cullen were riding in his Volvo (why do all the vampires drive Volvos?). I sat in shock. In that moment, I was the only person who knew this information that would profoundly impact my son’s life.
I don’t exactly recall the phone calls I made that day or what was said, but I remember feeling dread as I called my husband, Will, at work and told him the news. Next was my parents. With each phone call, the grief slowly started to trickle down to the people I loved the most.
Later that day, I took Asher for a walk in the stroller, trying to gather myself in light of the diagnosis now forever attached to him. We walked past the neighborhood coffee shop on Manor Avenue where I’d stopped to get my morning coffee day after day. The park was ahead and to my left. I had imagined what it would be like to push Asher on the swing there or meet up with friends for a playdate. How would that fantasy be impacted by his lifelong disability? In that moment, it struck me my life had been turned upside down but had anything really changed? It’s hard to fully grasp what lies ahead when you see just the beginning of the story.
I refused to google Prader-Willi Syndrome. I didn’t want to see my baby differently. I felt if I knew more about his diagnosis, my experiences of motherhood would be changed. Will’s family tended to feel comforted by information and instantly took a deep dive into the world wide web. His sister was in medical school and was familiar with the syndrome. My parents on the other hand weren’t the googling type and subscribed to a ‘if I don’t face it, it doesn’t exist’ motto. Maybe the healthiest approach is somewhere in the middle. Over researching doesn’t necessarily prepare us for what’s to come, in fact, it might increase anxiety and take away from being in the present moment. But as the saying goes, information is power, and my avoidance probably created more anxiety about the unknown.
In June of 2009, our country was knee-deep in the recession, the worst economic crisis since the 1930s. Despite that, Will and I were trying to determine what our next stage in life would look like. After going back and forth about where we wanted to settle, we decided to stay put in Chicago. We met with a realtor and looked at what felt like a hundred small Chicago condos over the course of a couple of months. Finally, we made an offer on a cute 1000-square-foot space in a great neighborhood. There was a coffee shop across the street and the El Train was just steps away. After a couple of rounds of offers, our relator called to share the great news our latest offer had been accepted.
It was time to celebrate! We were both buzzing with excitement (okay, and also some wine). It was a Sunday evening in late summer. The TV cast a comforting glow throughout the living room. As we were daydreaming about furniture and paint colors, it dawned on me that my period might be late. I thought for a minute. No, my period was definitely late.
I decided to put my anxiety at ease by taking a pregnancy test. I figured once I got that negative test, I’d resume my cuddling and drinking and go on with my night. Slightly tipsy, I forced myself to get up from my comfy spot on the couch and rummage through the medicine cabinet to find the box of pregnancy tests I’d purchased months ago. I carefully set my stemless wine glass, filled with a crisp Pino Grigio, on the back of the toilet. I sat down, peed on the stick, and set the test on the counter while I waited for the results. It quickly became obvious that the results of the test were positive.
A positive pregnancy test. Sh*t. The person who took that test was indeed, pregnant. This must be a mistake. I ran to the cabinet and grabbed another test. The same two lines popped up that screamed, ‘Oh my god you’re pregnant! What are you going to do?’ The first thing I did was dump my wine down the sink and run to the living room to show Will.
It was a shock but we quickly adjusted to the idea of being pregnant. I’d married the right partner and chosen a solid educational path. I had just completed my master’s degree from Northwestern and was ready to start my career. In most ways, I had always done what was right and believed it be paying off. I even began to see this surprise pregnancy as an unexpected gift. Thank god we didn’t have to spend months and months trying to get pregnant. In fact, life was starting to feel exactly how I envisioned it. I felt I had somehow earned this goodness in life. I was ready to take on full adulthood.
While pregnant, I followed all the advice given to me: avoid lunch meat unless it was heated in the microwave, no raw fish, and absolutely not even a touch of wine or alcohol (after that first day of discovering I was pregnant, of course). I made sure to take my daily prenatal vitamin and even read a book on real food and learned the importance of a nourishing diet during pregnancy and postpartum. My copy of What to Expect When You’re Expecting was underlined, dog-eared, and highlighted. I did prenatal yoga and stayed active. Postpartum was already on my mind, as I was determined to bounce back after pregnancy and get my pre-pregnancy body back as soon as possible. Breastfeeding was a must, and I was committed to doing whatever it took to have a successful nursing relationship with my child. Absolutely no formula would be given to my baby. I had even found a daycare close to my work so my baby could be nursed on my lunch break.
The pregnancy was progressing smoothly until I was 30 weeks pregnant. I started having frequent contractions. After calling my doctor we went to the hospital to be checked out.
The doctor squirted cold gel onto my exposed belly and pushed down to get a clear view, one hand on the ultrasound wand, the other on his keyboard. He was quiet for a moment as he entered measurements into the computer.
‘Has anyone told you that you have a lot of amniotic fluid?’ he asked calmly, eyes on his computer.
‘No,’ I responded.
‘Well, you do. A lot of amniotic fluid. Your baby looks fine. Heartbeat is strong. Let’s see here.’ He paused and clicked his mouse to take a measurement. ‘Your fluid is double what it should be.’ The doctor took a deep breath and shook his head slightly. His eyes met mine.
‘It’s called polyhydramnios. In about 60% of cases, it’s idiopathic.’
‘What does that mean?’ I asked.
‘It means there’s no known cause,’ the doctor explained.
‘Okay, so what’s the other 40%?’
‘It might be indicative of an issue with the kidneys or other types of problems. The baby usually drinks the amniotic fluid, so for some reason, your baby might not be drinking it. This isn’t necessarily a sign of something wrong, but it could lead to preterm labor.’
I took a deep breath. Alright. That didn’t sound that bad, right? It could be much worse. In 60% of cases, nothing was wrong. I was certain I was in the majority. The doctor went on to explain I should be on bed rest moving forward and would need to come in for weekly ultrasounds.
As my pregnancy progressed, more issues arose. I found myself going back to What to Expect When You’re Expecting to read the chapter called ‘The Complicated Pregnancy’ (conveniently located between the chapters ‘If You Have a Chronic Condition’ and ‘Coping with A Pregnancy Loss’). I can only assume most people don’t make it to those chapters because they simply don’t apply to their pregnancy.
Unfortunately for me, the baby was measuring small, lack of blood flow to the placenta was concerning, my contractions continued, and there were times where I couldn’t feel the baby move. All of these seemingly random problems led the doctor to induce me at 36 weeks. I specifically recall the doctor saying, ‘We think baby will be safer outside of the womb rather than inside.’
It’s April of 2021. Asher turns 12 on Friday. Birthdays can be hard. They serve as a yearly reminder of the things he will never do. He’s in 6th grade now in a wonderful special education classroom in Chicago Public Schools. Asher loves Elmo, Young Sheldon, taking walks, and his dog, Pearl. We’ve navigated years of physical, occupational, and speech therapy, countless specialists, hospital stays, and many, many sleepless nights.
There are days where I feel such rage about his diagnosis. I never asked to be a parent to a child with a disability. Underneath the rage is deep sadness and grief for what he’s missed out on. I didn’t fully access my grief until I gave birth to my second son and discovered how much easier parenting could be. Another wave of grief came when we had our third son, and again, realized what it’s like to birth and parent a child who does not have a disability.
I took 3 years off from working as a marriage and family therapist to be a stay-at-home parent and manage Asher’s care full time. I slowly returned to my career and eventually opened up a group practice. I’m grateful for my job and the ability to help other people who are facing challenges in their life. My own experience with Asher has given me perspective on suffering and the ability to more fully empathize with my clients.
I am daily reminded of the hard emotions we face when parenting a child with a disability. As parents, we can feel anger, sadness, and guilt and still love our child unconditionally. It’s okay to desperately need a break from parenting. We need to be reminded we’re doing a good job and deserve to take a break. The world doesn’t always approve of our more complicated emotions and parents often feel hesitant to openly express their grief. What I know to be true is you can grieve your child’s diagnosis and still be an amazing parent. I’m certainly no expert, but 12 years into this gig, I can confidently say parenting a child with a disability is not for the faint of heart. It can be beautiful, but it can also be very hard.
What has become clear, and most comforting of all, is knowing I’m not alone. There are many parents out there who are going through a similar situation. If you happen to be one of them and are searching for permission to acknowledge your grief and anger — permission granted. You are not alone.”
This story was submitted to Love What Matters by Amanda Griffith-Atkins from Chicago, Illinois. You can follow their journey on Instagram, Facebook, and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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