This is part one of a series where Heather shares her story of being a mother of two daughters with chronic illness.
Motherhood is something I deeply wanted. I wanted to fill my house up with little people. I imagined being surrounded by children who looked like my husband and me, and listening to all of the noise they would make in our house. I was blessed with two amazing daughters 26 months apart.
I wish I could fill pages with how motherhood came naturally to me and how I was a great and relaxed mom. But that's not my story. Pregnancy was hard and filled with trips to the hospital. Deliveries weren’t as planned and ended in c-sections. I wasn't a natural mother. Sacrifice came hard to my selfish heart. Postpartum depression ravaged the early years of motherhood making them nearly unbearable.
But at the end of every day there were these two little baby girls who I’d known from the moment they were conceived. They had felt my heart beat from the inside, and I was blessed enough to share a connection with them that was deeper than any connection I could have imagined.
Life doesn't generally go as we plan it.
So often when a woman is pregnant we hear the words “The sex of the baby doesn’t matter as long as it’s healthy.” We don't think about those words. They seem like good words. They seem like hopeful words. We are hoping for a healthy baby. We hope for healthy children. More than that, we plan on having healthy children. We plan for healthy children so much that we don’t consider the other side of “as long as it’s healthy.” What if your child is not healthy? What does that saying mean then? When a person has unhealthy children that saying starts to feel superstitious. It seems like something murmured to ward off bad spirits. It feels comparable to sayings “don't speak ill of the dead” and “step on a crack and break your mother’s back.”
How do I know? I know because my beautiful, smart, feisty daughters both have chronic illnesses and early onset mental illness. I didn't get healthy babies. I don’t have healthy children. When I hear a person say “I don’t care what the sex is as long as it’s healthy” my heart feels a sharp pinch and my breath catches in my throat.
The events I’ve faced with my girls are events that other people face. Not me. Not my children. The doctors, tests, diagnosis, hospital stays, and pain are things other people go through; not me, not my kids, not my family.
I have mixed feelings about sharing my daughters' stories. But their stories are my story and my story is their story. I read another blogger saying she hopes one day her children can share their perspective and their experiences of what has happened. That is my hope as well. These are my experiences and one day I hope my darling girls can share their experiences. I also know that in searching for those with similar experiences, they are far and few between. I want to share my experience in hopes that one day a mom with newly diagnosed or undiagnosed children will find it and find comfort of not being alone any more. We are not alone.
Their stories. Her Stories. Our stories. My Story. We are Kathy.
In college I read a book titled “Nobody Nowhere” by Donna Williams. It’s about a woman who is autistic and how she broke through the difficulties of her autism and became a functional adult, a Ph.D., and a writer. When I read this book I didn’t have a lot of experience with people with autism. I didn't have a lot of experience with much. I was 18 or 19. I remember thinking that autism would be the worst diagnosis a parent could get. I learned about the therapies involved and the time consuming teaching and parenting kids with autism would need. Even with all of that work some kids with autism remained locked in their own minds unable or unwilling to communicate with the outside world. The diagnosis seemed isolating and suffocating. It seemed hopeless to the 19-year-old me.
I knew from early on my oldest daughter, Jewel, wasn't like other children. She was so full of magic, energy, and surprise. She hit milestones early. She spoke in full sentences by 18 months. She started writing her letters at 2 years old and by 3 years old she could write her first name. We joked that she stopped being a baby at 18 months old because she was such a little person. Also by 3 years old she had started developing food sensitivities and being sick often due to those.
At 5 years old she had her first endoscopy and was diagnosed with eosinophilic esophagitis. The following 2 years were filled with endoscopes every 6 months, painful allergy testing every 12 months, rounds of steroids and more food allergies than I could count. I thought this was difficult, but it was actually preparing me for the real difficulty to come.
As a baby Jewel hadn’t ever been afraid to be left with anyone. She never had the typical separation anxiety that kids have at 6 months or 18 months. She was happy all the time. She was happy to be with me, she was happy to be with her grandparents, and she was happy to be left in the church nursery. At 7 years old she developed crippling separation anxiety. She started refusing to go to Sunday school and her homeschool co-op classes. When I would tuck her in at night she would cry and ask me to sleep with her. She would ask if I was leaving the house while she was sleeping. During the day she wanted to be in the same room as I was in all day long. If I went to the kitchen--she went with me. If I went to the bathroom--she was there. I went to Sunday school with her, or she came with me. I went to her co-op classes. On good days I could sit outside the door. On worse days she sat on my lap in class. She had always been such an independent little person and this was shocking to me. It was overwhelming and the demand she put on me was nearly unbearable.
Then the tantrums started.
Looking back I know she was afraid and exhausted. She was frustrated. But in those days I didn't understand what was happening. She would get so angry about normal life. If I ask her to make her bed or if we had to go somewhere, she would melt down into an hour long violent tantrum. Every time we got home from church or a class she was a part of she would tantrum. She broke furniture and put holes in walls. It got so bad we considered stopping taking her to church. It felt as if one night she went to bed herself and woke up the next day a different person. She felt it too.
Then the panic attacks started.
Throughout these experiences I often ask doctors that we encounter if they’ve personally witnessed a 7-year-old child (or younger) have a panic attack. Most of them say no. Witnessing a young child have a panic attack is one of the most unnerving experiences I have to date. I remember the first time I realized Jewel was having a panic attack. She was 7 and her sister was 5. I put them into the back seat of the car and ask Jewel to reach over and unlock my door while I walked around the back of the car. While I took those few steps she went into a full panic, convinced that she was suffocating because the car doors were closed and her and her sister were inside. She started beating on the driver side window and screaming while pressing her face to the glass. Her sister managed to reach around her and unlock the door. I opened it and Jewel fled the car hyperventilating convinced that there wasn't any air in the car. As someone who has panic attacks I realized right away this unreasonable fear was panic.
One night she was spending the night with her grandparents and she had a melt down. They called me to pick her up. As we drove home she said to me “Mom what's wrong with me? There's something wrong with my brain.” My heart broke. The next day I called the pediatrician.
I told the pediatrician about the things that were going on. I ask her to send us to a neuropsychologist for testing and evaluation. She was so kind and caring. She looked right into Jewel’s eyes and assured her everything was going to be ok. She told Jewel about her own anxiety. She told me Jewel didn't need a neuropsychologist but a psychiatrist. I was confused. But I knew this doctor. I’d known her for 7 years of Jewel life. I trust her. Studies show that parents trust their pediatricians more than they trust their partners when it comes to recommendations on child rearing. And I trusted her. She set up the appointment.
When I took Jewel to the first appointment she spent the hour drive screaming and kicking my seat as hard as she could. By the time we got to the appointment I was completely frazzled. My expectations for the appointment were that we would talk to the doctor and she would set up some testing. What I’ve learned since then is that psychiatrists don't do testing.
Psychiatrists prescribe medication; and that's what she did. My heart shattered to have a doctor prescribe psychiatric medication for my 7 year old. It felt like death. Even thinking about it now makes my heart ache and my stomach churn. Although the doctor said they don't like to “saddle” children with heavy diagnosis and so they treat the symptoms without a specific diagnosis, she did use the words “early onset mental illness” and “mood disorder.” I’ve since learned that only about 5% of children ages 2-8 years old have a diagnosed mental illness. Or about five in 100 children.
It was this day that I learned there's a diagnosis that feels worse, more isolating and more hopeless than autism; it’s childhood mental illness.