My Name Is Julie, and I’m a Recovering Special Needs Mom

My name is Julie, and I’m a recovering special needs mom.

As a recovering special needs mom, I overreact to all medical events, no matter how minor. I try to solve unsolvable medical mysteries. I’ve put off my own annual medical appointments and simple, minor dental procedures for years because of my debilitating fear of having another life-changing diagnosis. When a preschool teacher mentions that my healthy son might have a minor developmental disorder, I immediately go home and Google life expectancy for children with this diagnosis (that he hasn’t even received yet.) Yeah, it’s bad.

I have post-traumatic stress disorder, I am a recovering special needs mom, and I am always waiting for the next tragedy or the next life-altering event that will turn my world completely upside down, again.  

My daughter, Ella, was born in February 2003. She had a severe form of cerebral palsy because of a birth injury. She was a spastic quadriplegic. Spastic quadriplegia affects all four limbs (both arms and legs). Ella was never able to walk or talk or do anything for herself. I witnessed as Ella struggled for every breath. I watched as she failed to grow and thrive. I was part of each and every day of her difficult life. Each day presented a gigantic hurtle that I struggled to climb just to get over and on to the next day to repeat the struggle again. It was hard, unbelievably hard, bone-numbing hard. My husband and I were exhausted all the time.

Each and every day of Ella’s daily life was about keeping Ella alive, literally, alive.

Feeding, diapering, keeping her clean and out of harm’s way were daily tasks far, far beyond her infancy. On top of daily maintenance for Ella, my husband and I spent hours each day with her at various therapists or doctors appointments or performing the rehabilitative therapies on Ella ourselves.

Ella died at the age of 11, after a long year of illness which put her in and out of the hospital for weeks at a time. Since her death, I’ve been actively working on healing my tired body, wounded heart and defeated soul from her traumatic birth, 11 years of caregiving, and her long illness and death.

My trauma has surfaced in many ways since Ella passed away. I’ve neglected my own health for years because of my fear of some looming diagnosis. I’m obsessively protective over my healthy 3-year-old son’s well-being. When my son’s preschool teachers mention any issues with his behavior, I spiral into a frenzy of trying to, “Fix his problem.” When the teacher mentioned a possible sensory issue because he wouldn’t wear his coat, I called the doctor, Googled information, and hounded my husband about possible solutions. Finally, I asked my son why he didn’t wear his coat. He told me he wasn’t cold. I explained to him that he needed to wear it as the weather gets colder. He said, “Ok,” and has worn it ever since.

One day, when I picked him up from camp, a counselor kindly asked if I could speak to my son about wandering away from the group. I left the camp and started to spin. I called my husband to brainstorm ideas for solving this recent “problem.”

Then, all of a sudden, I stopped in my tracks. I’m a wanderer! I’m a loner! If I had a choice, I would prefer to be by myself. I have spent my whole life working hard not to follow any groups. This is not a problem and doesn’t need to be solved. For me, defining “normal” 3-year-old behavior versus true special needs is tricky.

I raised a child with very clear, in your face, special needs and feel that it may be possible that I’m quick to label and pathologize my kid who is just being a “normal’, wonderfully weird 3-year-old.

Sometimes, I don’t want to wear a heavy coat, my husband hates to get his hands dirty and loud noises bother me. I’m aware that sometimes these sensory issues can cause long-term effects, however worrying about that when my kid is young is a waste of precious time when I could be enjoying his beautiful, complex weirdness.

When Ella was 6 months old, I took her to a developmental specialist at Johns Hopkins Hospital. I was fragile, weak and in a constant state of weeping. The doctor examined Ella and explained that her needs were great and her disability was very severe.

He then looked me in my constantly leaking eyes and said, “She’s a baby, a beautiful baby, love her, enjoy her, you will never get this time back.”

I left his office, went home and sat on the couch with Ella in my arms and looked into her beautiful, soulful eyes for over an hour. I sang to her and spoke very little, mostly I just looked at this amazing being who had struggled so very hard to be alive and grace my life with her presence. This was one of many turning points for me as Ella’s mom.

Of course, I still spent most of my time trying to solve her many medical problems.  However, I always had the words of that wise doctor in the back of my mind and made a point to connect with Ella in a loving way each and every day of her short life. These are the memories I cherish the most. The moments when I appreciated Ella as my beautiful precious child, a divine gift, and not a problem I needed to solve.

I’m not a nurse, physical therapist, speech therapist, occupational therapist, human rights activist, fierce advocate or any of the other things special needs parents are asked to be. I filled all of these roles and more, but fundamentally, I’m just Ella’s mom and I’m so proud and happy that I took time to enjoy that.   

The journey of a special needs parent is by far one of the hardest things I’ve ever experienced in this life and it has changed me in ways I’m sure I haven’t even fully discovered. My heart has scars and wounds that will likely never recover. I may never be able to visit a doctor’s office without my blood pressure elevating just a bit. But through this extraordinary experience, I learned to stop, look around and appreciate this wild, weird and wonderful life and all the oddities in it.

My vow as a recovering special needs mom is to deal with issues parenting my “normally developing child” as he grows. I will not let issues or diagnoses consume me, nor will I crusade to solve them and spin so far out of control that I miss the child, the kid, the tiny human that’s developing and figuring out the world right in front of my eyes. I will always recognize the opportunity to relish in my kid’s wonderful, wild, unique weirdness. I will try my best to relax and enjoy the rollercoaster ride of parenthood.