by Julie Miller
Approximately two years ago I was shown a wonderful article entitled “Welcome to Holland” by Emily Perl Kingsley. In it, she discusses her journey into the unknown by comparing her expectation of a trip to Italy (the birth of a healthy child) with an unanticipated arrival in Holland (the birth of a child with a disability). This article resonated so well with me because my experience was just that, an unanticipated arrival into Holland. However wonderful Holland might be, it just wasn’t Italy.
My eldest child, a son, is completely healthy. He was born at 8lbs 15oz with a rock for a head; sturdy, strong, and though he took his time reaching many of the developmental milestones, I now know that has more to do with his personality.
My daughter, born 19 months later, took us on an unexpected rollercoaster ride right from the get-go. After several hospital stays requiring the use of supplemental oxygen, a CT scan of her lungs revealed a rare interstitial lung disease called Neuroendocrine Hyperplasia of Infancy (NEHI). At just four months of age, my daughter was placed on home oxygen to maintain accurate oxygen saturations. My little girl was struggling to breathe, to eat, to gain weight all because, “she is running a marathon every single day,” as our pediatrician so eloquently stated.
And so began our journey into the unknown.
Questions Early in the Journey
How long will she be on oxygen? Will it get worse or better? Can she be around other kids? What if she catches the flu or pneumonia? Is every illness no matter how minute going to result in a hospital stay?
The questions danced around my head, questions not even the lung specialist could answer because the disease is so rare and every child diagnosed with it presents differently. In addition to her lung disease, her development was quite delayed. At first, I thought she was following in the steps of her big brother; however, as time went on, I knew deep down that something wasn’t right. She didn’t sit until 11 months, she crawled at 12 months, and she walked at 22 months. All the while, the doctors kept telling us that her body was focusing all its energy on her lungs. Sounds logical, right?
Was it also right that my two-year-old didn’t speak? Was it also right that my two-year-old couldn’t feed herself with a spoon or fork? Was it also right that my two-year-old would never look us in the eyes? Was it also right that my two-year-old would sit for hours pushing blades of grass through a fence? Her physiotherapist, occupational therapist, speech therapist, and pediatrician all still suggested that she would catch up in her own time and that her lungs needed all the energy she had.
Slowly, as she aged, the answers to our initial questions about her lung disease became clear. We were some of the “lucky” ones. Oddly, she was rarely sick. Her daytime use of oxygen diminished starting at age three and was altogether gone by age four, though she still remains on nighttime use. She has attended daycare and preschool with little recourse.
We no longer had to follow alongside her with oxygen tubing, or her “leash” so to speak. We no longer had to endure the stares at the park or at the mall or at the grocery store asking why was this little girl on oxygen. Nighttime oxygen is easy after three years of daytime oxygen tubing getting caught around chairs, under couches, or creating a tripping hazard as she moved around the house. We were elated that this period in her life and our lives was over.
Questions as Early Childhood Ends
However, after much pushing for further assessment due to delayed development, my daughter was diagnosed with Autism and Global Developmental Delay at age 3.5. A whole slew of new questions entered my head. Will she ever talk was the biggest one, because at age 3.5 she still had no vocabulary. Will she ever hold a crayon to draw or write? Will she ever toilet train? Will she go to school? How many more appointments are we going to have now? And more selfishly, will I ever go back to work and trust her in the care of someone else?
Will my husband and I ever regain some semblance of normalcy in our lives? Will I ever accept the hand we’ve been dealt?
Will I ever accept that our flight to Italy landed in Holland?
My daughter is now five years old. She has successfully completed two years of early intervention behavioral autism therapy; 15 hours a week plus biweekly occupational therapy, physiotherapy and speech therapy appointments. She talks fairly well though definitely not at her age level. She is not toilet trained despite a couple attempts, and she’s only now learning to write due to struggles with the strength to hold a pencil and to make shapes. She cannot dress herself.
I have not turned a blind eye to all the massive accomplishments she has made over the last two years; however, with kindergarten around the corner, more questions arise. Will she ever read? Will she have meltdowns and scream in class? With all the germs/viruses she’ll be exposed to, will she need to resume her daytime oxygen use? Will she be bullied or made fun of because she is not yet toilet trained? Will she walk off the playground in search of something more interesting during recess?
I feel like school is the beginning of the end. In general, you go to school for 12 years and then you progress into college or university, you get a job, you work until you are 65 years old and then you retire. What if she doesn’t finish school? What if she can’t get a job? What if she has to live with us into our old age because she can’t function well enough on her own? What happens when we die? The questions don’t stop. They are endless and they are constantly circulating around my head draining me of all my energy.
In reality, the unknown is no different when I look into the future of my boys; we had a third healthy child 2.5 years after my daughter was born. However, the difference is they face no additional challenges at this point in time. The world is their oyster. I know and have faith they will do just fine in their lives. They are very smart, inquisitive little creatures with a big world ahead of them to explore.
I wish I had the same faith in my daughter. Have I accepted that my child is different? Have I accepted that her life will forever be more difficult than for her brothers? Have I accepted that our lives will never quite be the same? The answer quite simply is no.
My daughter is very smart in her own way—she is lovable and full of cuddles, she is funny, she is beautiful and is full of joy.
But she is not the Pantheon, she is a Windmill.