Charlotte Moore, a British journalist and author, wrote a fascinating book called George & Sam: Two Boys, One Family, and Autism. In it, she describes coming to terms with the autism that affects two of her three sons and releasing the expectations of a cure, of some sort of full recovery, of finding the typically developed child buried deep within each of her boys. The book isn’t an argument for hopelessness, though. Instead, Moore explains she’d rather spend her time accepting and treating the symptoms of her sons as they are right now and providing the best life she can for them now, rather than focus on some obscure future that may never occur for them.
I don’t have children on the autism spectrum, but reaching this passage in Moore’s book felt like reading about myself. When I discovered in the spring of 2001 that my daughter has a chronic, probably lifelong respiratory disorder, I had to adapt to the life I had, not fixate on the one I’d expected.
It took longer than it should have.
We idealize the childhood experience, and like most new parents I planned a beautiful life for my new baby girl, all rainbows and butterflies and cotton candy and sunshine. Every parent has to give up that perfect vision sooner and later, of course, but discovering a child has a chronic health problem means facing a more abrupt transition to reality.
When my daughter’s pediatrician first told me he suspected asthma, my internal dialogue went something like this:
Mr. Asthma Mom and I never even considered connecting her constant colds and coughs to a lifelong respiratory problem. With no asthma ourselves and no family history of it, why would we?
To understand and truly accept that your young child may always suffer from breathing problems, even though asthma is very treatable, takes an enormous adjustment in thought, and I wasn’t prepared to make it. While I obsessed, constantly, about WHY she developed asthma and HOW this could happen to her/me/us and the UNFAIRNESS OF IT ALL, I never once took a breath and told myself,
“Okay. This is what you thought would happen when you had children. This is what’s happening instead. Let’s figure out how to deal with it.”
Instead I felt, irrationally, that if I treated her as a “healthy” child, then she would be one. Makes total sense, right?
Don’t worry, she did use a nebulizer back then, but I denied the seriousness of her asthma, learned almost nothing about it, and therefore did not compose a maintenance plan with her doctor.
Right up until the fall of 2003, when a month of cycling, severe flaring prompted by a respiratory virus led to multiple ER visits, several bursts of prednisone, and, finally, hospitalization and oxygen therapy for double pneumonia at age four.
That terrible month marked the chasm between my obliviousness and my advocacy, and I started researching how to protect and improve my daughter’s breathing and prevent flares, the way I should have in the first place. The irony – and my shame – is that I fixated so hard on the vision of perfect health that I expected for her, I failed to learn about prevention and maintenance, two concepts that would have inched her early childhood closer to that very ideal, only with a little help.
My daughter has experienced a rich, full life and a healthy childhood so far – it just takes some extra vigilance and effort, that’s all.
It’s been 10 years, and the foundation of all I learned about asthma started with this first lesson:
Do not look for the perfectly “healthy” child hidden within your asthmatic daughter. She doesn’t exist. Focus on raising your child with the lungs she has, not the ones you wish she had.