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Answering the Hardest Question of All

 

From:"Connie Lee" info@Angioma.org
Sent: May 6, 2008

When our daughter Julia was 4 months old, my husband John and I found ourselves driving our baby to our local Children’s Hospital for what I thought was a bad flu. Instead, we wound up sitting in radiology listening to the doctor tell us the unimaginable: “Your daughter’s brain is full of tumors, and she must have surgery today.” She was dying.

That was the moment that changed my mothering, my life. The tumors turned out not to be cancer, but cavernous angiomas. I had never heard of cavernous angiomas but quickly got the short course about abnormal blood vessels, hemorrhages, etc. This was good news and bad news. The good news was that Julia would not need chemo or radiation. The bad news was that this is an illness that would never end.

Since that day, Julia has been through four brain surgeries, come back from partial paralysis, a seizure disorder, severe fine motor deficits, and what could only be described as the horror of these hospitalizations, recoveries, constant tests, and therapies.

As her mother, I’ve had to hold her down during painful procedures. I, along with John, have had to hand her to surgeons knowing exactly what was going to happen to her.

I have had to try to answer the hardest question of all: “Mommy…why?”

I can not take this away from her today. But, I’ve chosen not to surrender to the helplessness. When Julia was 3, I worried that she would never meet another child with cavernous angiomas. There were no patient organizations, no support groups, very little basic information on the internet. I could not let this be her future. I founded Angioma Alliance as a way to meet others with the illness and as a way to get good information out to the world. What I didn’t know then was how much this was needed, and what it would start. My little website has turned into an international organization bringing together families, researchers, doctors and government so that maybe one day, Julia and I won’t have to worry about when those time bombs in her brain are going to go off.

I’ve had many people say to me about her, “If you hadn’t told me, I wouldn’t have been able to tell.” I’m not sure how I feel about this as I’m not sure it acknowledges the reality and impact of her experience. But, it is certainly better than the children who have of late taken to calling her “crazy” or the mothers on the playground who whisper that her apparent lack of socialization is a reflection of poor parenting. Sometimes I confront and educate when I hear these things; sometimes, I am just too tired. Every time, I am grateful for the families who have opened up their hearts and homes to her with love and acceptance.

Each morning, I walk into Julia’s room with a shadow of anxiety following me, and I breathe and rejoice when I am able to wake her. Each day, I rejoice when she’s made it through school, when we read together, when we laugh. She infuriates me and fills me with pride. She is impulsive, inattentive, inappropriate. She is fiercely accepting, honest, forthright, and fearless. She’s been featured in newspapers, magazines, videos, a book, and on TV, but she has no understanding of how much her young life has affected the world.

This is not the mothering experience I had expected. It is not one I would wish on others. But, there is poignancy to my relationship with Julia that could only have been born out of our deepest recognition of its fragility. When I look at her with my heart, along with our love, I see the tears of the past and the tears that are likely still to come. But today, today, she is happy. Today, I am allowed to be Julia’s mother...and that is everything.

Connie Lee
info@Angioma.org