“Your daughter’s MRI shows agenesis of the corpus callosum”…..the words rang in my ears for quite some time before I could even focus on anything else the paediatrician was saying. I was actually at a Sleep School visit when the doctor tracked me down with the results. I was sleep deprived and desperate for information about why my beautiful child was not achieving her milestone and why oh why for mercy’s sake will this child not sleep! What am I doing wrong? I didn’t know how I would tell my husband about this new diagnosis. I didn’t know what to tell him. I had to Google the result before I could even begin to figure out how to help him process the information. What I found was a lot of vague references to the possible effects a person with corpus callosum disorder may or may not experience. It was confusing and scary. I felt completely out of my depth so I did the only thing I knew to do – read. Ask questions. Read articles. Research. Google. Library. Medical journals. And then I found the American Listserv and from there I was contacted by someone directing me to a small Facebook group in Australia. And here we are.  (on a side note, Aggie has hypoplasia of the corpus callosum – not full agenesis as we were first informed). Once I had immersed myself in the information I felt ok about it. There was hope. I dusted myself off. There is work to be done here. No-one could tell me what she would or wouldn’t be able to do. I took that in my stride. My husband, on the other hand, fell apart. He was really sad and really angry. He grieved for what he perceived he had lost. We were already feeling our Disorder of the Corpus Callosum.

Our Aggie is almost 6 now. She, her almost 3 year old sister Harrie and my husband, Christopher, are the light in my life. My great love. My sunshine. My journey. My challenge and my passion. As the mother of a child with different needs, I know other parents will relate to my moments of grief, fear, loneliness, blame, immense responsibility, desperation, hope and joy and all the extremes of emotions we experience along that spectrum.

Sometimes I would experience most of these on a daily basis. I truly do embrace this journey and I love my life (and coffee) and I love to announce to the world that our family has a Disorder of the Corpus Callosum – in the context that we are sharing the journey together and experience how we navigate this both individually and collectively under the umbrella that is her diagnostic banner – as a family.

We have to do things differently from families where there is no family member of different abilities. We don’t go out with the kids at night. We have strict routines around getting ready to go out, or go to bed. We have limited food choices based on her medical needs.

We spend lots of money on medication. We spend our spare time doing therapy. We have to make choices about walking aids and AFOs. We often spend more time at appointments than we do at the park. We have sensory needs that we must consider in any and all situations. It’s hard to buy her gifts. We have a support worker in our house. School is challenging – just finding one is harder than it should be etc. etc. etc. and all these things affect every person in this house.

 

We also gratefully share in the joy of this amazing small human. I marvel at how amazingly she has adapted, given her physical challenges. She is a fantastic example to all of us about how to get on in life. She has the most incredible infectious smile and generally happy demeanor. Her educational psychologist described her strength as being “her likeability”. Her progression is slow and insidious – but in our house, we are all equal measures of pushy and patient. We all get excited over the little things – the little improvements – the milestones. We all benefit from her crazy dark sense of humor and her lustful enjoyment of chocolate and music (Taylor Swift, ‘Shake it off’ … on repeat). We don’t like to use the word “disabled” in our house – we do use it because it is relatable for most other people and they understand its concept but to me the word signifies an end, not a journey. It’s a finite word. Aggie is not finished. By no way is she done. She is not disabled. The condition may be “disabling” – but a cold or flu can also be disabling for a period of time (especially the man flu variety). We like to use terms like “almost able” and “different abilities”. Our youngest tells people, “Aggie has a different brain,” and “We are all special people.” I love that about her.

We are all in it for the sleepless nights, the frustration of being non-verbal and the other medical conditions which complicate her very existence. She learns. She feels. She laughs. She hurts. She loves. We all do. That’s why our entire family has a Disorder of the Corpus Callosum.

Lisa McNally – Mother of Aggie