The Moment Things Change

I remember the day that Isaac's diagnosis was given to us over the phone. It was unexpected even though there had been problems that had landed us at the specialists' offices and doing a CAT scan and micro array genetic tests.

I remember the days that each specialist signed off and told us we no longer needed follow up.

What is harder to pinpoint are the days leading up. Isaac is getting healthier every day, but it is a slow process and harder to see day by day.

Last night while nursing him to sleep I reach down to tuck him in and noticed that his legs are getting chubby and thick, almost muscular. His belly is squishy. While other toddlers slim out when they start walking, Isaac seems to be filling out instead, building strength and making him more steady day by day. Last night wasn't the first night I squished at him, but it was the first time I realised what good this means.

He grew 2.5 inches since February. Gained 3 lbs. He's walking now. This morning, even though it wasn't spoken clearly, Isaac said, "Move please Lily," and, "Here is this Daddy!". He's beginning to try to vocalise sentences even if it sounds like babble to us. He is signing about 20 new signs in the last 3 weeks.

These things are good things, progress, but slow progress. This progress is what we lean on when we start to get discouraged.

These things are too easy to forget when the pressure is put on us by doctors in offices that only see our kid for moments of their lives once or twice a year, trotting out the catch phrase, "impaired cognitive development," when parents question any recommendation. I was thrown that phrase when Isaac's iron levels were sort of low (but not for a breastfed baby) and when he was diagnosed as deaf. The second time doused me with cold water. Deafness impairs cognitive ability? I seriously doubt the med student and  doctor would dare say that to my blogger friend Mare or any number of deaf adults I have encountered in my academic career both as a student and professor.

It was those experiences that knocked the sense into me in that moment. They were recommending an expensive surgery to place tubes, a surgery that was not guaranteed to work, not without risk both short term and long term, and the main argument for doing it was cognitive impairment since Isaac has never had discomfort or infection (both are valid reasons to do surgery, in my opinion, but Isaac had neither).

I asked for time to think about it, time to look into other options and also look into price points of different surgical centres.

In the time I gifted my son, I learned a lot of different things. I learned that kids can outgrow the fluid issue, that NUCCA chiropractic care was inexpensive and effective specifically for this kind of deafness, and that surgical centres not only vary wildly in price, they are not used to being asked about costs because hardly anyone price point shops. In addition, they vary in how competent their support staff is and how well they understand genetic conditions.

So when I forget or get caught up in the day to day mundane of Isaac's wonderful progress, I remind myself of his laugh, his strong body, his sense of humour, and all the work we have all done to bask in the glow of his health.

These days are not each as heartbreaking or as shocking as those first days of diagnosis, but even though they are small and beautiful and gentle on our hearts, they bring the change that we have been waiting for. They herald calm waters, sunny days, and we can settle in and enjoy our family.