A few months ago, I wrote a piece called ‘Undiagnosed’. In it, I relate the struggles my son Isaac has faced, as well as the challenge for Isaac’s mother and I have in staying positive without ever getting a real diagnosis for him.
This is an update to that article.
A little over a month ago, Heather took Isaac to see our family’s pediatric neurologist. We decided that it was worth a visit, to see if perhaps he had any ideas on how we could help Isaac with his needs. Our neuro suggested a three-pronged approach.
First, we would start Isaac on a regime of vitamin-D, as blood work indicated Isaac’s was a little low, and might be contributing to his speech delays. Second, we would get a brain MRI for Isaac, just to ensure everything was structurally complete. Finally, we would have Isaac take an EEG test, to ensure that his brain waves didn’t indicate any problems.
Within a week of getting the vitamin-D, Isaac’s speech had improved so dramatically that his speech therapist almost cried! I can’t begin to express the joy our family experienced celebrating this turning point with Isaac. He has worked so hard to get to this point, and although we still have a ways to go, we can see the end result approaching, and more importantly, he can too and it is motivating him to try even harder. These past few weeks are a testament to the long hours Heather spent doing speech homework with Isaac. Despite that, at our neuro’s suggestion, we still kept our appointment for the MRI.
We got the results from the MRI yesterday. The MRI revealed that Isaac has a condition known as Chiari Type I Malformation.
We finally know why my son is having struggles in many areas. A Chiari I malformation can lead to speech delays, motor delays, digestive issues, mood swings and many others. Isaac deals with many of these issues, and yet, until yesterday, we never had an answer.
Today, we are celebrating the discovery of Isaac’s Chiari malformation. Not because he has a structural problem that has caused him a great deal of suffering, but because with knowing, we can begin mapping out a strategy to hep Isaac best overcome the challenges associated with a Chiari malformation. The condition cannot be cured, but we can now better focus our therapeutic efforts to assist Isaac in the most targeted way.
When we first told Isaac this news, he smiled from ear to ear. He has always wanted a ‘Magic Brain’ like his older brother Tim, and until yesterday, as far as we knew, he didn’t have one. But today, Isaac gets to feel as special as Tim, because now he has a ‘Magic Brain’ of his own. This diagnosis has been like the sun breaking through the clouds on a gloomy day. We finally feel like we can fully address Isaac’s needs, and can finally give him the support that he deserves. Today, I feel like I can be a better dad than I was yesterday because I can be more responsive to Isaac. Heather and I also feel relief because this diagnosis means that we weren’t failing Isaac, but simply didn’t have all the information necessary.
It has been a blessing to be able to look at Isaac, and see the progress he has already made, and dream of what is to come. I used to worry if Isaac would be able to keep up with his peers socially, but now I know we can work with Isaac to expand his horizons. I used to worry that Isaac might lead a limited life, but now I believe that Isaac will be able lead exactly the kind of life that he chooses.
Diagnoses can be scary, but they can also be empowering. Learning that Isaac has a Chiari Type I Malformation has been a big blessing to our family, and today, I am reminded of the old phrase, “knowledge is power.”
Right about now, I’m feeling pretty powerful.
As the proud father of three children, as well as an MFA graduate and published author, John spends most of his time trying to balance the demands of being a writer and a parent all at once. Most of the time, it’s an uphill battle. As the parent of a child with special needs, John tries to use his talent for writing to bring inspiration and hope to his readers.
For more information about John Will you can visit his website at the Writing Dad, Here and Facebook page Here.
Cover Photo: Aad Goudappel