A Mom Blog Social Network
In a recent post I talked about my son and two other boys, all who have been affected by encephalitis. I promised that I would post pictures and updates so that you could meet them and I am excited to be doing that this evening.
While all three of the boys were sick with encephalitis when then were younger, they each suffer from lasting effects of the disease. Each one was left with an area of their brain that was either damaged from the seizures or has scarring that now affects one or more areas of their lives. They have what is known as an ABI (acquired brain injury).
Encephalitis is one of those cruel diseases that one appears to recover from, on the outside, but the damage is done on the inside, it is hidden which makes it difficult for some people to understand their issues. There are very few signs that these boys were all very sick at one time. They may have stiffness in a limb, some speech difficulties, but from all outward appearances each of them seemed to recover very well.
It is the hidden affects that make life frustrating for them as they try to keep up with their peers in sports or in studies only to realize that they have to try harder than their friends. It is the loss of memory and short term memory issues that makes learning difficult and keeps them behind their classmates. It is their forgetting what they want to say, or their difficulty in communicating that makes it hard for others to always be patient with them.
The fact that the damage is not always visible like a broken limb makes it difficult for us as their parents to try and communicate with teachers, caretakers or the parents of their peers that while these boys look like the other boys in their class or play group, their brain is not like the others. It is the hidden damage that breaks our hearts as their parents as we see the boys struggle and sometimes fail. It is also the reason that we work so hard to fight for them to have the right to a proper education and encourage them to work as hard as they need to in order see them accomplish their goals.
These are our boys, and while I have never met Harry or Ibai, I feel as if I have. I know their stories and how similar they are to my son's. I have heard the heart of their parents and I have shared in their joys and in their setbacks. We are connected by more than just encephalitis, we are connected by the dreams we have for our boys to overcome their obstacles.
You have met my son in my blog, so I won't spend a lot of time on his story. After Colton left the hospital he had to be weaned from seizure medication, relearn to walk, talk and feed himself. He suffers from short term memory issues, which include forgetting what he wants to say as well as forgetting conversations. He has very little feeling in fingertips of his left hand which makes buttoning clothes and tying his shoes difficult. He also suffers from a learning disability. His report card shows that while he is making some progress he is a year behind his peers. According to the state testing standards he is low to low average. These facts do not define who he is as a person. He is funny, he loves fishing and he is becoming quite the little baseball player.
Ibai is from Spain and is just a year younger than my son. His parents connected with me through the Inspire website and sent me a personal email, I am so glad they did! Ibai was sick about the same time as my son was and suffered many of the same issues, seizures and having to relearn things as well. Ibai also has difficulties with communication and some motor skills issues, especially on his left side. He also has had some difficulty in school. Recently he had a set back and had to be admitted to the hospital. We are praying for him that he makes a quick recovery and is able to enjoy an upcoming vacation that his family has planned. (Where they are going actually makes me a bit jealous!) As with Colton, Ibai's difficulties do not define who he is a person. He enjoys sports and recently gave his first piano recital!
Harry is from the United Kingdom, I met his dad through the hashtag #Encephalitis on Twitter. As we shared stories we realized how much our boys have in common. Harry is a few years older than Colton and Ibai and was a bit older than the other 2 when he got sick but his story is very similar. Encephalitis has left him with difficulty with his speech, learning disabilities and he too has problems with motor skills on his one side. His passion is football, his team is the Derby County Football Club (for us Americans, that would be soccer!). Fishing is his other passion. Harry enjoys gardening and has a wicked sense of humor that often gets his family laughing until they cry!
Thank you for letting me introduce these handsome boys to you. Harry and Ibai have become part of our story and you will hear about them from time to time. I share their story with you so that you might keep them in your thoughts and prayers. These boys are walking down their own right turn lane and at times it will be a very bumpy road. They have great family support now that they are young, but as they get older, their journey will be one that they have to navigate for themselves. It is our goal as their parents to give them all they need to complete that journey successfully.