Not everyone goes through the same journey to become a mother for some the decision is made for them and others from a young age carry their ”babies”, they live and breath babies. At 18 years of age, I fell in love with this cuddly little boy. He’s my sister’s son and my godson. I love him more than life himself and he brought forward in me the need to someday being a mom. I remember him as a toddler, checking out my purse for what surprise I had hidden in there. The endless errands, my sister and I ran while he was in his stroller. the hours spent at the park and the interminable hours watching Barney. Thank Godness, my children never loved Barney but we had Caillou, so you decide which one is the less painful.
I knew that it would not be all roses and that there would be time that the only desire you had was to find the comfort of your own bed while you chase a rowdy toddler around the backyard. I do suspect that I thought like every other women that decides that she will be a Mother, that it was worth it. Please don’t misunderstand me on this. Motherhood is the most noble, rewarding and self fulfilling role in the entire world. It’s the only role, that you can learn as you teach and grow as they grow, be silly and strict and explore the world through the eyes of someone else that is just as precious to you than your own self.
Needless to say, I had never expected that our live would turn out to be like Dorothy’s in the Wizard of OZ as we follow a Yellow Brick Road to find the safety of a home and community that can support our family with a child that has different abilities, two traumatic brain injury, a society that needs to understands accessibility and inclusion and a family life that is balanced.
The next few blog post will be about beginning, my everyday, my challenges and my crazy thoughts.
Please come and join in my journey as a MommaBear.
It’s a few days before March Break and we have just been told that school will be cancelled for the next three weeks. My first thought is that this is every kids dream, and I’m seriously envious since kids are needing a break from school. I line up some more activities for them to do. Art for my daughter and coding for my son. I lined up a sitter for three weeks and never give it a second thought! It’s a cold virus, we will get over this, we are in prime flu season and two weeks out of the hopital for nerve palsy caused by Influenza B and my daughter’s brain injuries caused by acute necrotizing encephalopathy (ANE).
ANE is a underdiagnosed disease that is typically triggered by a viral. or bacterial infection. It’s a “new” disease in the medical world and not a lot is known. It can be both genetic and both non genetic. I can be triggered only by certain virus in some individual and by a lot of different virus in other individuals. My daughter has the genetic version and so far, her trigger is influenza b.
As the days progress, the pandemic news spread and Canada announced it precautionary measures. This is when the insomnia set in, the what if, and how do we keep ourselves safe. The major obstacles of families who have been affected by ANE is that they don’t know what the virus will do or if it will acerbate their brain injury. ANE individuals are changed for life and they can relapse or have other conditions such as palsy after contracting a virus or a bacteria. This insomnia goes through out our ANE community, parents and caretakers are not sleeping well. They are questioning the best tactics to keep their family safe but also well. We are all trying to find light in this dark pandemic time.
As the situation “normalize” and we slowly reopen the country, we are left with working with the mental health of our family but especially people dealing with brain injury. They take comfort in routine and my daughter is social but struggles with technology so we took the time to build her art skills to get busy on a project that can take a long time.