Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.
“To the memory of Giovanni (Gio) Cipriano”
When Isabella survived her Acquired Brain Injury (ABI) I desperately sought out other parents of children with brain injuries. Statistically speaking I knew I wasn’t alone and yet I couldn’t find any other parents. I knew there were others, after all, every 40 seconds another American youth enters an emergency department with a brain injury. I needed that connection with other parents who could relate to having a child with a brain injury. Only another parent on this journey could fully understand the emotions that you go through when you have a neurologically typical child one moment and then a child with a brain injury the next. At one point we all had a neurologically typical child, some of us longer than others.
I wanted to find an online support group. I needed the option to “talk” whenever I wanted to, on my own terms from the comfort of my own home. In-person support groups were not going to fit it into an already jam-packed schedule. Plus, I needed more than a once-a-month meeting. I wanted a safe, non-judgmental place to go to at any given moment. Most of the online brain injury support groups I found were a mix of survivors, spouses, significant others, friends, family etc. While these groups have helped me understand so much about brain injury and in particular, survivors, I needed more.
When I didn’t find an online support group specifically for parents, I started my own on Facebook called, “Parents of Children with Brain Injuries.” I had hoped to have at least a few parents join. One-by-one as parents joined, I realized that I was no longer alone and neither were they. We found comfort in knowing that while our paths may be different, the journey is the same because we all have that common bond of brain injury. We all belong to that “club” that we never asked for or imagined we would belong to. That feeling of being isolated from the rest of the world had ended because we finally had each other and we are surrounded by parents who “get it.” Our child survivors range from babies to adult children and our stories vary by how the brain injury occurred. We are all at different places on this journey. Some of us are brand new to life with a child who has a brain injury and others have been doing this for quite some time. “Parents of Children with Brain Injuries” has become our safe non-judgmental place to vent our frustrations, cry over the heartache of what has happened to our children, and cheer each other on while sharing the victories that others couldn’t possibly understand.
Having a child with a brain injury has changed us all. Our children are now faced with a very different life as are we. Some of our survivors are being bullied because of those differences. We struggle with helping the rest of the world understand that while some of our children look exactly the same, they are now completely different on the inside. We all go through the process of grieving the child we had pre-brain injury and accepting the child we now have post brain injury. We support each other in that moment of weakness when you don’t possibly think you can make it another day. We get angry when another survivor is treated unjustly by the school, the rest of the world or by family and friends. We share possible treatment options, how to raise awareness, discuss medical procedures, medication experiences and how to fight insurance companies. We celebrate the successes of hearing a nonverbal survivor make a sound, watching survivors figure out how to throw a ball or walk.
Two weeks ago, we had our first loss. A new member joined and she had a child struggling to survive a brain injury. Unfortunately that child did not make it. Words cannot express the sadness that was felt. I have never met this mother nor her child, and yet my heart ached just the same. After all, at one point most of us were in that same position (watching our child die), praying our child would make it through the night and defy all possible odds to survive. The reality is that every five minutes someone dies from a brain injury. That someone has a parent somewhere.
What started out as my need to connect with other parents of children with brain injuries has forever changed who I am as a person, a mother and a caregiver. I may never meet these amazing parents but I can’t imagine my life without them. This group and our members have had such a profound impact on me. I can’t express how much these parents have changed my life. If you haven’t found a brain injury support group, I highly recommend it. When you find the right one, you might wonder how you ever survived without them.