As a parent to a child with a brain injury, I can tell you that this journey is an emotional roller coaster from hell. The truth is we grieve and most people on the outside just don’t get it because after all our child is still here. This is my attempt to explain something that is hard to “get” unless you live it.
When someone you are close to passes away, there is a wake followed by a funeral and then the grieving cycle begins. Generally the grieving cycle consists of shock and denial, followed by anger, then sadness, bargaining and finally acceptance. When your child suffers a brain injury most times you have a child who looks like they did before but they are an altogether different child. Almost like a stranger was placed in their physical body. We not only go through the grief cycle but are often times left with what has been called chronic sorrow. Chronic sorrow is defined as the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions*.
Shock and denial is the first step of grieving. According to the Head Injury Center every 5 minutes in the United States a brain injury leaves someone permanently disabled. When that brain injury happens to your child, shock sets in fast. I remember looking at Isabella hooked up to all these machines, tubes and IVs everywhere, thinking is this really happening or is this a horrible nightmare that I will wake up from? I mean after all Isabella was fine all Thanksgiving Day, how did things go so terribly wrong so fast? I was physically going through the motions but I was in complete shock. There are chunks of time that I just don’t remember. Denial is something that I never experienced and for that I am eternally grateful. I think the fact that I was a single parent helped me a lot. I couldn’t fall apart or deny what was happening because I was the one having to make major decisions that could lead to life or death.
Anger is the second step of grieving. For me anger is such a foreign emotion. I am not an angry person. I can only remember two times in my life where I was angry. Yes I get mad or upset like everyone else but anger well that was not an emotion I was used to. I was angry that my child was robbed of the life she was supposed to have. Isabella was a 4.5 year old little girl who had the world waiting for her. She was this happy-go-lucky, social, smart little girl who met friends everywhere we went. She was in preschool and she was playing on a soccer team – the one thing she had talked about since for as long as I can remember. Yet my baby girl was hooked up to machines galore and fighting for her life. I was angry and I have my moments were I still am. It is ok to have those moments as long as you are able to move forward.
Sadness is the third step of grieving. It is when the reality of your child having a brain injury actually starts to set in. I was sad that the child I had for 4.5 years was gone. Isabella looked exactly the same yet was replaced by what seemed to be a stranger. I was sad that Isabella had to go through and endure everything from therapy to tests to doctor’s appointments etc. I was sad that things Isabella had mastered before her ABI were now so challenging or gone such as walking, writing, coloring, sitting up etc. Watching Isabella struggle with not only the heartache of not being able to do what she once did but also seeing the frustration she felt because she knew she could once do it. I was sad and I still have my moments were I am very sad. I allow myself those moments because I am human and I know that I will keep moving forward.
Bargaining is the fourth step of grieving. It is when you try to find the reason or explanation as to why. It is asking “what if”, “should’ve, could’ve, would’ve” etc. Often times bargaining is people thinking that they are paying for past mistakes. I am fortunate that this is not something I went through. Quite frankly I believe that sometimes bad things just happen. There is not a rhyme or reason, it just is what it is. I knew that I did everything that I possibly could to save my child.
Acceptance is the final step of grieving. It occurs when you have come to the realization that what was is no longer and you start your new normal. Acceptance doesn’t mean that what happened is ok. It quite simply means that you are living in reality and have an understanding that life is different. I will never be ok with what happened to Isabella. She was robbed of her life. I have come to the realization that the path Isabella was on prior to her ABI will not be. However that doesn’t mean that Isabella can’t have a life. Will it be the same as she was set to prior, no, probably not but at the end of the day, all I want is for Isabella to be happy and live to the best of their ability. Acceptance doesn’t mean that all is ok it just helps you to keep moving forward.
Chronic sorrow is how best to explain life with a child who has a brain injury. You are repeatedly faced with a child who in most cases looks exactly like their old self. However, they are completely different. I miss the Isabella I had for 4.5 years. She was so happy-go-lucky with not a care in the world. When I have those small glimmers of my old Isabella (however brief and far between they maybe) I take advantage of it. What I have found is that I love my new Isabella more than I ever loved the prior one. It is hard to imagine that possible. The Isabella I have now has become my hero. I admire her courage to face each day no matter how difficult it maybe. I admire her determination and I hope she never loses that fight.
“The only people who think there’s a time limit for grief, have never lost a piece of their heart. Take all the time you need.” unknown
*taken from www.chronicsorrow.org
Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-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.
Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.