A Sense of Loss of How Things Could Have Been

Yesterday I introduced the daily frustration and confusion my coparent and I encounter with raising and supporting our teen age daughter who is plagued by mental illness. The second of the common experiences and feelings we experience is that of a sense of loss of how things could have been for our daughter. The loss of a typical teenage girl experience is sad to me. She misses out on activities at school, normal peer relationships, dating, college planning, having her own cell phone or being able to drive. Our daughter will most likely never have any of these things I just listed and miss out on so much more. Due to her inability to deal with truth and reality she does not have capacity to take on typical teen responsibilities and opportunities. The grief associated with these losses for us as her parents is overwhelming.

 

We tend to think of grief as associated with the death of a loved one or the end of a relationship or to something we no longer have. When it comes to our daughter, we grieve the dreams we had for our beautiful brown eyed girl. While most parents look forward to the milestones of the teen age years and guiding them through the process to adulthood, we do not have that luxury. Instead, we spend these years keeping her as mentally stable as possible without drawing to much attention to herself. We monitor her medications daily and coordinate with mental health professionals whenever we start to see things shifting again. The medication changes are frequent and with those changes come new side effects or worsening of existing side effects.

 

My grief is frequently reawakened when in one of her rare moments of clarity she sees the difference between her and peers and how sees the unfairness of it all. Those days when she can see clearly reality of her illness and how it stops her from experiencing typical teenage experiences. To hear her cry and see her tears is heartbreaking when we must tell her she will not be able to drive or that she will not go to college. In those moments I feel like I am crushing her dreams, which are real no matter how unrealistic. There is a blessed grace in that she frequently forgets those conversations and does not hold those things against us as her parents. Yet there are days when all those moments come rushing back at her and she lashes out at us for taking all these things away from her or keeping her from things all the kids at school get to do. Honestly, who else is she going to blame other than us as her parents. She cannot blame herself as none of this is her fault anymore than it is ours. Yet the reality is that we become the target of her frustration, sadness and anger and some days it is very hard to take. On those days the grief seems unbearable as her parent.

 

How does the saying go, “time heals all wounds.” I am not so sure in this situation that truly applies when it comes to the grief we deal with surrounding the rest of our daughter’s life. Can she get married one day? Maybe but not likely. Will she have kids one day? Maybe but not likely nor can I see that being a good idea for her or a child of hers. Will she become a fashionista that influences trends around the world. Maybe but not likely.

 

These are all things that are hard for me to say as I have worked professionally with people with disabilities my entire adult life. We were trained from day one to be strength based and coach these individuals to pursue their dreams whatever they may be. To always accentuate the positive and not focus on the negatives. To not look at roadblocks as stopping points, but as opportunities to create a different path and to think outside the box. I have to tell you as the parents of someone with mental illness and developmental delays it is real easy for me to say, “that is not a realistic approach to what lies ahead for my daughter.” Somedays it feels like pursuing that line of thinking is setting up my daughter for more heartbreak and grief.

My number one job as a parent is to protect my child from such things as setting up unrealistic goals and pursuing dreams that this world cannot make happen for someone like my daughter.  Which only adds to the grief we deal with daily.

 

We already grieve the likelihood that we will not have a chance to take her shopping for her wedding gown, not have that father-daughter dance at the reception, will not be able to cheer her on at her college graduation, not be able to beam with pride as she accepts awards for her business and fashion abilities. I have learned grief is not a time limited experience as it ebbs and flows as we watch our daughter move forward in her life with the plague she has been given.

 

During all the grief, let me reassure you that my daughter is an amazing young woman with beautiful brown eyes, a lovely smile, a creative imagination, an amazing artist with pencil and paper, with a yearning for knowing and understanding the whys of her life and a sensitive spirit. She is funny, never meets a stranger and at times insightful and a curious learner who can ask good questions. She is 17 years old and has the heart and development of a 7- or 8-year-old which at times is refreshing. She is a black and white thinker and does not understand shades of grey and does not think in linear concepts. Most people see a typical seventeen-year-old quirky teenager with a sweet smile from a distance. She has all these amazing qualities and gifts and yet we grieve for what probably will not be for her.