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.

Confusion and Frustration

 

As many of you know I, along with my co-parent, are raising a teenager with a significant mental illness who also has intellectual delays. This child, actually young adult, is now 17 and as we watch her move closer and closer to so called “adulthood” a lot of fear and uncertainty rings in our hearts and minds. 

The last few days and even weeks we have watched her sink into another one of her downward spirals with her illness. I frequently search the internet for articles and resources for parents of kiddos such as our daughter. Sadly, the resources are limited and even more so for those of us who live in smaller communities. One of the articles I found listed a common list of feelings and experiences that parents encounter as they raise their young adult impacted by mental illness. Over the next few days, I will be sharing that list with my family and friends and anyone who is interested. It is my desire to raise awareness of what we experience daily with our daughter. The need for more effective and widely available services for children and teens with mental illness is overwhelming and sadly ignored by the medical and psychological communities.

The first feeling/experience the article noted was that of

“Confusion and frustration from watching your teen struggle.”

It is no secret that raising a teenager is challenging in today’s world. The fears of drugs, alcohol, bullying, peer pressure, future planning, grades and so many other factors are overwhelming in and of themselves. Yet when you add mental illness to those issues it becomes almost crippling and paralyzing for a parent. One of the conflicts we consistently manage is whether or not we are dealing with a mental illness issue or a typical teenage issue. Let us be real, teenagers are not known for acting sane at times. Some of the behaviors we see are hormones raging and affect behaviors. Yet there are times when we must believe that the extreme behaviors originate from her mental illness. These fine lines are confusing as a parent to navigate and process. Depending on which of these realms a specific behavior originates determines how we respond. If the wrong response is given to her we will know. Thus, comes the confusion!

The most consistent issue we have been dealing with recently is that of paranoia. Whether or not someone is watching or following her. Then there are the times when she is convinced someone has installed a secret camera in her life somehow that follows her wherever she goes. The other day she emphatically knew someone hacked into the school computer system and changed her grades. One of the most predominant paranoid issues we hear almost daily is that the government is lying to her and lying to us about her origins and where she comes from. In her thinking she is convinced that she must be an alien as there is something wrong with her and no one really knows what. So there for her logical conclusion is that of alien origins. As a parent somedays it is easy for me to chuckle and walk away. Other days it becomes maddening as she is so fervent in her belief that she becomes belligerent which can trigger my own frustrations. I admit there have been days where I have had to stop and wonder what she is saying may be true or not. When I sit and listen to her begging me to believe her and agree with her outlandish claims it is almost believable. I am being honest with you in saying that her situation does indeed create confusion for us as her parents.

How do we cope with the confusion and frustration of being her parents? It is not easy! We hope and pray and we share our feelings back to her in hopes a part of her can understand that we want to believe her, but most of her beliefs are not founded in truth. We keep pointing her back to truth and what is real. Yet once she gets fixated on a specific paranoid thought and behavior it is difficult to get her to let it go. She may let it go or stop talking about it, but an hour or two or even a day or two later she picks it back up and comes to us with that paranoid belief once again. It is on those days when she comes back time and time again that our own frustrations rise. We find ourselves repeating ourselves and then she feels like we are not hearing her. Which increases her frustration and emotions. It is truly a difficult cycle to live in and causes stress for all who live in the home with her.

There are no good answers to our stress and frustration other than having our own outlets for dealing with those things. It also helps of we have time between paranoid episodes to decompress, yet there are days where she bounces from one paranoid thought to another and we do not have enough time to decompress. If this thought feels unfinished, well it is unfinished as the frustration and confusion never truly goes away.