Insidious

 The only word that describes my feelings today is "INSIDIOUS!" Today was another watershed moment for me as a father. My youngest child, who is only nine years old was admitted to a mental health facility. 

You have likely read the travails of our previous experiences with mental health with kids and adolescents through the story of my oldest daughter. Who thankfully seems to be fairly stable right now. Currently we are able to focus on future plans for her, which is so much easier than constantly treading water. Sadly this stage will likely change at some point, but we will enjoy these moments with her while we can. 

If anyone has ever met my youngest son, AJ, you undoubtedly met a smart, charming, cute and outgoing kid. For 90% of the time he is helpful and loving and caring. Always thinking about what is next and when he can hang out with one of his friends again. He does not like being alone and wants to always be engaged with another human at all times. He hates to read but excels at math, He has a perfectionistic streak and while he won't admit it, the opinions of others matter to him greatly. He idolizes his big brothers, Courtney and Will, and misses them both so much now that they are both out of the house. He adores his older sisters, Lyric & Alexis, but can't help but annoy the hell out of them on any given day or I should say everyday. He loves and cares about his grandparents and frequently tells them so and offers his services to them in anyway possible to make their lives easier, provided they have cookies or ding dongs for a reward. They think they have him trained, I am thinking he has them trained. AJ and his mother have a beautiful bond that rivals other moms and their little boys. She is the only one that can make a perfect grilled cheese and she is the best cuddler he knows. AJ loves me as his dad and he knows I mean business when the time comes, but he also knows I will not ever leave him alone, I will be there when he calls and that I am best the tickler and prankster around and can always make him laugh. 

 I hope he knows that he is the one that makes my heart smile and beam. Even when he is being his worst self (the mental illness) he can still make me smile. I often stand in the doorway of his room at night after he finally falls asleep and gaze upon his face and whisper prayers to God above for his well-being. If you knew the challenges we face with him on a daily basis, many would question how can we love this child You know what, my love for him comes easily and never once have I wavered in my love and affection toward him. 

He has had a rough few months, which equals we have all had a rough few months. Issues at school, issues with peers, food and sleep issues, med changes, and so much more all culminated in a significant event that occurred yesterday that shook us all to the core. It resulted in several hours in a psychiatric emergency room only to be denied access to services once the assessment was completed. Then resulted in several very challenging and physically exhausting hours at home with while trying to find other treatment options. Finally at 8 pm last night after many phone calls and discussions with various providers we were able to secure an admission to the hospital this morning at 9 am. 

As you know this is not the first time as a parent that I have driven the road to a mental health facility. AJ may be the youngest, but he is the third of our children to spend time in a psychiatric facility. So many times I prayed we would never have to walk this path with him yet here we are. It had been suggested before, but we could never bring ourselves to agree. This incident was different and scary and we knew that this was the only option. 

I admit I am afraid. Here is what I am afraid of, that AJ will come back to us a different kid. Maybe he will come back to us jaded or negatively impacted by his experiences. They expect he will be there 7 to 10 days and we are not allowed to visit him during that time, thanks to COVID! We can call him daily and check in with him. I am afraid that this time away will change his connection to us somehow maybe for the better or maybe for the worst? I have said many times he is way too connected/dependent on his mom and I, but is that all bad? He is only nine. Do we need our kids to grow up so fast? I think he needs to be more independent and we can hope this experience helps him in that arena. He is never been away from both of us for this long. He has always had one of us except for summer camp which was only 4 nights and he did great. 

My other fear is that starts a long road of facilities and programs in order to keep him safe. The same path that both his older brother and older sister took. I am afraid this first hospitalization will only be his first, but I long for it to be his only. I want good sound answers and solutions found during this time, but if there is one thing I have learned about Mental Health is that there are no easy questions and no easy answers. Is it wrong to want a smoother ride for my child, not one marked by mental illness. 

Further I fear, and I know it is irrational, but I fear that this is all my fault. Three of my five kids have mental illness, what is the common denominator here? Their mother and I and the way we raised them are a common denominator. How is it that so many of our kids are affected by this insidious disease? Granted all five of our children are adopted so they do not come by it through our genetic patterns, so it must have been something we did in how we raised them and treated them to make them this way. RIGHT???? I know, I know, but I would be lying if I did not succumb to these thought patterns at times. I know we have been good (not perfect) parents to our five amazing kiddos. I think the only genetics involved here are those they were given by their biological parents and there is a history of mental illness in their biological families.

 In AJ's case, we truly believe the defining factor was bio mom's use of drugs during the early months of her pregnancy. We have done so many tests and treatments and supplements and etc. that no other explanation makes sense other than prenatal exposure to drugs. NOT HIS FAULT - yet he is the one how has to live with the consequences of his bio mom's stupid choices. All those years ago I used to think my love and influence and NURTURE could overcome his NATURE. Well, my kids quickly taught me that is not always the case. We can't win over the inherent nature that our kids are born with and forced to live with all their lives. Oh how I wish we could win that battle, but it is not to be. Some things just cannot be changed or overcome and sadly MENTAL ILLNESS is included in that list. 

Mental Illness is insidious as it has no rhyme or reason or pattern and it is no respector of persons in whom it chooses to attack, including my 9 year old amazing son. I ask in the days ahead to keep him in your thoughts and prayers as well as the rest of of us here at home. AJ's life force is strong and will not be ignored and not having it here on a day to day basis will be hard though an opportunity for some respite for us as well.

The Single Parent and the Teenager with Mental Illness

Let me just say I am not a single parent. I am blessed that my former wife and I can still work together for the well-being of all our children. Over the past few weeks, I have had the experience of being a single parent. One week (actually 10 days) for the mother of my children to take a much needed vacation and spend some time with her mother. Then a week after she returned she left for a business trip and was away for five days. It was during those times I felt like a single parent and damn it was hard.

I started out my parenting journey as a single parent. I adopted my oldest son when I was single and he was only two years old, that was 19 years ago. Courtney and I were alone together just him and I against the world until he was eight and I married the woman who eventually adopted him as her own. We both had to adjust to life with this woman in our lives. It was an adjustment for all three of us, but we figured it out. Throughout the years of our marriage my former and wife had times where one of us had to be away for a day or two or even longer, leaving the other home alone with The Bunch, however many there were in the family and living at home. We ended up with five kids that we call our own, but we have experienced coming and goings as a result of trauma, drama, mental illness, life changes and milestones met. I explain all that to say being a parent is tough for anyone and has its ups and downs. Any parent who is reading this would agree.

There are nights you fall into bed so exhausted you cannot even get undressed. Then there are nights when you fall into bed with gratitude for the beautiful family you have had the pleasure to spend your day. I have had many nights where I have stood in the doorway of a sleeping child's room in the stillness and watched their chests rise and fall. Seeing their closed eyes in the rays of moonlight that filtered through the windows. Those moments of awe and peace were beautiful and I treasure those moments always. Yet when you are the only parent in the house and especially for many days in a row, there are not many opportunities to count your blessings. 

During these days of single parenting, I was privileged to have my parents step in and help with things here and there. Yet in an attempt to protect their roles as grandparents I am careful what I ask of them. Managing meals, back packs, home work, medications and appointments while still trying to work as a single parent is at times overwhelming. Yet there is my single parenting days over the past few weeks where it included a teenager with mental illness on top of it all. One of the reason's my former wife and I have chosen the living arrangement we have is so that we do not have to be a single parent to our kids. I have referred in previous posts of how we tap in and tap out with each other as needed. That is hard to do when you are across town from each other. Believe me when I say this arrangement is not always easy or convenient for this formerly married couple. We have had to forgive and let go of the past hurts and pain and move forward for the sake of our children and our own sanity. 

Back to my days of single parenting, they were hard and challenging and in the midst of all that was when I started blogging about life with my daughter with mental illness. Those days brought up a lot of feelings and thoughts that I just needed to get out of my system. Yet it has taken me on a deeply personal internal journey of how I truly feel about this child of mine, the teenager with mental illness. I am going to be very candid and open with my readers now and I hope you will give me grace and understanding as I share what I have to say. 

I have a very defined and clear understanding of my love for my daughter. I know that she is my daughter and I cannot imagine her not being in my life. My love for her is a defined fact that will not be disproven. Yet if truth be told, I do not always like her. She can be mean, spiteful, vengeful, hateful, selfish, demanding, whiny, confused, annoying, calculated and many other attributes and names I have attributed to her in my mind during the days when her disease if working in over drive. It is hard to overlook the actions of this daughter of mine and remember it is her illness making her take these actions (though some are hormonal), and just take it all. She has called me a liar, a killer, a thief, a kidnapper, horrible parent, demented, crazy, stupid, ugly and many more names that I care not to repeat including words I would never ever say aloud. She knows every curse word in the book and maybe some that she made up. She can slam doors and throw things and storm out the door and march down the street in anger. She can write me notes and letters telling me what she really thinks of me. I know I am not alone. I know many parents have experienced such moments with their children at one point or another. Yet I do not know many parents who can say they have experienced that for so many days in a row for months and years on end. That can wear on a guy. That can wear a dad out. That can really drain my grace tank. I sometimes run out of grace. 

There is no joy in admitting that I have yelled back at her at times. I acknowledge that the vitriolic screams and accusations that she hurls at me do indeed hook me and trigger every bone in my heart and mind at times. I have dreamed about getting up and walking out the door and getting in my car and driving away and never coming back, but I have not. There have been many times when I have thought about just refusing to deal with her anymore and telling her mother that I want nothing more to do with her and she is all her problem now, but I have not. I have gone so far and imagined what our family would like if she were not in it and wonder if it would have been better. Remember I am being painfully honest here people. It hurts me to share these thoughts, but they are real. This is what living life with a teenager with mental illness can do to a person. 

It is during those times when I am single parenting that I struggle the most with those feelings and emotions Those are the times when I am her only target that I feel it the most. Many days I can deal with it, but after several days of single parenting with her it gets old and exhausting and frankly I just shut down to it all. It is in those times where I am just doing what I have to do to get through the day while keeping everyone safe and alive. You have to remember I not only have my daughter with mental illness to care for, but my two younger children are in the home as well. I have to attend to their needs as well and honestly they do not always do well when their big sister is demanding all my time and energy while single parenting. It is not unusual when my daughter is struggling that one of the younger ones will be on their own roller coaster and need more support than normal. Therefor my energy becomes more sapped than ever as I try to keep all the plates spinning. We sometimes joke and ask each other, what did we do to end up with such a diverse group of kids that have become ours both in love and law. 

Lifting my glass to single parents everywhere, it is a tough job! It is not for the faint of heart. Frankly, I don't recommend it, especially when dealing with a child/teenager with mental illness. It will drain you and take its toll on you. You will feel like you have been physically beat up and mentally fried. Eleven year ago we did not know our daughter had a mental illness when she came to live with us at the age of 6-years. We expected there would be challenges as she was considered a special needs child as she was over the age of five in the foster system and had a lot of memories and feelings associated with her bio mom and their life together before the state separated them. We also knew going into it that she had some developmental delays that we would need to address and we were glad to do what needed to be done. As she has gotten older her life has complicated ours more than we ever thought possible, yet here we are still plugging along one day at a time. 

This evening my co-parent returned home after being on a five day business trip and whew am I tired. As she settled into the family routine again I slowly eased my way out and took my leave and went to my domain and started to breathe and decompress, so I could start the recharge process. It is what we do and how it works for us as a unit. 

Let me conclude by saying LOUDLY and CLEARLY, I love my daughter just the way she is. I appreciate who she is as a child of God. I recognize her gifts in art, creativity, boldness, curiosity, resolve, honesty, goofiness, and desire to want to be healthy and whole. 

The Eyes of a Teenager with Mental Illness

 Her eyes are deep brown and at times sparkle and reflect joy and pure elation. Other days her eyes are dull and lifeless and appear to be sunken in with dark circles beneath. Many times we can tell her mental status just by looking at her eyes. We have all heard the notion that a person's eyes are a window to their soul. Yet there are days when I look into her eyes that I am scared and fearful of what I see. 

She can bubble and sparkle and be giddy and silly and screech for joy, much to the chagrin of all nearby ears. Her laugh is loud and boisterous and at times forced as she feels it is the appropriate response in a given situation. Sometimes her ability to track social cues is skewed and those laughs come at inappropriate times. We have all had those moments of social faux pauxs, yet for her they are regular occurrences. If her mother or I are nearby we may flinch at the awkward moment and try to discreetly redirect her in hopes she will accept our direction and move on. There are times when she does not accept the direction and makes the moment harder for all involved. During her younger years it was easier for others to dismiss those moments. Now sadly that she is older and looks like a typical teenager and it is hard for people of overlook. She is a classic case of you cannot judge a book by it's cover. 

The eyes at times can be sunken in and dull with no true reflection being offered in return. These are the moments when her entire countenance changes to reflect how her mental illness is affecting her in that moment. These eyes can rule her body for an hour or days at a time. Episodes of dark brooding and extreme paranoia. At times she will stop and freeze in place, no matter what she is doing, and stay like that for a minute or even five and if we notice it we try and break her out of it. She is not able to explain what happens to her during those interludes of lostness. I wonder if during those episodes if the voices of her illness are trying their hardest to take complete control of her. On these dark days I feel as if the voices and imaginary things no one else can see or hear are trying to stage a mutiny on her mind. She sleeps more during these dark times and I suspect she is exhausted from fighting those voices and visions from a complete take over. The constant fight that must wage in her brain must be exhausting and I admire her for fighting the good fight. I pray each day that her strength be renewed to continue the fight and to never completely give in and surrender. 

During my moments of frustration and even righteous anger I struggle to remind myself not to be mad at my brown eyed girl, but to be angry at this insidious disease that is trying to overtake her. It is so hard to see beyond her face, which is lovely and beautiful, to see the monster that lies within and place blame where it belongs. Yet as a teenager she does have culpability at times. Herein lies the struggle as we try and distinguish if this a typical teenage reaction or is this a mental illness reaction. It can be a very hard distinction to make and at times we never truly know. 

Which brings me to her sad eyes which are brimming with tears as she tries hard to hold them back. It is when I see these sad brown pools of tears that I know she is trying so hard to understand what she is supposed to do. These moments where she does not understand ours or others frustrations with her. When she thinks she is spot on in her responses and actions only to find out she is still off. The real girl inside wants so hard to please and be accepted and struggles daily to find ways to do that. The little rivers of frustration trail down her cheeks as she tries to explain to us that she is trying and does not understand. The moments when she is so overwhelmed with sadness and frustration over the situation she finds herself in and knows there is nothing she can do. It is during these times that I find  myself the angriest, not at her, but at this stupid mental illness which has wreaked such havoc in her life. 

I have also seen angry eyes which shoots darts of death and mayhem at me or who ever she is upset with in that moment. Interestingly enough I feel that these angry shooting eyes are combination of her true self and of her disease. I think the eyes and feelings associated with them originate with my daughter but are then intensified and overtaken by the disease to the point she can lose control.  As the fiery darts are shooting from her eyes she is often yelling and screaming and sometimes even running after you to gain a physical hold of you. Honestly those moments scare me and I do not always know how to respond. My first goal is to keep everyone safe and to get the siblings out of the way as often times these moments are directed at them if not her mother and I. We have to think quickly as to how to deescalate her. We do not argue with her, but we encourage her use her words and we try to help her sort out truth from lies. Have their been times where she has done damage, well yes there have. Thankfully they have been far and few between. They have been as brief as 10-minutes to lasting a couple of hours. During these scenarios are when her mother and I tap in and tap out as needed. Sometimes we are both required to be a part of the intervention. When the siblings were younger it was harder to manage as they would get scared and need more reassurances. Now they have a sense of this being her illness and are able to separate without too much fear, but they do worry about their big sister and need reassurance once the episode is over. 

As I have written this post I find myself thinking of my own eyes and what she sees in my eyes. It is my hope and prayer that she sees love, compassion, truth and understanding. Yet I know there are times when she sees frustration, anger, disillusionment, exhaustion and maybe even nothing at all at times. The days are long for my co-parent and I. Each day we look into her eyes and try to gauge what we are going to get that day. Some days are full of light and bubbles and other days are full of darts and fire. 

All that being said, the eyes do tell a story. They are predictors of victory or defeat. The eyes are one of the keys to her well-being. What will she see in your eyes next time you encounter her or what will anyone see that you encounter throughout the day?

Severe Stress of Daily Living with My Mentally Ill Teen

 As I continue to reveal the story of our lives impacted by teenage mental illness it should come as no surprise that there is a great deal of stress included. The fears, confusion and grief equal a great deal of stress as parents to our seventeen-year-old daughter who is affected by mental illness. The stress not only comes directly from her, but from other sources as well.

One of the primary stresses comes from the educational system. I admire those who work in the educational system as their jobs have become increasingly more challenging in recent years. Historically schools only had to deal with kids who had developmental delays and support them in a self-contained classroom setting. As educational awareness has increased in recent decades those kids impacted by special needs are now given access to the “Least restrictive environment” possible. Not just kids with developmental delays, but also those with behavioral challenges and emotional problems and mental illness. As a parent I was not, and some days still not prepared for raising this child. I cannot imagine how teachers and other educational staff must feel. This means that students such as my daughter are “mainstreamed” into traditional classrooms with supports in place for them to be successful. These supports not only include a full time paraprofessional but also altered educational goals that match her ability levels. The stress of managing all these components as her parents are great. On any given week we field calls and messages from education staff regarding her behaviors and academic progress. We have a great deal of respect for the educational staff we work with and appreciate their efforts, yet if we were not advocating on a daily/weekly basis our daughter’s education experience would look much different.

Another factor of stress we deal with is that of dealing with her mental health support providers in the form of psychiatrists and case managers and pharmacist and others as needed. The stress involved with managing the various parties involved with her daily mental health is making sure everyone is on the same page as things change and evolve in her illness. Given the frequency of transitions that take place among providers we have to stay on top of her medical history, hospitalization records, prescription history (which is extensive and daunting) as well as documenting issues that occur at home. There are times when various agencies forget to schedule follow up appointments, so we then scramble to get appointments made before prescriptions run out. Some prescriptions cannot be renewed without a follow up appointment with the doctor first. It has happened that we have gone a day or two or longer without necessary medications because providers could not accommodate the deadline in their schedules. Which results in increased stress as we wait on pins and needles as to how our daughter will react without a key medication in her daily regimen.  

Stress comes in the form of family relationship dynamics between our daughter and other siblings. She can be demanding and rude and selfish to point that she grabs too much of our attention thus causing the other siblings to feel ignored or pushed aside. We will discuss this issue more in detail in a future post.

There are times when going out into the community with her is stressful. Example a few years ago I was at a clothing store with her and she was annoyed with me. As we were checking out, she started telling the store clerk that she hated me and that I was not her father and that she needed to get away from me. The clerk looked at me startled and I quietly reassured the clerk that she was upset as I would not buy her what she wanted, and therefore she was making such statements. I admit my stress meter was going off the chart as I was waiting for a squadron of police officers to descend upon the store, surround me and demand I put my hands up and step away from the girl. Luckily the clerk did not overreact and just smiled and sent us on our way as I am sure she was having the same mental images I was at that time. I looked over my shoulder repeatedly as walked to the car and exited the shopping center. That incident alone caused enough stress that it physically affected my body and made us overly cautious as to how and when to take her into public settings. While I admit her self-control may be a bit better as she gets older, she is still capable of such behaviors at any given moment.

I find myself constantly plotting as to how to help my daughter be successful in the community. Historically she will walk up to strangers and say inappropriate things to them. Trying to discern when she is in a good enough head space to give her freedoms and liberty in public (as any typical 17-year-old) versus keeping her by my side. We have been very blessed that most people who have been approached by Lyric have been very kind and gracious towards her, yet as she gets older I fear that may not always be the case.  

Stress is something everyone deals with every day. Raising kids is stressful. I am not trying to convince you my stress is worse than anyone else’s. Yet it is different and comes from different places and it is hard to get away from the source of stress somedays. This is one of the main reasons that my co-parent (former wife) and I share a home with the kids as alone we could not parent this child in a healthy way. We have days where we must tap out or tap in as we know and recognize when we are reaching a point of being unhealthy. There are times when one of us is out of town and must deal with the stress the best way we know how. Sadly, there are times when we allow the stress to overwhelm us and express it in unhealthy ways. Do not worry no gets hurt or anything but voices are raised, and groundings are issued and there is a deep fog of tension in the house for awhile and the adults give themselves their own time out.

As a foster and adoptive parent I have dealt with a wide variety of kid issues. Yet one of the most challenging and stressful things I ever deal with is determining when I and my co-parent cannot do anymore for our daughter at home. We know she is deteriorating fast and have exhausted all of our local supports and the mental health providers are at a loss as to what to do next. So we are forced to look outside or our home and community.  We have had to have our daughter hospitalized on several occasions over the years. It is heartbreaking to watch her suffer to the point she needs to be hospitalized. It is stressful trying to find a hospital that will accept her as a patient when she is at that level of distress. The process of finding a mental health inpatient facility is like a lottery system. When they say they will admit her you have to run, don't stop, don't pass go. Just get there ASAP or another patient in need could get that bed. Then the process of admissions is stressful as we have had to learn how to answer the admissions questions in such a way (while still telling the truth) that increase her odds of acceptance for admission. Sadly mental health facility admissions is a game. The act of surrender and leaving her in the care of others is stressful and in some ways a huge sigh of relief. We question ourselves. Is this right place for her? Did we really do all we could before coming here? Will she contact as while she is there? One hospital was four hours away from home and we were not in a position we could go visit during her stay. We prefer she not be so far away from us but we can't be too choosy when she is in distress. 

We have read the articles and watched the videos of how to manage stress. Everyone has to figure out the best way then can manage their stress. The key is to manage the stress and not let it overwhelm you. Which is not always easy when raising a teenager with a mental illness.

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.

366 Days

It was 366 days ago that the world as I knew it changed in a way I had never expected. It was May 20, 2019 the day of The Great Burning which greatly effected the Ballard/Wilson family. Never in my wildest dreams did I expect when I woke up that day we would be homeless by bedtime. Yes it was the fire that over took our house from basement to main level. The journey we have traveled on since is not a journey for the faint at heart. I thought hard about writing yesterday about this momentous event, but I decided I couldn't do it yesterday. I needed one more day to just be with it. Funny thing not a single one of the Ballard Wilson clan he spoke of it to one another. It was more like a day of remembrance rather than a day to remember.

So today I will take a moment and remember! But rather than recall the events of that day I will talk about some things I have learned in the past year

1) Never take anything for granted! I woke up that day expecting it to be any other day. It was the last Monday of the school year as the kids were wrapping things up for the school year and preparing for summer fun. It was a pretty normal Monday evening when the fire broke out as I was making dinner when it was discovered. I had mac and cheese on the stove and I have no recollection of turning the stove off before evacuating but I did. All the kids and the dog happened to be within 10 feet of me when I discovered the fire and we were able to evacuate the house within 30 seconds. The cat was even there but she ran during the evacuation to the back of the house and she did not survive the smoke. That is our greatest regret of the fire! I don't take those things for granted anymore. Mac and cheese and knowing where my kids were and for the fact it was not raining while we watched the fire department save what they could of our house!

2) Give thanks for what you do have! I remember that day and I realized about 9:30 that evening once we got the kids settled at Grandma's house that I had no clothes to speak of except what was on my back. I was wearing only a pair of short, t shirt, under clothes and flip flops. Had the fire happened in the night I would likely have been a lot less clothed. So I am thankful for that as are all the neighbors and first responders. LOL  Amazingly the kids and Julie all had clothing at Grandma Louise's as she was helping Julie get caught up with laundry that week. Turns out only Courtney and I were the only one's left with whole new wardrobes to obtain. I give thanks for that - as it has been fun buying all new clothes over the past year!

3) Timing is everything and I do not believe there are any accidents. It is after these cataclysmic events and the dust settles a bit that you start to ponder the "what ifs", What if it would have happened later at night and we had all been asleep? What if one of the kids had been downstairs when the fire broke out, could I have gotten them out safely? What if we had lost the entire structure of the home not just the inside? What if? What if? What if? While I do not believe God caused the fire to happen, I do believe He managed the timing of various events and circumstances after the fire. Such as the arrival of the Red Cross workers. Such as forcing us to go to a hotel on the extreme other side of town only to have a tornado come through town two days after the fire that did major damage to the hotel we really wanted to stay. God protected us from living through another major event in the same week. I am confident that God protected us from that.

4) Home really is where the heart is! Yes our home was destroyed Yes we were displaced but we were never without home. This is a message we kept reinforcing to the kids! As long as we are together and alive and well we are home! Between two hotels and a rental apartment and a rental house we manage to maintain HOME! The kids kept wanting to go home because the missed the creature comforts such as more than one bathroom, having their own rooms, and etc. We used this time to remind them what is really important. Love, family and faith.

5) Pride is not a pretty look. We were overwhelmed by scores of people offering their help and assistance in anyway. For the first several weeks we received help and assistance in numerous ways from numerous people We were amazed at those who reached out a hand to help and disappointed in those who did not. Just being honest. There were people in our lives who chose not to help and that is fine, as we all have our own battles. We learned that when you ask for help you have to be specific and we learned that when you are specific you may not get the help you truly seek. Yet through it all we never turned down the help we were offered even if it did not always make sense. We had to learn to accept things even when we didn't think we needed them! Turns out we needed and used it all! There was one friend who used the opportunity to teach her kids about giving and they made special arts and crafts boxes for each of the 3 youngest kids including snacks. The kids thought those were amazing and a year later still remember. Thanks Emily!

4) Hope for the best and plan for the worst. We were of course very eager through the clean up and restoration process for the professionals to get in there and get it done. Unfortunately as a result of the famous Jefferson City tornado two days after the fire that really put the restoration resources of our community into overdrive. Given all the devastation that had happened in our community we could not yell and stomp our feet for professional helping others in need, though I admit there were times I wanted to. As a result that meant various components of the clean out and renovation were delayed for what seemed like forever. It took over 3 months for our house to be cleaned out and prepped for the renovation. Needless to say our hopes were dashed time and time again for this phase or that phase to completed. By the time it was all said and done (nearly 9 months) we stopped expecting things to be done when they were supposed to done. As a result I now hope for the best and plan for the worst. Then we occasionally get surprised.

5) Stuff is just stuff! There were very few things that could not be replaced as a result of the fire. It was a hard lesson for the kids to learn and maybe even the adults a bit as well. Yet quickly we all realized stuff is stuff. The only things we couldn't replace was Lovey, the kid's cat. Toys, books stuffies, furniture, clothing, mementos and etc are just things. Items we cannot take with us when we leave this life. Our youngest daughter probably had the hardest time accepting the fact that her large stuffy collection (more than 100) could not be saved. We attempted to save several but the smoke damage was too severe and could not be remedied. Let me assure you she is well on her way to replacing that collection once again, thanks to her grandparents. We also realized during the inventory process that we had too much JUNK anyway. Every pin, paperclip, hangar, bar of soap, roll of toilet paper and every other minute item big and small was cataloged and inventoried. The items that were melted and destroyed we had to estimate brand, value and quantity. If I ever have a fire again (GOD FORBID) I am gonna let it all burn to the ground so I don't have to go through the inventory process again. Between all of there were over 200 pages of itemized items that were lost in the fire. Sad thing is that we are pretty sure many things were missed at that.

Now that we all are safe and sound in our newly renovated home life is good! We moved back in to the house late February and early March. Settling in and getting all the new furniture and decor in place has been fun. Letting the kids be a part of decorating their rooms has been fun and seeing their individual personalities shine through. AJ has a super hero room. Alexis has a nature room. Lyric has a pink Hollywood Regency inspired room. I have simplified my design style as well. Much less crap and simpler wall decor and a commitment to staying away from flea markets, vintage stores and Home Goods!

So all in all the past 366 days have been eventful, long, life altering and a return to the simpler things in life. Thanks for to COVID 19 those lessons have been reinforced at the end of this 366 days. We will wait with grateful hearts as we move forward into the next 366 days of life. Let's hope we experience life ahead with a few less cataclysmic events! Please Lord!