When I was asked to write this blog, I was very excited to participate. It’s human nature to want to talk about yourself, to tell your story, and to be proud of those unexpected accomplishments that life throws your way. However, as the days to the deadline grew closer I became less excited and more burdened, if you will. My heart began to feel heavy at both re-living and revealing this part of my life to so many. Then came the realization that the importance of sharing my story completely outweighs my own angst and dismay. I firmly believe in the old adage, “If I can help just one person.” So, here I go.
I believe my story starts with the fact that I was a trauma nurse. I loved the adrenaline of working in a Level 1 trauma center in San Antonio. I was fulfilling my life-time dream. It was better than I had ever imagined and I loved going to work every day. It was truly what I felt nursing was all about. I was a good nurse and I was super cool! Or so I thought… With trauma nursing and emergency nursing came psychiatric patients. I didn’t do well in my psychiatric rotation in nursing school – never liked it, never understood it, and it is probably the hardest thing for a nurse to do because I couldn’t easily “fix” it. The “psych” patients just slowed me down and I had very little tolerance for their behaviors. I tried to ignore those “difficult”, “non-compliant”, “crazy” patients and focused on the more glamorous trauma patient, the ones that we saw day in and day out. Little did I know my world would take a huge turn and what my destiny would be.
I met my husband at the hospital when we both played on a softball team raising money for United Way. It was love at first sight! Everything about him was perfect to me and we were soon inseparable. Married after a year of dating, we were excited to start a family and soon came our first child. Beautiful and strong, she was the light of my life. I remember when she started kindergarten, walking her to class while holding her tiny hand. I would tell her, “You are beautiful, you are a leader, you are strong, and you are a woman.” I wanted her to have confidence in herself and in her place on this Earth. I guess I felt, if that was our mantra everyday she would believe it. I told her that every single day.
We had a beautiful baby boy just sixteen months later. My hands were full with a baby and a toddler. I am always proud to tell new moms that I breast-fed both of them at the same time, my son on a regular schedule and my daughter at night before she went to bed. I really felt like this was the best thing I could do for them early on to keep them healthy and I soon fell into a rhythm of having two children close to age and working full-time. Things were great.
Our third child was born on Christmas morning – a tiny, skinny girl who immediately bonded with me and screamed inconsolably whenever I placed her in her crib or bassinet. She was harder than the first two and really demanded a lot of my time. She was very different from her older siblings. I had to re-adjust our schedules, my way of thinking and my comfort level of being this great super mom. It probably didn’t help that I was now 36 years old!
Things began to change when my son was 4 years old. He started pre-k and after four days, the school called to tell us that he was not ready for school. He screamed continuously, cried for me or his grandmother, and had to be carried by one of the staff members all day long. Since he was disrupting his class and the ones surrounding his class, 4 days was all they could stand I suppose, and being a private school that was their right. So Jacob was removed and sent to stay with his grandmother everyday. It was during this time that I started to focus on him as he started to do things that only I would notice. It wasn’t something I could exactly put my finger on but either my nursing skills, my mommy instinct or both that kept telling me to keep watching. I even called my mother early on and told her, “I think he has something neurological.” I remember her telling me to stop being a nurse and quit worrying. My son began to constantly clear his throat, something that I thought was just a nervous tic and tried to tell myself not to worry, just watch it and see what happens. Unfortunately that was just the beginning of what would soon become our nightmare.
The throat clearing was persistent and I eventually took him to our pediatrician who assured us he must have aspirated a peanut. He had eaten a sundae with nuts in the weeks previous and we agreed she was probably correct. We were then instructed to take him to a pulmonologist for a bronchoscope to remove the peanut. The procedure yielded no relief from his constant throat clearing and left me to continue my concern and fret over what might be wrong.
The next event that was most noticeable was the day he learned to ride his bike. As I began to instruct him on the proper form and safety rules of riding a bike (remember, I’m a nurse), I began to notice him touching his face. First his right cheek, then his left, his neck, his chest and then both knees one after the other. He repeated this action in perfect sequence while I was talking and as I put his helmet on and gave him my last words of encouragement, he became more focused and deliberate on this unusual hand ritual. While this action intrigued me, it worried me more. The realization that something wasn’t quite right kept gnawing in the pit of my stomach and could no longer be ignored. This was just the beginning… it was followed with a series of different habits and compulsions. He couldn’t wear socks with a seam, he constantly smelled any object within his reach, he couldn’t sit still, he laughed inappropriately, he would bark, hum and whistle continuously. My husband wasn’t concerned. He thought they were just nervous habits and that he would outgrow them…
But my son didn’t. People began noticing. Started asking me questions. Questions that I could not answer. The last straw was at his cousin’s birthday party. While waiting in line to hit the piñata, I watched him twitch, jump, and shriek. I saw his repetitive hand movements and the look of panic in his face as he waited his turn to hit the piñata. The closer it got to his turn, the worse his actions became. I knew he was afraid that the piñata would break before his turn and I wondered what his reaction would be if he did not get his turn because I had never seen him act this way before.
At the age of 9 things got significantly worse. I had taken him to his pediatrician who told us he was “hyperactive” and not to worry about it. “He will outgrow it.”
But my son didn’t. It got so much worse. So bad that he couldn’t sit in a chair to get his homework done, he would fall out of the chair laughing and rolling on the floor, making homework nearly impossible. He would write, re-write, erase, re-write, erase and erase when he was doing his homework. Always saying it didn’t look right. Crying because he had erased a hole in his paper. He would sweat profusely trying to do a simple math project. His homework paper was covered in sweat, tears and holes from his erasure. His teacher called to tell me that he could not sit still in class and that he could not stay focused on his work. He had started spitting and barking during class.
I began my own research and started with Obsessive Compulsive Disorder (OCD). The more I read, the more I saw my son, though Tourette Syndrome also caught my eye. My mind went back to his early days when the throat clearing started and his current barking (vocal tics), his many twitches and eye blinking (motor tics). I also noticed in my research that with Tourette Syndrome comes a triad of other conditions; OCD, anxiety and depression. I thought I had my answer.
Hearing the diagnosis of Tourette Syndrome when we saw the neurologist was a relief. I knew I could handle anything that wasn’t a brain tumor or muscular dystrophy or multiple sclerosis etc, or so I thought…
There is so much detail about Tourette Syndrome and how it affects an individual and a family, I cannot begin to go into it all here. It was overwhelming, sad and quite honestly, surprisingly difficult. People stared, asked really inappropriate questions and made my son feel like an outcast. Over the next few years we spent hours and hours of travel going from the pediatrician to the neurologist, psychologist, psychiatrist, therapist and various counselors. Everything you read and know about Tourette Syndrome he had. Corpolalia (using profanity), Echolalia (repeating conversation), and what I call OCD conversations, or constantly repeating a phrase that we had to repeat back to him and it had to sound just right, or the ritual had to be repeated. “Thank you mom, I love you”, “Your welcome son, I love you too”. “Are you sure Mom?” “Yes Son”, “Are you positive?” “Yes”. Over and over and over. His motor tics were also overwhelming: jerking his head, blinking his eyes, kicking his legs, and flailing his arms continuously.
My son developed school phobia. He was moved to Special Education. He stopped playing football. His motor tics became so violent that he separated his elbow and had a pin placed to keep the joint together. He lost his closest friends because he cried all day at school – if he could even go. He was admitted to Clarity Child Guidance Center for two partial admissions and two inpatient admissions because his anxiety and OCD had gotten completely out of control. The hardest part was the Corpolalia. The worst words that you can imagine were yelled out constantly at home, Church, the mall, school anywhere and everywhere. He was even asked to leave a local grocery store because he was “scaring the customers.” Then the depression set in and it hit hard. He cried continuously, he missed having friends, and he was embarrassed to go out in public. If we went to a restaurant, he would stay in the bathroom while we ate because his vocal tics were so loud. It was hard on all of us, but I didn’t notice how hard.
Being a mom, as all of you moms know, I was primarily doing all the footwork. It began to take it’s toll on me in a big way. I cried all the time. I couldn’t carry on a conversation with a friend or doctor without crying. One neurologist told me I had nothing to cry about. “Tourette Syndrome was not that problematic and at least he didn’t have cancer.” I stood up in that doctor’s office, took my son by the hand and we walked out and never went back to him, even though his treatment regimen was promising. His unkind words told me that he had no idea what we were going through and I could no longer trust him. If I were brave enough, I would put his name here because that’s how angry I still am about those words.
Every morning, my daughters heard a very dysfunctional family trying to survive. They heard us during the darkest days of the school phobia and trying to get him out the door. Trying to get him to be normal and fit in like a “normal school student”. Crying, pleading, begging, screaming, cursing, and praying. This was our ritual every day, some days louder than others and some days more violent than others, but never calm and certainly never “normal.” There were days that when we finally did get him to school and we had to have the high school security come out to help us get him out of the car.
In these very hard days I gave my daughters minimal attention. My hours were filled with trying to get my son through the day. I came home from work one day and my oldest daughter came down to greet me. She very sadly wrapped her arms around me and began to weep. She cried uncontrollably and I sat down on the stairs, just holding her in my arms. I was shocked; this was very out of character for her. She rarely brought issues to me or her dad and I wasn’t sure how to react so I just held her. Eventually she said “Did you get my email today?” I had not seen an email from her and the question caught me off guard. She could tell by my questioning look that I had not seen it. She pulled herself away and ran upstairs to her room sobbing. I followed her upstairs and sat down on the side of her bed where she had balled up into a fetal position. At 16 years old I had never seen her so small and alone. It broke my heart. After a few moments of silence she pulled her laptop out from under her pillow and sadly asked me to read her email.
As I sat on that bed and slowly started to absorb the letter she had written, I could barely breathe. It felt as if my chest were crushing and my head was pounding -I have never fainted before but I truly felt like I was about to slip off the bed and onto the floor. The letter was a very in-depth suicide letter that ended with “I can’t take this anymore; I’m not strong enough for this.” My mind immediately went back to the 4K mantra and I looked at her – she wasn’t strong, she was weak. I felt overwhelmingly guilty. I had let this beautiful child down. She needed me and I had not been approachable. She told me that she couldn’t bring her problems to me because I was so busy with her brother, she felt like I couldn’t handle another problem. I immediately took her to Clarity Child Guidance Center and she was admitted for suicidal ideations. She had a well thought out plan and had my husband not been home sick that day and on the couch, she would have fulfilled her plan: to take all of her brother’s medications, which at that time were 12 a day, more than enough to kill my precious daughter.
After that event I realized I needed help to keep me functional. I asked my Primary Care Provider for medication for my own anxiety and depression. A small dose of Prozac did an amazing job and I became a better mom for my children, a better wife and a better employee in my job. So please, moms, know that you have to take care of yourself and don’t be afraid to ask for help. I always say Prozac is my friend and I am not ashamed of it.
My daughter was diagnosed with severe depression, suicidal ideations and bi-polar disorder. How could I have missed that? Was I that out of touch with my daughters? Sadly, I was. As she began counseling, which included family counseling, I began to hear the stories of drug and alcohol abuse. I sat through hours of counseling with tears running down my face. Hearing my daughter say she drowned our problems with Jack Daniels Whiskey, beer, wine and marijuana. There were confessions of being so drunk at the age of 13 that she remembers waking up on a sidewalk outside a friend’s house in the middle of the night. I was so ashamed and guilty that I could barely sit and listen to her. I remember this as being another very dark point in our lives. After her Clarity admission, she was transferred to Laurel Ridge for intensive outpatient therapy to rehab from the drugs and alcohol that she had been using for 3 years. Even remembering this now, I shake my head in disbelief that a mother could let that slip by for so long. I will always feel the guilt from that.
When we began family counseling, my third child, who was doing well in school and maintaining as well as possible, began to show signs of anxiety and depression. It grew worse the older she got and soon she began her own OCD rituals. Touching doorways as she went through them. Locking and double checking locks. The usual things about which you read or hear. I had a long talk with her one night and similar to my older daughter, she hated to burden me with her issues. She felt like she could handle them herself. But, it was not just checking locks and touching door jambs – it was turning around 3 times in a circle before she got in the shower and touching something with one hand and then having to re-touch it with the other and many other compulsions that, after she opened up to me, I began to notice.
There is so much more to tell. I wish I could tell it all because I know it would help so many. People that know our story have told me that I need to write a book and that would be my desire but maybe when I retire. As I finish my story, I would like to remind you of the early statement I made about not liking to work with “psych” patients as a nurse. Being a Christian I can’t help but think that it was God’s way of telling me, “Oh, really? Well let’s see how that works out for you,” because, he blessed me with 3 children with mental illness.
My son is very strong in his faith and says he is, “Blessed with Tourette’s.” He recently had ECT therapy (also known as electric shock therapy) for several months to help with his ongoing depression. It was a great turning point for him and he was able to go to watch a movie with me, which he had not done in many years! We celebrate these small successes and we don’t take the “good” days for granted. My son never gives up hope that things will work out for him.
My oldest daughter has been on two mission trips, one to South Africa and one to Ireland. She has such a giving heart and wants to help in any way she can to those less fortunate. She is in college studying Education.
My tiny Christmas baby has grown into a beautiful young lady. She is a gifted singer whose soulful voice is powerful and strong and she is wise beyond her years. She has dedicated her life to helping those with special needs and works tirelessly in her school with the ALE students (those with special needs). She spends her entire summer at C.A.M.P. Camp in Center Point, Texas, where she is one of the lead staff, making great summer memories with hundreds of children with special needs.
If I seem to be bragging, I am. Because it’s been hard and it’s not over, but we’re alive and healthy because we sought help and continue to ask for help and know when we need to go back for help. We have the wonderful support from our Clarity Child Guidance Center “family” and from our psychiatrist Dr. Soad Michelson.
I will close with this story of hope and faith. When Jacob was at his worst, he was screaming profanities non-stop (even in church), but he still loved sitting on the second row from the front (try picturing this in a Baptist Church). I asked my church family to pray with me over Jacob for 7 days. I’m not sure where the idea came from but it just came to me. I went early to set out chairs in our Family Life Center for the first night of the scheduled prayer service. I set out 10 chairs. Now, my family is 5 people, so I was only expecting maybe 5 more people to join us. By 6:00 people began to arrive. And some more. And then even more. We had to bring out more than 50 chairs (I stopped counting at 50) and I thought of the verse in the Bible that says “Oh ye of little faith.” That was the last time I was afraid to ask for help or feel ashamed at the words my son was yelling. In fact, it brought our church family close for those 7 nights and it made me a stronger Christian in the belief that prayer is powerful. Never lose faith, never stop hoping, and always know there are others that can help you, if you just ask.
I sincerely thank you all for reading my story. Please know I am always here to help. I’m a good listener, a good crying partner, and a really good hugger.
Lisa Sanchez is the Executive Director of Patient Experience with University Health System. She has been a Registered Nurse in the State of Texas for 31 years. She joined University Health System in 1988. In addition to working as a bedside Registered Nurse in the Emergency Department as well as Medical-Surgical Units and Ambulatory Clinic settings, Lisa has also served in leadership positions in each of these areas. She has been in her current role as the Executive Director of Patient Experience since 2011.
She was the Sigma Theta Tau International, Delta Alpha Chapter at Large – Ruth F. Stewart Image-maker Award Winner in 2010, for her notable contributions to nursing and the image of nurses. She had been the Employee of the Year for University Health System twice once in 1996 and more recently in 2013.
She is married to her husband Abel (23 years) and they have 3 children ages 22, 21 and 17. She is an “advocate mom” for Clarity Child Guidance Center in San Antonio and speaks often to different groups about her children’s struggle with mental illness.
Thank you so much for sharing your story, Lisa. I am humbled by your family’s strength, perseverence, and faith. God bless you all!
Thank you for sharing your family’s story, Lisa.