For the past several years, I have written and shared about my experience of raising my son who is medically fragile. What I haven’t shared is what the diagnosis has done to me and my mental health. I think it has been touched on in a few blogs, but today I want to get into the nitty gritty of how debilitated I became by anxiety. It also helped me reach out for help, get the proper diagnosis, and medication to help improve my overall mental function.
My son came into the world on October 11, 2012. He had the coolest birth date 10/11/12. I was so excited to be a mom. His labor was painful, and he was sick when he arrived. We stayed in the hospital for 38 days. Living in the NICU was very challenging, and my anxiety was through the roof. I had a difficult time understanding what was going on, the words doctors were using, and the gravity of the situation. I ended up persuading the physicians to let us go home. In retrospect, this was a mistake. He should have stayed in the hospital longer. They were just beginning to identify his issues, and I was so tired of the hospital I forced their hand. We came home, and we were back in the hospital within seven weeks. This time he was near death. He spent days on life support and almost died a few times. He was bagged back to life more than one time. We finally received the diagnosis, and we had a plan for how to manage his care at home.
I was naive about the magnitude of the disease. The doctors said as long as he got his medication, he would grow, learn and hopefully thrive. They did expect him to have delays due to the severity of the illness, but they expected him to recover. He didn’t recover though. He wasn’t a good eater, he missed his milestones, he was sick all the time, and I became a mess. I was trying to work and care for him. It was very hard. He could not be in daycare due to his medical status. We had trouble finding consistent care for him at home. We hired a few nannies, but we couldn’t keep one longer than a year. We were constantly in and out of the hospital, adding doctors to our list, and he was falling further and further behind. I couldn’t keep up with the demands of his health and my job. I worked, but could not focus on anything but him. Eventually, I abruptly quit my job, when I could no longer manage the stress of it all. At night I would cry, stay awake in a panic, and find any way to make the pain I was going through to disappear. I tried everything to make myself feel better. I ran, I worked out, read books, journaled, blogged, sought to connect with other people going through it, but nothing seemed to work.
It was impossible for me to make friends with parents of other children. I could not identify in any way with a parent of a typical child. I angered easily, I lashed out, and I got frustrated at any mention of another child’s success. I found it impossible to talk about anything but my son because our entire life felt completely out of control. Every single day I was fighting a new battle. There was always a new diagnosis on the horizon. We rarely went to appointments and received good news. Every evaluation he had, he was further and further behind his peers. I started to blame myself. I thought it was the antidepressants I took, or maybe something I ate when I was pregnant. I figured it was because I forced him out of the NICU too early. I lived with the massive guilt every day that I had created all of his issues. My anxiety was through the roof caring for him. I wasn’t sleeping or eating properly.
In the midst of all of this, we moved to a new home, to a new town and a place that was a unique world. We moved from the city to a small town on the outskirts of the metro area. It was beautiful with rolling hills, and farms all around us. We had dirt roads near us, lakes, and wildlife everywhere. We felt it would be the ideal place to raise our child. I was eager to start fresh. I wanted to make friends, but I found it extremely challenging to find people I had things in common with or understood my quick tongue, quirky jokes, and short attention span. In the city, it had never been a problem to find like minded people. I felt almost stuck when we moved. As I navigated the social circles, I realized very quickly I did not fit in. It wasn’t for lack of trying on my end. However, anytime I’m forced into a place I don’t belong I always find ways to blow it up. My tongue gets the better of me, my words can be harsh and mean, and I isolate and find the means to push people away.
I sabotaged and destroyed relationships with so many people. I started to realize it wasn’t them but it had to be me. I felt isolated by being a parent to a medically fragile child, and I felt more isolated by being a square peg in a round hole of the community. Over time I did meet people that understood me. I met friends through a church that accepted me in my messiness and accepted that I made mistakes. They supported our family, were there for us in times of stress and doubt, and they checked in with me to make sure I was doing ok. A friend reached out one day. It was out of the blue. I remember it distinctly because I wasn’t expecting it. It was a long message about how she felt connected to my heart, my soul and that she could tell we had much in common. She extended her heart and friendship to me, and she has never let go of me since.
It was through this friendship that I was able to unload my pain, my anxiety and the depth of my feelings I had experienced. I was able to share my heart, and I was able to have someone validate my experience, listen to me, and it made me realize I wasn’t alone. I started to have confidence in my ability. I joined a Yoga studio, I started meditating, I cut back on drinking and poor eating, and I began to look inward. I realized that even though we were in a very stressful situation with my son, my reactions to everything around me were inappropriate. I reacted to people with a hair trigger response. I said things as soon as they entered my mind. I had anxiety about being around anyone. More and more I isolated myself from everyone around me. With encouragement from my husband and friend, I sought out professional help. I had been through therapy in the past, and I enjoyed the experience. I was terrified this time though. I walked in the door and dumped my feelings on the floor.
I had expected for this just to be talk therapy. The doctor looked at me and said, “I don’t think you just have anxiety. Everything you describe sounds like ADHD.” I thought to myself, “No way.” I cataloged through my life and I realized I have been dealing with the effects of ADHD since childhood. I was socially awkward, I was hyperactive, and as a teen I had horrible self esteem. My whole life I was impulsive, I spoke without thinking, I was self-involved due to high anxiety, I could not focus on anything, I regularly lost my keys, my clothes, my water bottle, and I could never turn off the rambling noise in my brain. I self-sabotaged relationships. I constantly angered people around me with my verbal impulsivity, and nothing in my house ever seemed to get done. I had a revolving door of friendships because the anxiety of getting close to anyone and admitting my messiness terrified me. I hated being in groups of any kind. I had trust issues and lacked the ability to keep my cool with people that thought differently than me. It finally became apparent. I did have ADHD.
Through extensive testing, my therapist diagnosed me with combined type ADHD. I was prescribed medication for the anxiety, and I will start doing therapy to work through behavior modification. It has been an eye-opening experience for me. As the medication is beginning to work, I am starting to see the litter of damage my choices and mouth have created. I am starting to see all the people along the way I hurt, but more than anything the individual I hurt the most was myself. My self-doubt, myself talk, my impulsive choices, and my inability to behave appropriately has ruined my self-worth and self-esteem. I have destroyed relationships, and I have been hardest on myself. While I cannot change the past, I now feel like I have the power to improve my inner peace. I think by improving my behavior, I will, in turn, improve how I treat others and how I deal with myself. I’m hopeful I’ll be able to manage the care of my son with more organization and clearer thinking. He needs me at his best. His life is always going to need someone to assist in his care, and until he’s 18 years old, that person is me.
While it took me 38 years for my diagnosis to come to fruition, I credit my self-destruction and my son’s illness and moving to a small town for truly making it all come to light. I would never wish what I’ve gone through on anyone, but somehow all this destruction has created the opportunity for me to have a more fruitful and bright life. I use to look at my son’s life and feel paralyzed in fear. Today after starting medication, I no longer feel paralyzed. It will never be easy raising a child with a life-threatening disease and autism. However, with drugs, professional therapy, and support of my friends and family I believe I can do anything.
In closing, if you have found yourself to the end if you are struggling with mental health issues. Please seek professional help. I did everything but ask for help. I tried everything on my own. Listen to your body and your mind. Try to take inventory of what is going on around you. If you find a lot of chaos in your life, typically there is one cause of the mess – that is you. It’s ok to admit you need help. I am so glad I did. I finally feel free and clear. I hope you can too!