I am Val, a registered nurse, an independent contractor, and a writer. Most importantly, I am a mother: to Jess – an adult with multiple disabilities including autism and cortical vision impairment, to a son in his final year of Neurology Residency, and to a daughter who is an American Sign Language Interpreter.
In 2015, I began blogging as a way to tell Jessica’s story. It is a way that her voice can be heard, and that we can spread her joy. It wasn’t long before I realized that blogging is therapeutic for me and allows me to connect to many wonderful people. The many supportive and encouraging messages that I receive from our followers fuel my sense of purpose.
My biggest goal with blogging is to take some of the mystery out of what it will be like when special needs children grow into special needs adults. I want to let others know that this life can be good – fulfilling and rewarding.
My life has not been easy. I survived by taking it one day at a time, and sometimes one hour at a time. Throughout my life, I struggled through depression and had low self-esteem. I was a young mother – having all three of my children by the time I was 24-years-old.
While my children were young, life was hectic day in and day out. I quickly lost a connection with the norms of the outside world. I could no longer relate to friends, neighbors, and even family. You could almost say I was lost except that I’m not sure I was ever found to begin with.
My entire adult life had consisted of parenting. Not only that, but special needs parenting, and sickly kids parenting. I functioned as a parent and a spouse only rather than as an individual. I struggled to find, understand, or establish my own identity.
Fast forward many years and we had a house divided. I was empty inside, having given all and having nothing left. At that point in my life, survival depended on establishing self.
One thing that had bothered me for quite some time was that I had not obtained a college degree. I come from an educated family, and it was important to me to complete a degree. So, right after moving into my own house, I started in a full-time nursing degree program. Just under two years later I graduated with my Associate of Science in Nursing, and a few years later went back to complete my Bachelor of Science in Nursing.
I am very proud of that achievement. My nursing career played out in a hospital setting, mostly on a cardiac telemetry unit. Life there was stimulating, fast paced, stressful, rewarding, and often sad. I loved having a career – my first ever. Nursing was the right path for me.
At the same time, I was trying to get Jess squared away with care. I eventually left my cardiac unit and tried taking a new position at the hospital to have different hours. Then, I tried a clinic job closer to home. However, in our quest to get everything aligned, we continually experienced failure after failure. It was truly disheartening and not something I had ever considered would happen.
My only option became giving up my career to take care of Jess myself. What would people think? I was so worried about that question. Would people look down on me? Would they think I was lazy, or that I never tried, or that I just didn’t want to work?
Embarrassed and defeated. I wanted feedback from my wonderful family but I was even worried about what they would think. With dread, I separately talked to my parents, my brother, and sister. I can’t describe the validation I felt when they were 100% supportive and expressed total understanding.
Did I expect less? No. It was how sincerely heartfelt their support was that moved me so.
I started blogging not long after that. Looking back, I can see that my early posts were all about making sure everyone that took the time to read it would know how hard I tried – that I hadn’t just given up. But through those blog posts, I was the one that learned. As I did my research and read my own writing, I was reminded of the depth of my perseverance, my effort, and my strength. It was only then that I accepted that I did absolutely everything I could, that my life has been more difficult than most, and that it is not my fault.
Something wonderful happened in the process. I forgave myself and allowed myself to see the individual that I am, to recognize my good qualities, and to acknowledge my own talents. I found within myself an individuality that I had never known. There are things I enjoy, and I realized that it’s okay to take time to enjoy them and that I do not have to take every single moment of my life try to fix things for Jessica.
Above all else, please hear me when I say that we have a blessed life.