We have all heard about the necessity of being your own best friend, having self-appreciation, and the importance of performing self-care. Even the Stuart Smalley character from the comedy show, “Saturday Night Live” stressed the importance of saying daily affirmations like: ” I’m good enough and I’m smart enough, and doggone it, people like me!” Not everyone will like us, and visa versa, but that’s OK. As long as we are alright with who we are and our place in the world, the rest are just details. We are the cake and our friends are the icing on it; it’s a major bonus when we have been fortunate enough to have been blessed with true friends, you know, the ones you can count on your one hand. But even with such a priceless gift, there will still be times when we will be on our own. Our special children are often the main reason for that. Illness, behaviors, our own exhaustion, and depression. Winter is just around the corner and with it, an extra layer of isolation, darkness, and sadness.

I know that I am effected by Seasonal Affect Disorder, ( SAD), or the ” winter blues”, usually peaking by the middle of February, when we are stuck at home due to illness, bitter cold, and snow. My self concept is negative. I don’t feel good or smart enough; I actually feel depressed and hopeless. It took me a long time to realize and understand the connection between mind and body, and what I was literally feeding my mind and body with, was not healthy. A bad habit of negative self-talk and junk food, created the perfect storm. Not replacing this self-imposed destruction with kinder options. I didn’t even realize at the time how deeply ingrained these bad habits really were and how much they were truly hurting me. Familiarity is always the safer way to go, change can be too scary and painful, until you are on your knees, desperate, which is exactly where I ended up. I have made changes slowly for the better over the years. I feel well most of the time and have changed my mental perspective to a healthier one by my choices and with prayer, once day at a time. But it will always be my Achilles heel, a constant work in progress. This self-awareness helps me now to better prepare for the return of my least favorite season, but instead of succumbing altogether to the depths of despair, I have learned to fight back. In the process, I have also learned how to actually enjoy being with me, myself, and I. A silver lining that has served me well year round.

It’s funny how you can feel alone in a crowd or not alone when you actually are. Or how about not feeling alone in a crowd or feeling alone and there is no one there. We have all felt all of the above, and I think these scenarios are particularly heightened with a special needs child. I have definitely felt alone, even when physically with other special families, but simultaneously quite content when by myself. I have also felt very connected and engaged with others when in a group setting, as well as quite lonely when home alone. Sometimes my reaction has to do with what’s going on with Brian that day; a challenging day tends to exacerbate the feelings of loneliness and isolation, even when in a crowd. A lack of sleep is also a major game changer. Or I might be internally triggered by a comment or something that I see. I try not to make comparisons, keep a positive attitude, and be objective. But we are all human and in the special needs world, parents are already profoundly affected by their child’s disability, in all ways imaginable, for better or for worse. It would stand to reason that our perceptions, reactions, and feelings to situations that involve our kids will be the same at times. I know mine have been. Yet, other times our opinions regarding our special children couldn’t be more polar opposite, even when discussing the same disabilities. Sometimes being in this particular position with other special parents is very uncomfortable and may cause us to shut down, lash out, or be misunderstood. It can happen to the best of us, regardless of our good intentions.

We special parents really need to give ourselves permission to “agree to disagree” with others, make mistakes, and to practice self- forgiveness, the very same forgiveness that we would hope to offer others. Eventually, we will disappoint our children, our families, our friends, and ourselves and certainly visa versa- this is a guarantee! It’s really hard to forgive sometimes and it’s a process that requires time and perspective. Interestingly, I have personally found that it is easier to forgive when I apply the same criteria to myself: I make many mistakes, but I’m still good enough. My foibles show just how human I really am, but it doesn’t define who I am. I know my strengths and weaknesses and have come to love them, even poking fun at my weaknesses! I believe wisdom is one of the gifts of middle age and I appreciate it greatly! These realizations have helped me to find contentment whether I am alone or with others. Years ago, I could never imagine being happy with self-contentment, in fact, it would have been unimaginable and a tragedy! I needed others to define my worth back then. Today, I LOVE having time to myself; I enjoy my own company, as well as genuinely enjoying being with others, especially those who I share commonalities with. I have learned in the course of my special needs journey that you will not be friends with all of the special parents with whom you encounter along the way. As a matter of fact, if it weren’t for our children, there wouldn’t be any connection at all, yet, there can be still be value in those interactions. Perhaps you will learn something important that will help your child or that individual was placed in your path at the right moment in time to teach you a valuable life lesson. I have definitely experienced such moments over the years and have come to appreciate them for the gifts that they truly are. And THAT is truly enough!

Rain or shine, snow or sleet, alone or together with others ,I continue to learn the beauty, pain, love, and richness of the human experience in this thing called “Life”, particularly influenced by the special needs journey with my beautiful Brian, yet, I am not ultimately defined by my son. I am still Me, Myself, and I , an eternal work in progress, whom I’ve come to know and love over the years and, yes, that’s good enough for me (us, lol 🤣)!

Until we meet again, thanks for reading! 😊

Last Summer, a wonderful biography was released in the movies about Fred Rogers, the beloved host of “Mr. Rogers Neighborhood”. He was a man who was incredibly gifted in deeply connecting with children from all backgrounds via a daily TV program on Channel 13 in the 1970s. It was a delightful film that showcased the heart of a man who truly loved to bring happiness to kids and to make them feel important. Mr. Rogers communicated daily to his young audience “you’re special!” and meant it with his whole heart!I believed him wholeheartedly myself while watching this film. I was particularly moved by a scene in the movie where Mr. Rogers was interacting with a physically disabled young man. It reminded me of when two best friends get together. There was genuine interest and love and no one else existed in that moment. No wonder Mr. Rogers was so beloved amongst so many children back then! The values of love, kindness, respect, and compassion that he taught through his daily shows are still the things that all children ( and adults) desire and respond to; it is a part of our human makeup and never goes out of style! One could definitely conclude that Mr. Rogers was indeed a very special person, although I don’t think he would have necessarily thought that of himself. Yet, his connection with thousands of children over the years via his TV program leads me to believe that he certainly was extraordinary.

Disabled children and their parents are often referred to as “special” as well, though I honestly see nothing “special” about disability and it’s many components. Brian was born with Down syndrome and later diagnosed with autism. Both of these developmental disabilities cause several consequences that require medical, educational, and social interventions and always will. Don’t get me wrong- I understand why people say: ” Brian is such a special boy” or ” You and Jim are such special parents”. It is usually meant sincerely and with the best of intentions. In fact, if the shoe had been on the other foot, I don’t doubt that I would have said the same exact thing; I’m sure I would have! Yet, from my vantage point, I can tell you that there is nothing at all ” special” about my son’s disabilities or his needs. Brian’s requirements just happen to be a part of who he is. We choose as his parents to help him as best we can. We often make mistakes. We become weary working on the same goals, year after year. The fear of Brian’s future when he becomes an adult looms over our heads like a Damacles sword. And the inevitable time when Jim and I are no longer here: what then? The list goes on and on. In the early years, we were extremely overwhelmed and afraid. Today we are sometimes still overwhelmed and afraid. Raising children is certainly a faith walk, whether they are disabled or not, but the physical, emotional, social, and psychological needs of kids like Brian are generally more intense and for a lifetime. It is certainly not a journey for the faint hearted, yet we as parents, and especially our children, persevere and are amazingly resilient, as the human spirit often is.

I often think about how do we parents and our kids go on, day after day, year after year?… Sometimes people will say ” I don’t know if I could parent a disabled child”. Jim and I weren’t sure either, especially in the early years. But what choice do you really have? This is your flesh and blood, the child that has been given to you. Yet, I learned a few years after Brian was born that an acquaintance had chosen to give away her baby boy with Down syndrome. At the time, I confess I was appalled that she would do such a thing. She knew about Brian and it didn’t make any sense to me why she did not want to keep her beautiful son. Over time, and in the experience of caring for Brian, I came to understand that not everyone is capable or wants to raise a disabled child. It is a choice that some people make. For those of us who do choose to raise our disabled children, we have a lifetime journey ahead that requires strength, courage, grit and a sense of humor. The latter has served me well when things are really out of control and the former three have been modeled by our beloved Brian who is Strength and Courage Personified. Raising Brian is difficult, yet rewarding, sometimes painful, often tiring, and incredibly loving. I can’t imagine life without my son; I have the privilege of being Mom to the sweetest soul I know. I have never known such a pure, unconditional love. This love sustains me in the challenging times and ultimately encourages me to pick myself up and move forward again and again.

For my husband and I, we choose to walk by faith when a lot of things don’t make sense in our lives, especially when it comes to aspects of Brian’s life that we have no control over, which is pretty much everything! We exercise our free will in making the best choices that we can for our son’s well being in all aspects of his life. We have learned tremendously from many people over the past 16 years, who we believe were put in our lives for a reason. I am forever grateful for their help, support, and encouragement and don’t know what we would have done without them! Some of these individuals were in our lives for just a season, while others have become our friends. Either way, we are the better for it. The support and love from our extended family has also been a great comfort and encouragement both in the good and bad times while raising Brian. It means more than we can ever say.

Jim and I don’t see ourselves or Brian as special, rather, we are just ordinary people placed in extraordinary circumstances. We wish Brian didn’t have to endure the multiple consequences of his Down syndrome and autism for the rest of his life and would have certainly preferred if he could have avoided it all together. Since we can’t change these facts, we have chosen to change our perspective on his situation, one day at a time… We choose to focus on the positive, (most days) when we don’t always feel like it. We are realistic about Brian’s challenges and their implications on his life, but remain hopeful. We celebrate every small achievement, because it’s too important not too! We remind ourselves how faithful God has always been in providing for Brian and will continue to be. We choose “an attitude of gratitude”- it does not come naturally to us at all, but over the years we have made a wonderful discovery that there is always some reward and a peace when we decide to be grateful, no matter what. It’s like exercising a muscle, the mind also becomes conditioned by what you focus on after a while. We choose to count our blessings and discover that we really have so many! When we fall, we get up when we are ready, which happens quite often. We give ourselves lots of slack when we make mistakes. We try to take care of ourselves so that we can take care of Brian- he is depending on us to do that . Eating better, taking naps, laughing a lot. Doing whatever it takes, whenever we can, to make our extraordinary lives just a little more “ordinary”. Simplicity is great and definitely underrated! I am grateful for any and all of these moments and will continue to seek them always. I’m sure Brian will thank me for that! 😊

Until we meet again, thanks for reading!