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!