My Teacher, My Son

We parents can never give up on our special children, for they will always count on us, but this charge comes at a huge price… Once upon a time, long before having Brian, I traveled to many places, lived in a foreign country, and had a lifestyle that afforded me many freedoms, that at the time I took for granted. I came and went as I pleased, being accountable to no one but myself. If I didn’t like a situation, whether it was a personal relationship, a job, or any life experience, I simply moved on. The world was my oyster back then, so I made sure that I lived my life to the fullest. It was a season in my life that I will always look back upon very fondly.

I have no regrets, in fact, I’m so glad that I took advantage of the opportunities that came my way back then; I saw places, met many interesting people, and worked in various capacities that taught me so much about business, education, myself, and what I was capable of and how much I needed to learn. Little did I know how much of a skill set I would need to acquire years later when Brian arrived into the world… my new vocation as a Mom would test me to the core in ways I could have never imagined..

If someone had told me back in my swinging single days that I would one day be a mother to child with severe disabilities, I would have said, ” no way, not me”. This didn’t happen to people that I knew. While I was certainly aware of disabled children and had worked with them in summer camps (and had also babysat a young woman with Down syndrome when I was 13 years old), I never thought I would have a disabled child of my own- this only happened to “other people”. There is a reason why the future is not revealed to us and then there is also ” our plans” versus God’s plans. Little did I know how much my world would be rocked when I slowly realized that I actually was one of “those” people who I never wanted to be, especially in the beginning when Brian was first born.

It was very painful in those early days and all of my fear and selfish, self-centered impulses rose to the surface. I felt like a victim: it wasn’t fair to have a baby with so many challenges that would last for a lifetime. I was overwhelmed, defeated, and exhausted. There was no doubt that post-partum depression was playing a significant role at the time, as well as incredible, suffocating fear. I felt angry and guilty at the same time, but of course my beautiful baby boy didn’t ask for any of his many challenges either. Yet , even at a very early age, Brian showed incredible resilience and grace under fire and continues to do so today. Everything medically, sensory-wise, developmentally, that Brian has and will continue to go through for the rest of his life has been handled by him like a champ. Yes, it is very hard for him sometimes and he will make his displeasure known, but Brian also knows how to move forward and get on with his life in his inevitable joyful way. He doesn’t hold a grudge, nor does he act like a victim, and he never will. These things are not a part of who he is; his spirit and soul is and always will be pure and good.

Brian has been my teacher, as much as I have been his Mom, and for that, I am truly grateful. Brian has taught me extraordinary things about patience, grace, and resilience more than anyone I have ever known, mostly by the way he lives his life. I have not always wanted to learn these valuable lessons, and there are definitely still many days when I become frustrated and feel burdened by the weight of Brian’s disabilities. I also still get whimsical about my single days during some of these difficult times for sure, yet…..I can’t imagine my life without my beloved son, despite the hardships, the pain, and the fear. For with every challenge that Brian presents, there has always been an accompanying gift, one has never existed without the other. My parenting experience has been rich, bittersweet, painful, joyful, frustrating, and really just the most wonderful experience of my life. It’s incredible that such a dichotomy can exist, but it really does for me!

I have met terrific people and experienced a deep love that I never knew I was capable of giving because of my son. Brian has taught me great compassion for him, myself, and others. He has also taught me humor, appreciation, celebration, and a joy in all things great and small. Brian has also given me his perspective on what is truly important in this life and how not to sweat the small stuff. Brian has allowed me to make my mistakes; he has seen me fall down, broken and bruised, but offers his unconditional love and death grip hugs like no one else. Finally, Brian continues to model perseverance and endurance daily, just like a soldier off to the battlefield with an amazing grace. His life is not easy, but it has rich meaning and purpose that he has come to love and enjoys. This is EVERYTHING to a parent, for in the end, we just want our children to be happy and healthy.

Raising a disabled child is definitely not for the faint hearted and it is truly a marathon for life. It’s a huge weight, responsibility, and an overwhelming thought, so I tend not to dwell on it too much, but am certainly aware of the implications. These days I’m traveling more around town than around the globe; life has definitely become much simpler, yet simultaneously complicated. My husband and I know that many more challenging days are ahead, but there are also many good moments to look forward to as well. We choose to eventually accept the harder times, for in doing so we become stronger. There have been many wonderful moments with Brian as well as harrowing ones. Both good and bad days have taught us perspective, endurance , appreciation, and hope- all because of the love of a beautiful boy who brought out the best in us and helped his Mom to finally grow up. ❤️❤️❤️

Until next time, thanks for reading, 😊

A Daily Resolution I Can Keep

One of the things we did over the holiday break to keep Brian busy was to walk around some of the local ( and not so local) shopping malls. In recent years, Brian has learned to really enjoy going on these excursions. It’s not for the shopping, rather, he loves to engage with fellow shoppers with friendly greetings. Specifically, Brian likes to wave at others and in many instances, go up and shake hands. In the past, Brian would attempt to hug instead of handshake, often to the surprise and sometimes to the chagrin of the surprised shopper. Teaching more appropriate social behavior in public took time and lots of practice, but eventually Brian learned to limit his legendary hugs to family members and friends only.

Handshaking with strangers is an entirely different matter. We are trying to help Brian replace handshaking with hand waving, but similar to the hugs of the past, this is also taking time. Eventually, Brian will get there, but we are certainly in transition at the moment. Case in point, during our 4th shopping mall excursion on New Years Day, Brian kept walking up to strangers to shake their hands, while I was trying to redirect him. Most people were obliging and very nice, but understandably, there were those who did not appreciate my son invading their personal space. It was during such moments that Brian would become frustrated and my heart felt sad for my son. How do you explain necessary social graces to a sweet soul who is so pure of heart? It is this same exact vulnerability that also makes me so afraid for Brian’s safety, a lifelong concern that all special needs families share regarding their children.

I admit I was quite weary by New Year’s Day. It was Day 12 of the holiday break. We kept Brian as busy as we could during the vacation, but I was counting the hours until the school bus would come the next morning. My patience was starting to wear thin after a while, as I attempted to redirect Brian from shaking hands with everyone at the shopping mall. It was part comical, part crazy, yet, I could see the genuine joy and energy boost that each acknowledgement from a shopper gave Brian. He really loved the interactions and his joy was palpable. I could also see that the feeling was mutual for most people. Brian received many accolades from ” Hi Buddy” to “Is your son running for Mayor?” to ” high fives” and genuine smiles. One woman had tears in her eyes when Brian came up to her to shake her hand. She told me that encountering his beautiful spirit was the best moment of her day and wished us well. That was powerful and made me think of how our interactions with others can make a genuine impact for better or for worse. It also made me think about New Years resolutions in 2020 and what I can actually resolve to do more of.

Traditional self-improvement resolutions have never worked for me, as I historically give up within a few weeks of making them. In the end it’s not meaningful enough , hence, why I’m not motivated to stick with whatever I determined to give up in the first place. Perhaps my thinking on resolutions has been wrong all along: rather then focus on what I should deny myself of, how about making a conscious decision to give myself and others daily kindness? Simple, random acts of kindness that come from the heart do make a difference for both the giver and receiver. It costs nothing but your willingness and everyone benefits. Kindness can take many shapes and forms and can transform the minds and hearts of those it touches. Daily acts of kindness can be anything from a surprise note, phone call, or text, to sharing of resources, time, or your listening ear. Or as Brian does so well: extending a smile and a hand in kindness with a genuine joy in the world of the walking wounded. Each one of us will experience hardships in life that have the capacity to derail and disarm our joy, but a true kindness will always renew our strength to forge ahead.

One random act of kindness per day translates into 365 acts of kindness per person,per year- can you imagine how many more with determined resolve? The ripple effect would be phenomenal and so meaningful, much more than never eating chocolate again, which I certainly can’t do anyway. But I can resolve to do at least one act of kindness per day, simple or extraordinary, because it’s the right thing to do. I want to make a difference for the better, just like Brian does so well, with one smile, wave, and often one handshake, at a time..

Happy 2020! May your new year be filled to the brim with random acts of kindness, both given and received. Until we meet again, thanks for reading!