My Son Is Not His Disability

  • While conducting a business transaction for Brian’s special needs trust the other day, the bank teller assisting me commented how tragic it is that Brian was born disabled-whoa! I was not expecting this at all!  How often have you heard someone say that?!

I have learned over time, by my own mistakes, and with experience,  to consider and process what is said when someone makes a statement about Brian’s special needs, THEN respond.  I was prepared to address the comment, but wanted to do so in a way that was informative, without being defensive. Sometimes in the past I have reacted, instead of being reflective first, depending on the day, a bad night’s sleep, or whatever the Challenge Dujour was. 

I first showed the teller a picture of my beautiful boy, speaking of his many virtues, despite the hardships and challenges that his disabilities bring. I could see by this woman’s reaction that she honestly had no idea that a marriage of disability and happiness was even remotely possible. She was teary-eyed when she confessed that she didn’t realize that blessings could coexist with disabilities. It was a powerful moment for both of us, as I experienced my own reminder of how special our kids truly are. They have a lot to teach the world about who they are, what they CAN do,  and what they give so freely:  unconditional love, total trust, and a child-like wonder that warms the heart and inspires the soul. It took a long time for me to really believe these things about Brian, as once upon a time, I was more focused on his limitations, instead of the wonderful person that he is. 

When Brian was first born, I, like the bank teller, also felt that his disability of Down syndrome was a tragedy. I was overwhelmed and felt totally unprepared, despite being a special educator. I also felt out of control, out of my league, and certainly out of my comfort zone. I had really hit a low point when Brian had open heart surgery at 3 months old. The surgery was the longest 4 hours of our lives and I remember subconsciously not wanting to hand Brian over to the surgical nurse prior to bringing him into the  OR. My husband had to gently encourage me to release our baby, which began the surreal 9 day journey in the hospital. The surgery  itself was a success, but those early years were just a whirlwind of  one medical or developmental challenge after another…

 It’s hard to believe today that Brian was once so vulnerable and helpless, this strong young man who now eats nonstop!  His remarkable recovery  from the heart surgery and eventual discharge from the hospital  was the first of many examples of Brian’s strength and resilience that he has and continues to demonstrate each day. 

When Brian was diagnosed with autism at 30 months old,  we were absolutely devastated by this additional diagnosis, but at least we finally had some answers to the questions that had plagued us for  several months regarding Brian’s unique development. It has been through both joyful times  and some of these  most difficult trials over the past 14 years that my heart and perspective have been gradually transformed for the better. 

Along the way, we have met wonderful families and professionals who share their experience, strength, and hope with us. These gifts have sustained us through hard times and have given us great opportunities to socialize and have fun through a plethora of activities. Brian lives a good life that has meaning for him and gives him joy! These are things I like to share with those who are curious to know who Brian is and  what our dynamic as a family is like. I appreciate the opportunity “to spread the word’ that our  son is a person first, with preferences, emotions, and abilities, just like everyone else!

While I may be teaching others a lesson or two about our son whenever the opportunity presents itself, Brian teaches me daily through his hugs, wants,  joy, fear, transition troubles, sensory issues, etc.  the most important life lesson: how to love and to be loved! My son is not the sum of his disabilities; he is a gift from God and my greatest teacher. Brian’s joy is contagious and his hugs are as huge as his heart. He lives and loves authentically, he is my hero and my heart…❤️❤️❤️ That’s what I want the world to know!! 

Until next time, thanks for reading! 😊 . 


Losses And Lessons Learned

Brian and I just returned from a fun weekend at the Great Wolf Lodge in the Poconos, PA. If you have never been, I highly recommend it- Water Nirvana everywhere! Brian couldn’t get enough and would still be there if I didn’t physically prompt him to leave! 🤣 We were waterlogged and weary by the end of Day 3 , but so happy for the opportunity to try something new. I was so proud of Brian for handling like a pro most of  the changes and transitions that an experience like this offers.  You just never know how a major change in routine and environment is actually going to go down until it’s showtime! These factors can be a major challenge  and very stressful for special needs families. I was on my own for the first time with Brian, as Jim was away in Japan on company business, so my anxiety level was quite elevated. Brian is a young man now, taller and stronger, and  not as easy to handle, especially during a meltdown. Predictably, the initial transition into the facility was difficult and overwhelming for a few minutes, but the  supportive Lodge staff, amenities, and  promises of a gizzillion gold fish crackers, iPad privileges, and swimming  eventually helped and WE WERE IN!!! Phew!

During the course of our stay, we met up with other special needs families, as well as families with typical children. It was such a great experience to meet folks from the tristate area who share certain commonalities, and just as interesting to meet others in which there were no similarities whatsoever. It was during one of Brian’s difficult transitional moments going from one part of the water park to the other that I was approached by a woman who I quickly surmised had a very different journey than mine. Our conversation went something like this:

She: ” I’ve been watching you in awe  for the past few minutes and don’t know how you do it”.

Me: ” Do what?”

She: “Manage your son like you do.”He is so adorable, but strong, that’s got to be tough!” Are you here alone?” ” I give you a lot of credit, I could never handle what you have to, you’re such a great Mom”.

Me: ” Thank you, I’m sure your right about that, excuse me, have a nice day”.

I have had similar conversations periodically in the past with other parents. Most special needs families that I know have had them too. I don’t fault people for their fascination with Brian and I understand why they ask a lot of questions. He is a very cute and curious creature! But this time, it was the “pity pat” on the shoulder and The Look, you know what I mean, it’s the ” I feel so sorry for you”- that  triggered very unexpectedly those feelings of loss and sadness  that  I thought I had resolved a long time ago….

Everyone has or will face major loss at some point in their life. Losses can vary in size and scope and are painful. Losses create sorrow, cause grief, and can test our very character. Brian’s arrival into the world was a simultaneous mix of elation and deep sadness. Delighted to blessed with such a beautiful boy, yet grieving the loss of the dream that we had hoped for. Feelings of guilt and shame for even saying such things. Oh, those early days especially were a cesspool of fear, doubt, and anger- why him? Why us? Overwhelmed by the medical needs of  our baby who needed open heart surgery and so much more… those losses were deep and profound. So many times I just didn’t want to feel the pain anymore, so I immersed myself in the world of being Brian’s Advocate and Medical Director. I didn’t have time to feel sorry for myself, there was just too much to do.

We eventually moved to our current town. Eighteen months later, my husband lost his job and was out of full time work for over 3 years.  I was diagnosed with colon cancer less than a year after Jim lost his job. Brian had severe sensory issues back then and was having difficulty settling in at school. Multiple school visits, conference calls, surgery, chemo, and job interviews. No time to process these losses, too much to do!! Keep on keeping on, hang in there, keep the faith,  and all those other platitudes that are well-intended and are meant to be helpful. 

Predictably, the “crash and burn” phase inevitably occured, because major losses in life can not ultimately be ignored. You can run away from them, play hide and seek with them, but eventually the grief from the losses will get you and of course it’s at the most unexpected and least desirable time. Funny how that works. My showdown with grief and loss occured long after Jim had finally landed a good job. Brian was in an appropriate school placement, and my cancer was history. It was a dark,  terrifying depressing time, like being in a deep hole with no lifeline. I thank God for counselors and medications! Eventually  the sun came out again, but the struggle never really goes away..

There are several lessons I have and continue to learn about losses and grief: 1. Both are an inescapable part of life 2. Don’t deny them, lest you pay a heavy price, 3. You are stronger than you realize, 4. You will be refined in the fiery furnace with a new armor of compassion for others, 5. You may lose an emotional battle, but you will ultimately win the war! 6.  Grief can easily be triggered when you are reminded of old losses, but these moments are also an opportunity to see how far along you have come despite them, 7. You never walk alone- God and His resources are there to help you, now and always…

On a final note, I have learned through experience and mistakes what NOT to say when I see others going through a major loss:

1. I understand what you are going through-( how is that even possible?)

2. Everything will work out just fine-(Well,  that’s not always true. Life is sometimes not fair).

3. Try not to worry- give me a call if you need anything- Of course, you worry, you’re human! And the person struggling will never call, by the way.

It’s understood when people say these things that they have the best of intentions and don’t know exactly what to say. Consider the following in lieu of platitudes:

How can I help? What did you need? Let’s make a date to get together. I can watch your kids on…. I’m going to call you next week,  send cards, etc,  anything and everything that involves self-care for healing for the person who is struggling with loss. Finally, just listening helps so much! You don’t have to have the perfect answer to the loss, just a willing ear to listen and a compassionate spirit to understand- but please, no pity!!

All of us will need support through losses in life,  regardless of who we are. Those of us with special children are more susceptible, but no one is immune from the grief that accompanies  losses. It is a question of when and how we respond to the grief that will determine how we effectively cope. Better sooner than later for sure! Self care will always be paramount for the long haul. When others support us in this quest, and visa versa, all of us are stronger and more able to weather the challenges that will be thrown our way. I know I can’t live my best life otherwise…

Thanks for reading, until we meet again…❤️😘😊